und chronisch Kranksein - ZHAW digitalcollection

Transcription

Bachelorarbeit
Das Erleben von Frauen im
Spannungsfeld von Mutter- und
chronisch Kranksein
Larissa Sauder S14655526
Departement:
Gesundheit
Institut:
Institut für Pflege
Studienjahr:
Dipl.PF 14
Eingereicht am:
15.04.2016
Betreuende Lehrperson:
Michelle Bruylands
Inhaltsverzeichnis
Abstract ............................................................................................................................ 1
1
1.1
1.2
Einleitung ............................................................................................................. 2
Zielsetzung und Fragestellung ............................................................................ 2
Thematische Eingrenzung ................................................................................... 3
2
2.1
Methodik .............................................................................................................. 4
Flowchart ............................................................................................................. 6
3
3.1
3.2
3.3
3.4
Theoretischer Hintergrund ................................................................................... 8
Mutter, Muttersein, Mutterschaft und Mütterlichkeit ............................................ 8
Chronisch krank .................................................................................................. 8
Familienzentrierte Pflege – Calgary Modell ......................................................... 9
Transition Theorie ............................................................................................. 11
4
4.1
4.2
4.3
4.4
4.5
4.6
4.7
4.8
4.9
4.10
Ergebnisse der Studien ..................................................................................... 14
Unterbruch im Muttersein .................................................................................. 16
Anpassung der Mutterrolle ................................................................................ 16
Beschützen der Kinder ...................................................................................... 17
Erleben von Schuld oder Scham ....................................................................... 18
Erfahrungen mit dem Gesundheitspersonal ...................................................... 19
Leben zum Muttersein - Muttersein zum Leben ................................................ 19
Soziale Unterstützung ....................................................................................... 20
Stigmatisierung .................................................................................................. 21
Verpassen ......................................................................................................... 22
Balance halten ................................................................................................... 22
5
5.1
5.2
5.3
5.4
Diskussion ......................................................................................................... 28
Qualität und Limitationen der Studien ............................................................... 28
Gemeinsamkeiten und Unterschiede der Studien ............................................. 29
Mutterschaft, Krankheit, Transition und Mutterbild ............................................ 29
Konsequenzen für die Praxis ............................................................................ 31
6
Schlussfolgerung ............................................................................................... 34
7
Limitationen der Bachelorarbeit ......................................................................... 34
Literaturverzeichnis ........................................................................................................ 36
Abbildungsverzeichnis ................................................................................................... 39
Tabellenverzeichnis ....................................................................................................... 39
Wortzahl ......................................................................................................................... 40
Danksagung ................................................................................................................... 40
Eigenständigkeitserklärung ............................................................................................ 40
Anhang ........................................................................................................................... 42
Larissa Sauder
Abstract
Hintergrund: In der Schweiz leben rund 3.4 Millionen Frauen. Ein Drittel gibt an, unter
einer chronischen Krankheit zu leiden. Für viele Frauen ist Mutter zu sein der zentrale
Lebensinhalt. Für chronisch kranke Mütter kann es schwierig sein, ihrer Mutterrolle
gerecht zu werden.
Ziel: Diese Arbeit hat das Ziel zu untersuchen, was die Literatur zu den spezifischen
Problemen von chronisch kranken Müttern von Kindern im Alter zwischen 0 bis 18
Jahren beschreibt.
Methode: Es wurde eine systematisierte Literaturrecherche in den Datenbanken
CINHAL, PsychInfo und Medline über den Zeitraum von September bis Dezember 2015
durchgeführt. Eingeschlossen wurde primär wissenschaftliche Literatur, welche sich mit
dem Erleben von chronisch kranken Müttern mit gesunden Kindern auseinandersetzt.
Ergebnisse: Acht qualitative Studien und eine Literaturreview wurden eingeschlossen
und folgende neun Kategorien gebildet: Unterbruch im Muttersein, Anpassung der
Mutterrolle, Beschützen der Kinder, Erleben von Schuld oder Scham, Erfahrungen mit
dem Gesundheitspersonal, Leben zum Muttersein - Muttersein zum Leben, Soziale
Unterstützung, Stigmatisierung, Verpassen und Balance halten.
Schlussfolgerung: Mütter durchleben aufgrund einer chronischen Erkrankung einen
Unterbruch der Kontinuität im Muttersein. Dies zwingt sie zu einer Anpassung ihrer
Mutterrolle. Sie selbst beschreiben sich primär als Mütter und erst dann als
Patientinnen.
Keywords. Mutter, Mutterschaft, Mutterrolle, chronische Krankheit, Erleben
Larissa Sauder
1
1
Einleitung
Der Anteil der Frauen in der Schweiz nahm von 2012 bis 2015 von 3.4 Millionen auf 4.1
Millionen zu (Bundesamt für Statistik, 2015). In der letzten Gesundheitsumfrage 2012
gaben ein Drittel der Frauen (33.8%) an, unter einem chronischen Gesundheitsproblem
zu leiden (Schweizerische Gesundheitsbefragung, 2012). Von diesen betroffenen
Frauen sind rund 1.5 Millionen im gebärfähigen Alter. Das schweizerische
Gesundheitsobservatorium (OBSAN) stellt in ihrem nationalen Gesundheitsbericht 2015
eine starke Zunahme der chronischen Erkrankung im mittleren Erwachsenenalter (24 64 Jahre) fest. Genaue Zahlen über chronisch kranke Frauen mit Kindern konnten nicht
ermittelt werden.
Von vielen Frauen wird das Muttersein als zentrale Rolle im Leben angesehen (FrancisConnolly, 2000). Wilson (2007) sagt, dass aufgrund einer Krankheit die Unfähigkeit,
sich um ihre Kinder kümmern zu können, die Identität der Mutter, moralisch und
existenziell, bedroht. Frauen mit einer chronischen Erkrankung beschreiben es als
schwierig, den Anforderungen der Krankheit und der Mutterschaft gerecht zu werden
(Backman, 2007). Diese Autorinnen halten fest, dass chronisch kranke Mütter in einem
anspruchsvollen Spannungsfeld zwischen Mutter- und chronisch Kranksein stehen.
In der Pflegepraxis zeigt sich, dass die naturgegebene Priorisierung des Kindeswohles
die Möglichkeit einer optimalen Therapie erschwert oder sogar unmöglich macht. Für
eine ganzheitliche Pflege von chronisch kranken Müttern ist es nötig, mehr über diese
spezifische Population zu erfahren. Durch eine systematische Auseinandersetzung in
der Forschung und Entwicklung kann das Erleben des beschriebenen Spannungsfeldes
erfasst werden und gegebenenfalls notwendige Anpassungen in den heutigen
Behandlungspfaden vollzogen werden. Es stellt sich aus pflegewissenschaftlicher Sicht
die Frage, wie die professionelle Pflege für chronisch kranke Mütter mit Kindern
gestaltet werden soll.
1.1
Zielsetzung und Fragestellung
Anhand dieser Bachelorarbeit sollen die Probleme von chronisch kranken Müttern von
Kindern im Alter zwischen 0 bis 18 Jahren beschrieben und mögliche Konsequenzen
für die Pflegepraxis aufgezeigt werden. Diese Konsequenzen sollen als Grundlage
Larissa Sauder
2
dienen, um den Umgang mit chronisch kranken Müttern im pflegerischen Setting zu
evaluieren. Für die Zielerreichung ergibt sich folgende zentrale Fragenstellung:
Was sagt die Literatur, zu den spezifischen Problemen von chronisch kranken Müttern
von Kindern im Alter zwischen 0 bis 18 Jahren für die Pflegepraxis?
1.2
Thematische Eingrenzung
Die Thematik chronisch kranker Mütter ist umfangreich. Im Fokus steht das Erleben der
chronischen kranken Mütter mit gesunden Kindern im Alltag zu beschreiben,
Schwierigkeiten und Probleme in ihrem Alltag zu eruieren, wie auch ihre Erwartungen
und Wünsche an das Gesundheitspersonal zu formulieren. Gewisse Teilbereiche
können in dieser Bachelorarbeit zu Gunsten der Aussagekraft der Ergebnisse auf die
spezifische Population nicht berücksichtigt werden. Folgende Teilbereiche werden nicht
berücksichtigt:
-
Art und Weise der chronischen Erkrankung:
Es wird nicht auf die Art der chronischen Krankheiten und deren spezifischen
Auswirkungen eingegangen, sondern übergreifend, gemäss unten beschriebener
Definition, alle Formen berücksichtigt.
-
Auswirkungen auf die Familie, wenn die Mutter chronisch krank ist:
Im Fokus der Arbeit stehen die Sichtweise und das Erleben der Mutter.
-
Adhärenz und chronische Krankheit:
In dieser Arbeit wird das Erleben der Thematik beleuchtet und nicht die
Auswirkungen auf die Therapie beschrieben
Larissa Sauder
3
2
Methodik
Die Fragstellung wurde anhand einer systematisierten Literaturrecherche vom
September 2015 bis Dezember 2015 bearbeitet. Es wurde in den Datenbanken
CINAHL, PsychInfo und Pubmed nach relevanten Studien recherchiert. Folgende
Keywords wurden mit dem Booleschen Operator «AND» kombiniert benutzt:
Tabelle 1
Keywords
Deutsch
Mutter
Mütter
Elternschaft
Englisch
Mother
Mothers
Parenting
Mutterschaft
Mutterrolle
Motherhood
Maternal role
Chronische
Krankheit
Chronic disease
Chronic illness
Chronic condition
CINHAL Headings
(MH"Single parent")
Map Terms
("mothers"[Mesh])
(MH"Parenting")
(MH"Parents, Disable")
(MH"Motherhood")
(MH"Maternal role")
(MH"Mother-Child
Relation")
("Chronic Disease")
("Chronic Ilness")
(“Parental role”[Mesh])
("Mother-Child
Relation"[Mesh]
("Chronic Disease"[Mesh])
("Chronic Illness"[Mesh])
Disrupted
mothering
Es wurde nur das Limit „englische oder deutsche Sprache“ verwendet, um
Primärliteratur zu finden, welche verständlich ist.
Die gefundenen Treffer wurden anhand der Titel nach ihrer Relevanz beurteilt. Bei den
relevanten Titeln wurden die Abstracts gelesen und die Studien anhand folgenden
Kriterien ein- oder ausgeschlossen:
Tabelle 2
Ein- und Ausschlusskriterien
Studien Design
Population
Exposition
Einschlusskriterien
Qualitative Studien
Quantitative Studien
Mütter mit gesunden Kindern im Alter von 0
bis 18 Jahre
Chronisch Krankheit
Outcome
Erleben von chronischer Krankheit und
Mutterschaft
Zeitliche Publikation
uneingeschränkt
Ausschlusskriterien
Sekundär und Graue
Literatur
Mütter mit kranken Kindern
Aufgrund des definierten Umfangs konnten maximal zehn Studien eingeschlossen
werden. Um dies zu erreichen wurden in einem weiteren Auswahlverfahren alle
Larissa Sauder
4
quantitativen Studien ausgeschlossen. Bei den übrigen eingeschlossenen Abstracts
wurde anschliessend der Volltext gelesen und aus den Literaturverzeichnissen
unsystematisch nach weiterführender Literatur gesucht. Im Unterkapitel 2.1 ist der
Prozess anhand eines Flowchart skizziert. Eine umfassende Dokumentation zur
Literaturrecherche befindet sich im Anhang.
Anschliessend wurden die eingeschlossenen Studien mit einer selbsterstellten Vorlage
anlehnend an das EMED-Format (Einleitung – Methoden – Ergebnisse – Diskussion)
nach LoBiondo-Wood und Haber (2005) und Burns und Grove (2005)
zusammengefasst, mittels der Beurteilungskriterien nach Lincoln und Guba (1985)
systematisch gewürdigt und anhand der Evidenzpyramide nach DiCenso, Bayley und
Haynes (2009) eingeschätzt. Die Literaturreview wurde nach Behrens und Langer
(2010) eingeschätzt. Die Zusammenfassungen inklusive Würdigungen befinden sich im
Anhang.
Larissa Sauder
5
2.1
Flowchart Limits: englische oder deutsche Sprache
Pubmed
n=349
("Mother-Child
Relation"[Mesh]), ("Chronic
Disease"[Mesh]), ("MotherChild Relations"[Mesh]) AND
"Chronic Disease"[Mesh],
AND "disrupted mothering",
("Chronic Disease") AND
("motherhood")
Freesearch in
Literaturverzeichnissen
n=6
PsychInfo
n=190
("mothers"[Mesh]), ("Chronic
Illness"[Mesh]), ("Parental
role"[Mesh]), ("mothers"[Mesh])
AND ("Chronic Illness"[Mesh],
("mothers"[Mesh]) AND ("Chronic
role"[Mesh]) AND ("Chronic
role"[Mesh]) AND ("Chronic
Illness"[Mesh]), ("Chronic
Illness"[Mesh]) AND "disrupted
mothering", ("Chronic
Illness"[Mesh]) AND
"motherhood"
CINAHL
n=164
(MH "Parents, Disabled"), (MH
"Chronic Disease"), (MH "Parents,
Disabled") AND (MH "Chronic
Disease"), (MH "Motherhood"), (MH
"Chronic Disease") AND (MH
"Motherhood"), (MH "Single
parent"), (MH "Chronic Disease")
AND (MH "Single parent"),
(MH"maternal role"), (MH"maternal
role") AND (MH "Chronic
Disease"),(MH"Parenting"),
(MH"Parenting") AND (MH "Chronic
Disease"), (MH"Mother-Child
Relation"), (MH"Mother-Child
Relation") AND (MH "Chronic
Disease"), (MH"Mother-Child
Relation") AND (MH "Parents,
Disabled"), (MH "Chronic Disease")
AND "disrupted mothering"
Titel
n=709
Abstracts
n=104
Volltext
n=58
Eingeschlossene
Studien
n=9
Ausgeschlossene Studien
n=605
kranke Kinder =311
Wochenbett =17
Nicht erleben = 79
Keine Mütter = 122
Nicht chronisch krank= 64
Graue Literatur =12
n=46
Kranke Kinder = 2
Nicht erleben = 19
Keine Mütter = 5
Nicht chronisch krank = 2
Graue Literatur = 17
Nicht englisch/deutsch = 1
n=41
Nicht erleben = 6
Graue Literatur = 8
In Literaturreview = 12
Quantitative Studien = 15
Doppelte = 8
Abbildung 1. Flowchart
Larissa Sauder
6
3
Theoretischer Hintergrund
In den folgenden Kapiteln werden die zentralen Begriffe definiert und die theoretischen
Hintergründe des Calgary Modell und der Transition Theorie beschrieben.
3.1
Mutter, Muttersein, Mutterschaft und Mütterlichkeit
Aus biologischer Sicht ist eine Mutter eine Frau, welche ein oder mehrere Kinder
geboren hat und / oder in der Rolle als Mutter ein oder mehrere Kinder erzieht und
versorgt (Duden, 2014). Diese Definition bezieht sich lediglich auf die funktionelle
Erlangung des Titels „Mutter“. In der Auseinandersetzung mit der Thematik zeigt sich,
dass Muttersein ein viel diffuserer und emotional stark beladener Begriff ist. Um den
Begriff Mutter umfassender definieren zu können, wird dieser im folgenden nach drei
Aspekten differenziert: Mutterschaft, Muttersein und Mütterlichkeit (Heidinger, 2010).
Unter Mutterschaft wird der biologische Vorgang der Empfängnis, Schwangerschaft und
Geburt zusammengefasst werden. Muttersein ist ein soziales Konstrukt und geprägt
von historischen, kulturellen und sozialen Aspekten. Mütterlichkeit beschreibt eine
menschliche Haltung und ist wesentlich für die Erziehung von Kindern. Sie kann sich
ebenfalls gegenüber anderen Menschen, unabhängig von Alter oder Beziehung, als
eine Art von Zuwendung zeigen (Heidinger, 2010).
Was das Thema Muttersein diffus macht, ist die historische Dimension, welche diesen
Begriff prägt. Muttersein ist an „Frau sein“ gekoppelt und so an die geschichtliche
Entwicklung der Frau (Heidinger, 2010). Durch die Geschichte wurde ebenfalls der
Begriff des Mutterbildes, was also gesellschaftlich unter einer „guten“ oder „schlechten“
Mutter verstanden wird, geprägt. Das heutige gesellschaftliche Mutterbild ist eher
negativ besetzt und wird mit den Begriffen „unmodern, unattraktiv, unselbständig“
assoziiert. Ebenfalls geniesst das Mutterbild wenig Ansehen und gesellschaftliche
Wertschätzung (Heidinger, 2010). Dies zeigt sich auch darin, dass Berufe, welchen eine
Art Mütterlichkeit immanent ist, wie zum Beispiel bei Pflegeberufen, wenig
Wertschätzung geniessen und geringer entlöhnt werden (Heidinger, 2010).
3.2
Chronisch krank
Der Begriff «chronische Krankheit» umfasst eine grosse Spannweite von Erkrankungen
und Krankheitsverläufen. Der Begriff erweist sich als sehr komplex, sodass es keine
einheitliche Definition gibt. Haslbeck, Klein, Bischofberger und Sottas (2015) fassen die
Larissa Sauder
8
gängigsten Definitionen von «chronischer Krankheit» als Gesundheitszustände, welche
längere Zeit oder gar lebenslang bestehen und weder spontan heilen noch kurativ
behandelt werden können, zusammen. Eine weitere Art der Unterscheidung ist, sie in
übertragbare und nicht-übertragbare Erkrankungen zu unterteilen (World Health
Organisation, 2011). Liegt eine chronische Erkrankung vor, wirkt sich diese immer
wieder auf soziale, psychische, physische und ökonomische Aspekte des Lebens der
Betroffenen aus. Chronische Krankheit hat nicht nur für die Betroffenen, sondern auch
für das Umfeld sowie die Gesellschaft Folgen (Morof Lubkin & Larsen, 2002).
3.3
Familienzentrierte Pflege – Calgary Modell
Das Calgary Modell ist eine direkte Weiterentwicklung des ursprünglichen FamilienAssessment-Modelles von Tomm und Sanders (1983) durch Wright und Leahey (2014).
Die theoretischen Grundlagen bilden die Systemtheorie, Kybernetik, Kommunikationswissenschaft und die Veränderungstheorie. Das Modell ist ein multidimensionales
Konzept und besteht aus zwei Anteilen: 1.) das Calgary Familien-Assessment-Modell
(CFAM) mit den zentralen Kategorien Struktur, Entwicklung und Funktion und 2.) dem
Calgary Familien-Interventions-Modell (CFIM). Das CFAM mit dem Instrument „Geno-,
Öko- und Beziehungsdiagramm“ dient zur Erfassung der Familienmitglieder, der soziokulturellen Hintergründe sowie der Beziehungen des sozialen Netzwerkes. Beispiele für
ein Geno-, Öko- und Beziehungsdiagram sowie dem Modell mit den zentralen
Kategorien sind unten abgebildet.
Abbildung 2. Beispiel eines Geno-, Öko- und Beziehungsdiagramm
Larissa Sauder
9
Das CFIM ist ein strukturgebendes Interventionskonzept, welches der Pflege hilft, die
Familienfunktion in den Bereichen Kognition, Affektion und Verhalten zu stärken und zu
verbessern (Wright & Leahey, 2014).
Wright und Leahey (2014) formulieren, dass die Pflege den Auftrag, sowie die ethische
und moralische Verpflichtung hat, die Familie der Patientin oder des Patienten in ihre
Gesundheitsversorgung miteinzubeziehen. Sie verstehen Krankheit stets als eine
Familienangelegenheit, was sich mit der Erkenntnis von Morof Lubkin und Larsen
(2002) wie oben beschrieben deckt. Familie bedeutet für Wright und Leahey (2014) ein
System oder eine Einheit, in welchem die Mitglieder verwandt sind oder auch nicht. Zu
diesem System können Kinder gehören, müssen aber nicht. Diese Einheit zeichnet sich
durch eine grosse Bindung, dem Zugehörigkeitsgefühl und dem Wunsch nach einer
gemeinsamen Zukunft aus. Weiter übernehmen die Mitglieder Fürsorgefunktionen wie
Schutz, Ernährung und Sozialisation. Wright und Leahey (2014) erweitern das
klassische Familienbild, um zwei externe Subkategorien: die erweiterte Familie und
grössere Systeme. Zur erweiterten Familie gehört die Herkunftsfamilie der Mitglieder.
Sie ist eine oft unsichtbare und sehr starke Ressource. Unter grössere Systeme
verstehen Wright und Leahey (2014) soziale Einrichtungen und deren Mitarbeiter,
welche einen engen Kontakt zur Familie pflegen.
Strukturell
Innhalb der Familie
Zusammensetzung der Familie
Gender und Sexuelle Orientierung
Rangordnung
Subsysteme Grenzen
Ausserhalb der Familie
Verwandtschaft und Nachbarschaft
Grössere Systeme
Informelle Unterstützungsnetze
Kultur
Ethnie
Soziale Klasse (Lebensstil, Finanzen)
Religion und Spiritualität
Umgebung
gegenwärtiger Stand
Lebenszyklus
Vorgeschichte Kernfamilie
bedeutende Lebensereignisse
Entwicklungsziele
Aktivitäten des alltäglichen Lebens
Emotionale Kommunikation
Verbale/Nonverbale Kommunikation
Zirkuläre Kommunikation
Problemlösung/Bewältigungsstrategien
Rollen
Einfluss und Macht
Vorstellungen/Überzeugungen/Werte
Gesundheitsbewusstsein
Allianzen und Koalitionen
Gesellschaftlicher Kontext
Entwicklung
Familien
Assessment
Stadien
Aufgaben
Emotionale Bindungen
Funktion
Instrumentell
Expressiv
Abbildung 3. Calgary Familien Assessment Modell (CFAM)
Larissa Sauder
10
3.4
Transition Theorie
Die Transition Theorie ist eine pflegewissenschaftliche Theorie mittlerer Reichweite von
Meleis, Sawyer, Im, Messias und Schumacher aus dem Jahr 2000. Unter Transition
wird das Phänomen der Veränderung respektive des Überganges von einem in einen
anderen Zustand verstanden. Die Transition Theorie besteht aus den vier sich
gegenseitig beeinflussenden Anteilen: Art der Transition, Transition Bedingungen,
Reaktionsmuster und pflegetherapeutische Intervention und ist unten abgebildet (Meleis
et al., 2000).
Natur der Transition
Arten
Entwicklung
Situation
Gesundheit/Krankheit
Organisation
Muster
single
multipel
sequenziell
simultan
verbunden
nicht-verbunden
Eigenschaften
Bewusstsein
Engagement
Wechsel/Veränderung
Zeitspanne
Kritische Ereignisse
Beinflussende Faktoren:
stärkend und störend
Reaktionsmuster
Person
Charakter
Glauben
Kutur
Sozioökonomischer Status
Vorbereitung und Wissen
Prozess
Gefühl der Verbundenheit
Interaktion
Lokalisiert & situiert
Entwicklung von
Wohlbefinden und
Bewältigungsstrategie
Soziale
Ressourcen
Ergebnis
Bewältigung
Entwicklung
Integration
Gesellschaft
Pflegetherapeutische Beziehung
Abbildung 4. The Midrange Transition Theory from Meleis et al. (2000).
Meleis et al. (2000) beschreiben, dass eine Veränderung in der Gesundheit und
Krankheit einen individuellen Prozess der Transition verursacht und dieser Prozess die
Betroffenen in eine Situation bringt, in welcher sie sehr vulnerable sind. Diese
Vulnerabilität ist dem Transitionsprozess immanent und birgt das Risiko einer
problematischen oder verlängerten Genesung sowie einer verzögerten oder
gesundheitsschädigenden Bewältigung. Transition resultiert aus und in Veränderung
von Leben, Gesundheit, Beziehungen und Umgebungen. Weiter beschreiben Meleis et
al. (2000), wie Pflegende in ihrer Praxis täglich mit Menschen und deren Familien,
welche sich in einem Transitionsprozess befinden, konfrontiert sind. Meleis et al. (2000)
Larissa Sauder
11
sehen die Familie, wie Wright und Leahey (2014), als integraler Bestandteil der
Pflegepraxis.
Chronisch kranke Mütter sind, aufgrund ihrer chronischen Erkrankung und der
Mutterschaft, in einer multiplen und simultan verbundenen Transition. Die infolgedessen
anhaltende Transition bedeutet eine fortlaufende Vulnerabilität der betroffenen Frau,
ihrer Familie und ihrem Umfeld.
Larissa Sauder
12
4
Ergebnisse der Studien
Im folgenden Kapitel werden die Ergebnisse der eingeschlossenen Studien vorgestellt.
Zuerst werden die Ergebnisse der einzelnen Studien anhand der Kategorien aus der
Literaturreview von Vallido, Wilkes, Carter und Jackson (2010) vorgestellt. Danach
folgen diejenigen Ergebnisse, welche diesen Kategorien nicht zugeordnet werden
konnten, aber in mehreren Studien präsentiert wurden. In den Kategorien findet sich
jeweils zuerst eine Definition und anschliessend werden die Ergebnisse vorgestellt. In
der Tabelle 3 sind die Kategorien mit den dazugehörigen Studien aufgelistet. Diese
Kapitel schliesst mit einer Übersicht der eingeschlossenen Studien ab, siehe Tabelle 4.
Larissa Sauder
14
Larissa Sauder
X
X
X
Erfahrungen mit
dem
Gesundheitspersonal
Leben zum
Muttersein Muttersein zum
Leben
Soziale
Unterstützung
15
Balance halten
Verpassen
X
X
X
Erleben von
Schuld oder
Scham
Stigmatisierung
X
X
Beschützen der
Kinder
X
X
X
X
X
X
Anpassung der
Mutterrolle
X
X
Unterbruch im
Muttersein
Kategorien
MS
AS
RA
RA
Darmerkrankungen
Sklerodermie
Erkrankungen
der Population
Barlow
et al.
(1999)
Throne
(1990)
Studien
X
X
X
X
X
Zerebrale
Lähmung
Skoliose
NI
M.Parkinson
MS
DM
Fibromyalgie
Retinitis
pigmentosa
Farber
(2000)
X
X
X
X
RA
Ueno&
Kamibeppu
(2008)
Vallido
et al.
(2010)
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
X
Chronische Schizophrenie HIV/AIDS
Schmerzen Affektive
Krebs
Störungen
Psychische
Erkrankungen
RA
Mitton Evans&
et al.
de Souza
(2007) (2008)
X
X
X
M.Crohn
Krebs
Kardiomyopathie
Lungenfibrose
Bipolare Störung
Depression
Schizophrenie
Epilepsie
Power
et al.
(2011)
X
X
Terminale
NI
Wadd
et al.
(2014)
Tabelle 3
Übersicht der Kategorien
4.1
Unterbruch im Muttersein
Vallido et al. (2010) verstehen unter „Unterbruch im Muttersein“ die Situation, in welcher
eine Frau wahrnimmt, dass das Ausleben ihrer gewohnten Mutterrolle gestört ist.
Mitton, Treharne, Hale, Williams und Kitas (2007) beschreiben den Unterbruch im
Muttersein als Verlust des alten Lebens, was mit den Gefühlen von Frustration, Angst
vor der Zukunft, Angst vor erneuter Schwangerschaft, tiefem Selbstwertgefühl und
Selbstvertrauen einhergeht. Für die Mütter ist es von grosser Bedeutung und eine
Quelle der Stärke ihre Unabhängigkeit und ihre Identität erhalten zu können. Eine
chronische Krankheit führt zu einem Unterbruch in der Kontinuität des Mutterseins. Vor
allem beim Auftreten einer akuten Verschlechterung führt dies zu zusätzlichem Stress
bei den Müttern. Auch die Auswirkungen, wie vermehrte Müdigkeit oder
Nebenwirkungen von Medikamenten, hindern die Frauen in der Möglichkeit ihr
Muttersein zu leben (Barlow, Cullen, Foster, Harrison & Wade, 1999; Throne, 1990,
Vallido et al., 2010). Die Unterbrechung im Muttersein macht es für die betroffenen
Frauen schwierig, ihre Kinder gemäss ihren Vorstellungen zu erziehen (Power,
Jackson, Weaver & Carter, 2011). Bezeichnenderweise glauben auch viele Mütter,
dass sich die zeitweise mangelnde Verfügbarkeit aufgrund der Krankheit nachteilig auf
ihre Kinder und ihre Reputation auswirkt (Throne, 1990).
Den Frauen ermöglicht die Rolle als Mutter eine bedeutungsvolle Identität und geht mit
dem Gefühl von Sicherheit und gebraucht zu werden einher. Sie empfinden aber auch,
dass niemand „gut genug“ sei, um ihre Rolle zu übernehmen (Vallido et al., 2010).
Gewisse Aufgaben können nicht delegiert werden, sondern nur durch die Mutter erfüllt
werden (Throne, 1990).
4.2
Anpassung der Mutterrolle
Vallido et al. (2010) verstehen unter der Anpassung der Mutterrolle die Fähigkeit ,die
Mutterrolle in einem Kontinuum zwischen „manchmal kann ich und manchmal kann ich
nicht“ wahrzunehmen. Diese Anpassung beschreiben die Mütter von traurig, dass sie
nicht das für ihre Kinder tun können, was sie möchten, bis hin zu einer pragmatischen
Akzeptanz ihrer Einschränkungen. Die chronische Erkrankung und die damit
verbundenen Einschränkungen führen dazu, dass sich die Frauen damit
auseinandersetzten, was für sie eine „gute“ Mutter ausmacht. Für viele Frauen ist
Muttersein ihre zentrale Identität, welche durch eine chronische Krankheit mit einem
Larissa Sauder
16
möglichen tödlichen Verlauf existentiell bedroht ist und die Frauen in der Erfüllung ihrer
Aufgabe als Mütter hindert.
Die Aufgaben des Mutterseins werden nicht nur durch die Therapien oder die
Kankheitsphasen, sondern auch durch das mögliche Ende der Mutterschaft durch den
Tod beeinträchtigt. Viele Mütter fühlen sich als Versagerinnen, da sie nicht genug lange
leben, um ihre Kinder und Grosskinder aufwachsen zu sehen (Vallido et al., 2010). Die
betroffenen Mütter sind sich im klaren darüber, dass sie für ihre Kinder nicht das tun
können, was sie eigentlich möchten (Ueno & Kamibeppu, 2008). Dies hinterlässt das
Gefühl der Hilflosigkeit und Frustration in Bezug auf die Erfüllung der Mutterrolle. Power
et al. (2011) zeigen ebenfalls auf, wie die Mütter unter Gefühlen von Frustration und
Entkräftung leiden, da sie ihre Rolle nicht gemäss ihren Erwartungen erfüllen können.
Für die meisten betroffenen Mütter resultiert aus der chronischen Krankheit eine
Einschränkung in der Interaktion mit ihren Kindern. Dies zeigt sich vor allem durch die
physischen Limitierungen, wie beim Hochheben, Spielen oder beim Ausflüge
unternehmen (Barlow et al., 1999). Die ständig mangelnde Energie hindert die Mütter
daran ihre Kinder zu kontrollieren oder auch masszuregeln (Evans & de Souza, 2008).
Auch die täglichen haushälterischen Aufgaben, wie Staubsaugen, Wischen oder das
Zubereiten der Mahlzeiten werden für die betroffenen Frauen zu einer Herausforderung
(Wadd, Bennett & Grant, 2014).
Das Verständnis der Mutterrolle wird durch die momentanen und wiederkehrenden
Erlebnisse beeinflusst (Farber, 2000). Barlow et al. (1999) beschreiben beispielsweise,
wie Mütter, welche mit ihrer Krankheit hadern, es ebenfalls als schwierig erachten,
Erfüllung in der Elternrolle zu finden. Faber (2000) geht davon, dass das Verständnis
der Mutterrolle mit dem Grad der Selbstannahme der Beeinträchtigung infolge der
Krankheit korreliert.
4.3
Beschützen der Kinder
Ihre Kinder vor Leid und einer anormalen Kindheit zu beschützen ist ein Wunsch und
bis zu einem gewissen Grad die Aufgabe einer Mutter.
Mütter mit einer chronischen Krankheit möchten ihre Kinder auch vor einer möglichen
Stigmatisierung und zukünftigen Ereignissen, wie der Verlust von ihnen, beschützen.
Die Kinder sollen keine Angst haben ihre Mutter zu verlieren oder sich Sorgen um ihre
Larissa Sauder
17
Mutter machen müssen (Vallido et al., 2010). Der mögliche Tod und das damit
verbundene Verwaisen belasten die Mütter sehr (Throne ,1990).
Um ihre Kinder zu schützen verschleiern viele Mütter die tatsächlichen Auswirkungen
ihrer Krankheit. Viele organisieren ihre Therapie an Randzeiten oder in der Nacht,
sodass sie tagsüber ihre Kinder betreuen können (Vallido et al., 2010). Barlow et al.
(1999) und Mitton et al. (2007) legen dar, dass Sicherheitsaspekte im Zusammenhang
mit physischen Einschränkungen im Rahmen einer chronischen Erkrankung ein
grosses Thema ist. Mütter äussern Ängste, ihre Kleinkinder nicht richtig halten zu
können, fallen zu lassen oder dass sie ihre Kinder nicht vor Unfällen beim herumklettern
oder herumtollen schützen können. Farber (2000) beschreibt weiter, wie sich die Mütter
aufgrund dieser Umstände als „anders“ als „gesunde“ Mütter wahrnehmen.
Mütter beschreiben sich selbst als unersetzbar (Power et al., 2011) und möchten ihre
Kinder vor dem Verlust ihrer selbst beschützen. Throne (1990) thematisiert neben dem
Verlust durch den Tod auch den Verlust durch den Entzug des Sorgerechtes und die
Fremdplatzierung der Kinder. Sie beschreibt, wie Mütter sich vor einem möglichen
Entzug des Sorgerechtes fürchten. Sie fürchten sich davor, dass ihnen die Kinder
weggenommen würden, wenn sie nicht genug Stärke zeigen und ihren Alltag mit Kinder
und Krankheit bewältigen können.
4.4
Erleben von Schuld oder Scham
Mütter, welche aufgrund ihrer Krankheit nicht wie gewünscht für ihre Kinder sorgen
können, fühlen sich oft schuldig.
In den Studien werden zwei Ursachen von Schuldgefühlen beschrieben: 1) aufgrund
der Krankheit nicht wie erwartet ihre Aufgaben erfüllen zu können und 2) aufgrund der
Möglichkeit die Krankheit zu vererben oder übertragen zu haben, speziell im Bereich
von infektiösen Krankheiten wie zum Beispiel HIV. Die Bürde der Schuldgefühle kommt
zur Belastung durch die Krankheit hinzu. Manche Frauen äusserten, dass
Schuldgefühlen generell zum Mutter sein dazugehören (Vallido et al., 2010). Barlow et
al. (1999) zeigen auf, dass Mütter weniger die physischen Einschränkungen, als die
psychischen Auswirkungen ihrer Erkrankung beschäftigt, wie zum Beispiel das Gefühl
ihre Funktion in der Mutterrolle nicht zu erfüllen. Weiter beschreiben sie, wie sich die
Mütter schuldig fühlen, wenn andere, speziell die älteren Kinder, ihnen helfen müssen.
Auch Evans und de Souza (2008) beschreiben, dass die Mütter aufgrund der
Larissa Sauder
18
Kraftlosigkeit oder Müdigkeit nicht den Bedürfnissen ihrer Kinder gerecht werden
können und dies einher geht mit dem Empfinden von Schuld.
Mütter mit einer chronischen psychischen Erkrankung bedauern, dass diese ihre Kinder
traurig oder nervös macht (Ueno & Kamibeppu, 2008).
Das englische Wort „shame“ kann wortwörtlich ins Deutsche als Scham übersetzt
werden. Jedoch zeigte sich in der thematischen Auseinandersetzung, das Vallido et al.
(2010) unter „shame“ wohl eher das Gefühl von „nicht genügen“ als das Gefühl der
Verlegenheit meinen. In der Literaturreview gibt es trotz Kategorienname keine
Erwähnung von „shame“ im Text.
4.5
Erfahrungen mit dem Gesundheitspersonal
In den Studien werden grosse Probleme mit dem Gesundheitspersonal beanstandet.
Die häufigsten Probleme sind: nicht als Mutter wahrgenommen zu werden sowie bei
einem Kinderwunsch bei chronischer Erkrankung nicht verstanden und nicht ernst
genommen zu werden. Weil das Gesundheitspersonal die chronisch kranken Frauen
mehr als Patientinnen, denn als Mütter wahrnehmen, sprechen die Betroffenen nicht
über persönliche Probleme bei der Erfüllung (Vallido et al., 2010; Mitton et al., 2007).
Bereits Throne zeigte diese Problematik 1990 auf. Die Krisen der Mütter werden nicht
als solche anerkannt und Unterstützung nur bei offensichtlichen Einschränkungen
gewährt. Zeigten sich die Mütter als mobil und stark, wurde ihnen der Bedarf
notweniger Unterstützung nicht anerkannt (Throne, 1990)
Ein weiteres Problemfeld sind Information und Beratung zum Thema Sexualität und
Krankheit. Die Frauen äusserten, zu wenig über die Risiken und mögliche Probleme
bezüglich Schwangerschaft und ihrer Krankheit aufgeklärt worden zu sein oder ihre
Krankheit und deren Auswirkungen wurden im Rahmen der Schwangerschaft und
Geburt ausgeblendet (Mitton et al., 2007).
Positive Erfahrungen entstanden, wenn das Gesundheitspersonal für die Mütter zu
einer erweiternden Familie wurde, deren Unterstützung sie schätzten (Farber, 2000).
4.6
Leben zum Muttersein - Muttersein zum Leben
Für viele Frauen ist das Muttersein ein zentraler Lebensinhalt, der nicht nur sinnstiften
wirkt, sondern auch den Lebenswillen stärkt.
Larissa Sauder
19
Mütter fühlen sich verpflichtet, am Leben zu bleiben um für ihre Kinder Sorge tragenzu
können. Sie haben das Ziel gewisse Ereignisse im Leben ihrer Kinder erleben zu
wollen. So wird das Muttersein zu einer Ressource für die Bewältigung des Alltages als
Mutter und chronisch Kranke (Vallido et al., 2010). Die Anwesenheit der Kinder
unterstützt ihre Mütter im Kampf mit der chronischen Erkrankung und fordern von ihnen
die Reflexion der Bewältigungsstrategien (Throne,1990; Barlow et al., 1999). Kinder
halfen den Müttern ihr Selbstvertrauen und ihre Zuversicht, welche durch die Krankheit
beschädigt wurde, wieder zu erlangen (Mitton et al., 2007).
Die Bewältigung der Mutterrolle und der Krankheit erfüllt die Mütter mit Stolz erfüllt. Die
Familie, das Muttersein und andere Lebensziele halfen den Frauen dabei, Phasen von
Depression und negativen Gedanken zu überwinden (Evans & de Souza, 2008).
4.7
Soziale Unterstützung
Soziale Unterstützung bezieht sich hier auf jegliche Art und Weise von
zwischenmenschlicher Unterstützung, welche chronisch kranke Mütter erhalten und
erleben oder nicht.
Eine chronische Erkrankung während der Mutterschaft zwingt die Frauen in eine
Situation, in welcher sie soziale Unterstützung benötigen. Es besteht jedoch eine
Diskrepranz zwischen der verfügbaren und der nötigen Unterstützung. Daraus entsteht
ein Spannungsfeld zwischen Konflikten, Frustration, dem Gefühl der Verlassenheit,
Sorge und der limitierten oder unzufrieden stellenden Auswahl von sozialer
Unterstützung (Power et al., 2011). Mütter zwar anerkennen zwar, dass sie Hilfe
benötigen und diese essentiell ist. Es fällt ihnen aber schwer, diese für sich zu erbitten
(Barlow et al., 1999). Die Mütter sind damit konfrontiert unterscheiden zu müssen,
welche Aufgaben delegiert werden können und welche ihrer Rolle zugehörig sind
(Throne, 1990). Hinzu kommt, dass sich die Mütter durch die Unterstützung im Bereich
der Kinderbetreuung in ihrer mütterliche Verbundenheit zu den Kindern bedroht fühlen.
Durch die Übernahme der mütterlichen Aufgaben werden diese Personen zu
Bezugspersonen der Kinder (Power et al., 2011). Die benötigte Unterstützung wird vor
allem dann als ambivalent emofunden, wenn dich die Mütter dadurch als unfähig oder
unzulänglich und ausgeschlossen erleben (Farber, 2000).
Die Organisation von Unterstützung gehört zu einer Bewältigungsstrategie, um die
Einschränkungen einer Krankheit zu überwinden (Evans & de Souza, 2008). Dabei
Larissa Sauder
20
wirkt sich die Art der Beziehung, durch welche die soziale Unterstützung zusande
kommt, unterschiedlich aud das Wohlbefinden der Mutter aus. Unterstützung, welche
aus Freundschaft geleistet wurde zeigt ein höheres Mass an Stärkung und positiven
Auswirkungen auf die Mutter, als jene, welche aus dem Gefühl der Verpflichtung
gegenüber der Familie geleistet wurde (Power et al., 2011). Farber (2000) ergänzt,
dass ungebete Hilfe sowie übertriebene Unterstützung als Grenzüberschreitung erlebt
wird.
Eine andere soziale Ressource sind oftmals die Kinder. Sie sind nicht nur eine
physische Hilfe, sondern sehr oft eine moralische Unterstützung für die Mütter. Die
Kinder werden dadurch sehr früh in ihren sozialen Fähigkeiten gefördert (Throne,
1990). Viele Mütter beschreiben, wie ihre Kinder ein höheres Mass an Empathie zeigen.
Auch Barlow et al. (1999) konnten diese Entwicklung der Kindern aufzeigen. Diese
helfen ihren Müttern im Haushalt, trösten sie in schwierigen Situationen durch eine
Umarmung oder können sie sogar aufmuntern (Evans und de Souza, 2008; Ueno &
Kamibeppu, 2008). Dadurch, dass die Kinder mit der chronischen Krankheit der Mutter
aufwachsen, lernen sie beispielsweise den Zustand der Mutter adäquat einzuschätzen
und ihr Verhalten der Verfassung der Mutter anzupassen (Ueno & Kamibeppu, 2008).
Grundsätzlich werden die Kinder als sehr hilfsbereit beschrieben. Einige Mütter äussern
aber die Sorge, zu sehr von ihren Kindern abhängig zu sein. Weiter haben die Mütter
Angst davor, dass ihre Kinder durch die benötigte und geleistete Unterstützung zu
schnell erwachsen werden müssen (Throne, 1990).
4.8
Stigmatisierung
Stigmatisierung wird als Diskreditierung von Personen aufgrund einer Art von
Andersartigkeit verstanden.
Die Stigmatisierung wird als Problem der Mutter wie auch der Kinder thematisiert. Die
Kinder sind durch ihre chronisch kranken Mütter und deren Einschränkungen ein
häufiges Opfer von verbalen Attacken von älteren Kindern (Farber, 2000). Mütter mit
einer chronischen psychischen Erkrankung leiden zusätzlich darunter, dass ihre Kinder
stigmatisiert werden. Auch ist es für die Mütter sehr unangenehm, in der Öffentlichkeit
über ihre Erkrankung zu sprechen (Ueno & Kamibeppu, 2008). Mitton et al. (2007)
legen ebenfalls dar, wie wichtig es für Mütter ist ihre Krankheit vor anderen zu
verbergen, um als „normal“ zu gelten. Obwohl Vallido et al. dafür keine Kategorie
Larissa Sauder
21
schufen, erwähnen sie, dass die Mütter von ihrem Umfeld diskreditiert und als
„schlechte“ Mütter beurteilt werden (Vallido et al., 2010). Dies geht so weit, dass sie ihre
Krankheit bei der Arbeitsstelle verheimlichen. Dies aus der Angst, ihre Mitarbeiter
könnten denken, dass sie ihre Aufgabe nicht richtig erfüllen können (Mitton et al., 2007).
4.9
Verpassen
Verpassen bezieht sich hier darauf, dass etwas nicht geteilt, durchgeführt oder an
etwas nicht teilgenommen werden kann.
Mütter mit einer chronischen Erkrankung sind stets damit konfrontiert, auf etwas
verzichten zu müssen oder zu verpassen, speziell wenn es ihre Kinder betrifft. Den
Müttern ist es ein grosses Anliegen an speziellen Gegebenheiten wie Geburtstagen
oder dem Urlaub teilhaben zu können. Oft ist dies aber nicht möglich oder bedeutet
eine grosse Hürde aufgrund von physischen Einschränkungen, Schmerzen oder
Therapien (Throne, 1990; Wadd et al., 2014).
Die Mütter haben das Gefühl, ein Teil der Kindheit ihrer Kinder zu verpassen, da sie
gewisse Tätigkeiten oder Spiele nicht mitmachen können (Barlow et al., 1999; Evans &
de Souza, 2008). Auch wird es von den betroffenen Müttern es als unfair erlebt, dass
ihre Kinder aufgrund der Einschränkungen auf gewisse Dinge verzichten müssen
(Evans & de Souza, 2008).
Aufgrund der zeitintensiven Therapie verlieren die Mütter den Anschluss zu ihren
Freunden verlieren und fühlen sich von der Familie abgeschnitten. Zudem ist es kaum
möglich kurzfristigeTermine wahrzunehmen (Wadd et al., 2014).
4.10 Balance halten
„Balance halten“ meint hier, zwei oder mehrere Faktoren gleichzeitig gegeneinander
abzuwägen und deren Auswirkungen in einem Gleichgewicht zu halten. Im Leben von
Müttern mit einer chronischen Erkrankung ist das Thema der Balance ein zentraler
Aspekt.
Die Balance zwischen Selbst- und Kinderpflege ist ein wichtiges Element im
erfolgreichen Muttersein. Selbstpflege darf nicht egoistisch gewertet werden, sondern
ist eine Voraussetzung, um für die Kinder sorgen zu können. Die Selbstpflege
beinhaltet unter anderem die Verantwortung für die Therapie zu übernehmen (Ueno &
Kamibeppu, 2008). Viele Mütter treiben sich voran, obwohl sie wissen, dass sie sich
ausruhen sollten. Die Balance zu halten zwischen dem „weiterleben“ und „innehalten
Larissa Sauder
22
und auszuruhen“ ist eine zusätzliche Herausforderung für die Betroffenen (Evans & de
Souza, 2008). Auch müssen die Mütter ihr eigenes Bedürfnis nach Unterstützung im
Haushalt durch ihre Kinder und deren Bedürfnisse nach Freiheit und Kontakt mit
Freunden ausbalancieren (Barlow et al., 1999).
Larissa Sauder
23
Larissa Sauder
Farber
(2000) Barlow
et al.
(1999) Halbstrukturierte
Interviews
Grounded Theory
1) 1 Querschnitt-studi
2) 3 Fokusgruppengesprächen
Mixed-Methode
Sequentiell erklärendes
Vorgehen
Studie 1989
Interviews
1) Zweitanalyse einer
Grounded Theory
Studie
2) Weiterführung der
Studie (nicht näher
bezeichnet)
Amerikanische Mütter (n=8), 6 Weisse, 2
Zerebrale Lähmung
Afroamerikanerinnen, Altersrange: 31-55 Jahre, Skoliose
2 Multiple Sklerose,1 Multiple Sklerose&Diabetes Niereninsuffizienz
mellitus, 1 Zerebrale Lähmung, 1
Morbus Parkinson
Skoliose&Niereninsuffizienz, 1 Fibromyalgie, 1
Multiple Sklerose
Retinitis pigmentosa, 6 Diagnose vor erster
Diabetes
Schwangerschaft, 1 Diagnose nach
Fibromyalgie
1.Schwangerschaft, 1 Diagnose während
Retinitis pigmentosa
Schwangerschaft, 6 verheiratet, 2 single und
alleinerziehend 14 Kinder, 1-4 Kinder pro Mutter,
Altersrange: 9 Monate-12 Jahre
Beschreibung des
Lebens von Frauen,
welche durch eine
Behinderung
(aufgrund von
Krankheit und/oder
angeborene
Behinderung)
beeinflusst wurden im
Prozess von der
Entscheidung für
Kinder,
Schwangerschaft,
Geburt und späteren
Erziehung. 1) 77 Teilnehmer, davon 16 Mütter, von denen Multiple Sklerose
Beschreibung der
das Transkript verwendet wurde
Rheumatoide Arthritis Sorgen und Nöten von
2) Mütter (n=16), Altersrange: unbekannt, 5
Entzündliche
chronisch kranken
Multiple Sklerose, 4 rheumatoide Arthritis, 4 Darmerkrankungen Mutter in Bezug auf
entzündliche Darmerkrankungen, 3
Sklerodermie
sich selbst und ihre
Sklerodemie, 11 verheiratet, 2 verwitwet, 3
Kinder getrennt von Ehemann, von den 2
Verwitweten und 3 Getrennten erzogen 4 die
Kinder allein, 9 waren krank während die
Kinder klein waren, 7 wurden erst krank, als
die Kinder 12 oder älter waren, Anzahl Kinder
unbekannt, Altersrange: unbekannt, 1-4
1) 360
Fragebögen
a) die Realität von
Kinder
pro Mutterverschickt an Mitglieder der Ankylosierende
„Nationalen Ankylosierende Spondylitis
Spondylitis
Müttern, Vätern
Gesellschaft“, eingeschlossen wurden nur
Rheumatoide Arthritis
und Grosseltern mit
jene mit einer bestätigten Diagnose und
Arthritis aus deren
Kindern (n=145), 98 Männer und 47 Frauen,
Perspektive zu
Altersrange: 24-80 Jahre,
erforschen
221 Kinder, Altersrange: 0-15 Jahre
b) zu ergründen, ob
2) Mütter, Väter, Grosseltern (n= unbekannt) mit
und welchen
Arthritis (rheumatoide Arthritis und
Einfluss Arthritis
Ankylosierende Spondylitis, Aufteilung
auf die Fähigkeit
unbekannt), Altersrange: nicht bekannt
zur Erfüllung der
Anzahl Kinder und Alter der Kinder ist nicht
Elternrolle hat
bekannt
Zweck/Ziel Throne
(1990) Krankheiten Stichprobe/Daten Referenz Methodologie
Methodik
Tabelle 4
Zusammenfassung der eingeschlossenen Studien
24
Larissa Sauder
25
Ueno&
Modifizierter
Kamibeppu Grounded Theory Ansatz
(2008)
Narratives Interview
Interviews
Japanische Mütter (n=20) mit einem
durchschnittlichen Alter von 43 Jahre, Schizophrenie
Affektive Störungen
mit Schizophrenie (n=13) oder
affektive Störungen (n=7), verheiratet
(n=14), geschieden/getrennt mit
alleinigem Sorgerecht (n=4),
verwitwet (n=1), ledig (n=1), 14
wohnen mit Ehemann zusammen, 6
allein mit Kindern
Anzahl Kinder nicht bekannt,
Altersrange: 0-18 Jahre
a) erforschen und
beschreiben der Praxis
der Elternschaft von
Mütter mit einer
chronischen psychischen
Erkrankung
b) Erfahrungen zu
identifizieren aus der
Sichtweise der Mutter,
welche einen Einfluss
haben auf die Erziehung
im Alltag
a) zu verstehen, welche
Herausforderungen
Mütter mit chronischen
Schmerzen und ihre
Kinder begegnen
b) und wie sie diese
bewältigen
c) Diskussion über die
gegenseitige
Beeinflussung des
Gesundheitszustandes
(Mutter und Kinder) durch
die chronischen
Schmerzen der Mutter
Framework Ansatz
Gewinn und Verlust Analyse
nach Baltes 1997
Evans &
de Souza
(2008) Neuseeländische, weisse Mütter
Chronische,
(n=16), Altersrange: 27-45 Jahre, mit einschränkende
Lupus (n=1), Arthritis (n=1),
Schmerzen Polyzystisches Ovarialsyndrom (n=1),
Migräne (n=2), Repetiv Strain Injury
(n=2), Rückenschmerzen (n=9),
Dauer der Schmerzerkrankung: 2-20
Jahre, 12 Mütter nehmen regelmässig
Medikamente deswegen ein,
21 gesunde Kinder (7 Mädchen/14
Knaben), Altersrange: 6-12 Jahre
Halbstrukturierte Interviews
Phänomenologischer Ansatz
Britische, weisse Mütter (n=7),
Rheumatoide Arthritis a) Gewinnung von Wissen
Altersrange: 28-41 Jahre, mit
über das Erleben der
rheumatoider Arthritis, Dauer der
Gesundheit und die
Erkrankung: 3-11Jahre, 5 verheiratet,
Erfahrungen von Mütter
2 single, 1 Vollzeit arbeitstätig, 2
mit rheumatoider Arthritis
Teilzeit arbeitstätig, 4 nicht arbeitstätig
b) Gesundheitspersonal zu
10 gesunde Kinder (n=3 mit 2, n=4 mit
informieren, wie sie diese
1), Altersrange: 1-7 Jahre
Frauen unterstützen
können bevor und
nachdem sie Mütter
geworden sind
Zweck/Ziel Mitton
et al.
(2007) Krankheiten Stichprobe/Daten Referenz Methodologie
Methodik
Larissa Sauder
26
Literaturreview
Vallido
et al.
(2010) Halbstrukturierte
Interviews Interpretativer
qualitativer Ansatz
Wadd
et al.
(2014) Morbus Crohn
Brustkrebs
Hirntumor
Kardiomyopathie
Lungenfibrose
Bipolare Störung
Depression
Schizophrenie
Epilepsie 6 HIV/AIDS
3 Krebserkrankungen
3 Psychische
Erkrankungen
1 Entzündliche
Arthritis
Krankheiten Australische Mütter (n=4), Altersrange: nicht
Terminale
bekannt, 2 verheiratet mit arbeitendem Ehemann, Niereninsuffizienz 2 alleinerziehend, 3 Heimhämodialyse, 1
Nachtdialyse, 1 im Spital (Montag-MittwochFreitag Morgen),
Anzahl Kinder nicht bekannt, Altersrange: 0-18
Jahre, 1 Kind behindert Qualitative
Weisse, englischsprechende Mütter (n=10), 9
Storytelling Methode Australierinnen, 1 Amerikanerin, Altersrange: 25Interviews
59 Jahre, 4 mit physischer Erkrankungen, 3
psychischen Erkrankungen, 3 mit beidem,
6 verheiratet, 2 geschieden, 1 verlobt, 1 single
21 Kinder, Altersrange: 3-34 Jahre Synthese nach Popey et al. 2006
13 Studien:
6 Grounded Theory
2 Ethnographische Studien
1 Inhaltsanalyse
1 Phänomenologische Studie
1 Qualitative Zweitanalyse
1 Narrative Analyse
1 Feministische Nachkriegszeittheorie
CINHAL, Medline, PsychInfo, Scopus,
Soziologische Abstracts
Stichprobe/Daten Power
et al.
(2011) Critical Appraisal
Methodologie
Methodik
Referenz Beschreibung der
Erfahrungen/Erleben
von Mütter, welche
Hämodialyse benötigen Beschreibung der
Erfahrung/Erleben von
chronisch kranken
Mütter und welche
soziale Unterstützung
sie erhalten Übergeordnete
Themen/Kategorien zu
finden, um
Pflegefachpersonen im
Bereich der Pflege von
Mütter weiterzubilden
Untersuchung der
bestehenden qualitativen
Literatur, welche sich mit
der Erfahrung
„Störung/Unterbrechung
im Mutter sein aufgrund
einer Krankheit“
befassen.
Zweck/Ziel 5
Diskussion
In diesem Kapitel werden verschiedene Aspekte der einzelnen Studien unter Einbezug
weiterführender Literatur kritisch diskutiert. Zuerst wird die Güte der Studien vorgestellt
und anschliessend verschiedene methologische Inhalte bezüglich Gemeinsamkeiten
und Unterschiede beschrieben. Darauf findet eine Diskussion über Mutterschaft,
Mutterbild, Krankheit und Transition statt. Das Kapitel schliesst mit den Konsequenzen
für die Praxis ab.
5.1
Qualität und Limitationen der Studien
Nach DiCenso et al. (2009) waren acht Studien „Single Studies“ oder originale
Forschungsartikel und die Literaturreview von Vallido et al. (2010) eine „Synopses of
Single Studies“. Das heisst, die Studien sind in der untersten respektive zweituntersten
Stufe der Pyramide anzusiedeln. Dies lässt sich dadurch erklären, dass es Ziel dieser
Bachelorarbeit war primär wissenschaftliche Studien zu inkludieren. Aufgrund der
höheren Stufeneinschätzung nach Dicenso et al. (2009) wird die Literaturreview mehr
gewichtet und wird daher tiefer analysiert. Obwohl es in der Einschätzung nach
Behrens und Langer (2009) valide abschneidet, fallen zwei zentrale Mängel auf.
Erstens, wurde durch die Recherche zu dieser Bachelorarbeit sechs weitere relevante
Studien zum Thema gefunden. Es ist nicht klar, weshalb diese, welche ebenfalls
anderweitig zitiert wurden, nicht ins Review eingeschlossen wurden. Zweitens,
beschreiben fünf dieser sechs nicht eingeschlossenen Studien das Thema der sozialen
Unterstützung. Trotz dieser Präsenz wird in der Literaturreview von Vallido et al. (2010)
nichts zu diesem Thema erläutert.
Insgesamt wurden alle neun Studien als sehr vertrauenswürdig, glaubhaft,
aussagekräftig und anwendbar eingeschätzt. Auffällig ist, dass alle Studien, unabhängig
von Publikationsalter und Herkunft, homogene Resultate liefern. Als Limitation der
Studien ist erwähnenswert, dass der Forschungsprozess teilweise intransparent war.
Zum Beispiel fehlt die Beschreibung der Zitation der Teilnehmerinnen (Barlow et al.,
1999; Evans & de Souza, 2008; Farber, 2000; Throne, 1990; Ueno & Kamibeppu, 2008)
oder die einzelnen Schritte des Analyseprozesses sind nicht schlüssig beschrieben
(Mitton et al., 2007; Throne, 1990).
Larissa Sauder
28
5.2
Gemeinsamkeiten und Unterschiede der Studien
Die Studien von Throne (1990), Vallido et al. (2010) und Wadd et al. (2014)
untersuchten die Population chronisch kranker Mütter mit dem Fokus auf das Erleben.
Die anderen sechs Studien erforschten das Erleben der Population aus verschiedenen
Blickwinkeln, wie der Beeinflussung der Fähigkeit zur Erfüllung der Elternrolle (Barlow
et al., 1999), dem Prozess der Mutterschaft (Farber, 2000), der Beeinflussung der
Mutterrolle (Mitton et al., 2007), der Bewältigung der Herausforderung als Mutter
chronisch krank zu sein (Evans & de Souza, 2008) und der sozialen Unterstützung
(Power et al., 2011).
Alle Studien hatten einen qualitativen Ansatz oder Anteil und erhoben ihre Daten durch
narrative oder halbstrukturierte Interviews und Fokusgruppengespräche. Drei Studien
sind Grounded Theories (Throne, 1990; Farber, 2000; Ueno & Kamibeppu, 2008), eine
ist eine phänomenologische Studie (Mitton et al., 2007), eine verfolgte einen
Framework Ansatz (Evans & de Souza, 2008), eine ist eine Mixed-Methode Studie
(Barlow et al., 1999), eine benutzte die Storytelling Methode (Power et al., 2010) und
eine einen interpretativen Ansatz (Wadd et al., 2014). Die Literaturreview von Vallido et
al. (2010) schlossen sechs Grounded Theories, zwei ethnographische Studien, eine
Inhaltsanalyse, eine phänomenologische Studie, eine qualitative Zweitanalyse und eine
narrative Analyse ein (siehe auch Tabelle 4).
Die Population waren Frauen im Alter zwischen 25 und 59 Jahren mit 1 bis 4 Kindern,
welche zwischen 0 und 34 Jahren waren. Damit entsprach die Charaktersitik der
Population den Erwartungen. Als aussergewöhnlich zeigt sich das Alter der Kinder,
welches eine grosse Zeitspanne aufzeigt. Dieser Punkt wird im nächsten Kapitel näher
besprochen.
5.3
Mutterschaft, Krankheit, Transition und Mutterbild
Die eingeschlossenen Studien zeigen über eine Zeitspanne von 24 Jahren (1990-2014)
eine hohe Homogenität der Ergebnisse auf. Daraus kann geschlossen werden, dass
sich das Erleben von chronisch kranken Müttern innerhalb dieser Zeit ähnelt. Dies deckt
sich mit der Theorie nach Meleis et al. (2000), dass Mutterschaft oder chronische
Krankheit nicht etwas situatives, sondern ein dynamischer Verlauf und eine konstante
Transition ist. Die Frauen sind von einer „multiplen“ (Mutter und Patientin) und
„simultanen“ Transition betroffen. In der Kategorie „Anpassung der Mutterrolle“ kommt
Larissa Sauder
29
diese Art der Transition gut durch die Anpassung der Mutterrolle aufgrund der
Einschränkungen der Krankheit (Patientin) und durch das Älterwerden der Kinder
(Mutterschaft) zum Vorschein. Das Alter der Kinder hat einen grossen Einfluss darauf,
wie Frauen das Mutter- und chronisch Kranksein erleben (Throne, 1990; Barlow et al.,
1999; Farber, 2000; Mitton et al., 2007; Evans & de Souza, 2008; Ueno & Kamibeppu,
2008; Wadd et al., 2014). Im Säuglingsalter bis zur mittleren Kindheit stellen die
physischen Einschränkungen der Mutter, wie zum Beispiel Immobilität, Fatigue,
Schmerzen, aufgrund der körperlichen Abhängigkeit des Kindes zur Mutter ein
zentrales Problem dar (Barlow et al., 1999). In der mittleren Kindheit bis zur Adoleszenz
stellen sich mehrheitlich psychische Thematiken in den Vordergrund. Die Mütter werden
damit konfrontiert, wie die Kinder das Aufwachsen mit der Krankheit der Mutter erleben
(Throne, 1990). Durch diesen Prozess wird die Mutter zur Selbstreflexion
herausgefordert (Barlow et al., 1999). Die stetige Veränderung der Bedürfnisse des
Kindes durch dessen Entwicklung hat einen direkten Einfluss auf die Mutter (Farber,
2000). Wadd et al. (2014) schreiben, dass es für die Mütter durch das Älterwerden der
Kinder leichter würde, leider ohne Angaben dazu anzugeben, warum dies sin sein
sollte. Francis-Connolly (2000) verdeutlicht in ihrer Studie über die Stufen der
Mutterschaft vielmehr, dass die zentralen Aufgaben in der Erziehung wie Pflege,
Ernährung und Lehren fortlaufend sind und sich nur im Inhalt ändern, aber nicht im
Grundcharakter. Mercer (2004) untersuchte die Transition „Mutter werden“ und hält fest,
dass dies eine lebensverändernde Erfahrung und Mutter zu sein eine lebenslange
Entwicklung ist.
Meleis et al. (2000) beschreiben Transition, als ein Beginn von Instabilität hin zu einer
erneuten Stabilität. Die Sehnsucht nach dieser erneuten Stabilität wird in verschiedenen
Studien beschrieben (Faber, 2000; Mitton et al., 2007; Wadd et al., 2014). Um diese
Stabilität wieder zu erlangen, wird in den Studien das „Reaktionsmuster“ „putting on a
brave face“ oder „happy face“ beschrieben (Throne, 1990; Mitton et al. 2007; Wadd et
al., 2014). Die Strategie „gute Miene zum bösen Spiel“ zielt auf das Erlangen von
Normalität ab. Chronisch kranke Mütter möchten als „normal“ und „nicht anders“
wahrgenommen werden (Farber, 2000). Die Bewältigungsform, etwas verschleiern zu
müssen, spiegelt den hohen Erwartungsdruck der Gesellschaft und der Mütter an sich
selbst wider. Das Mutterbild ist geprägt von der Vorstellung der konstanten
Verfügbarkeit der Mutter trotz zum Beispiel Beruf oder Krankheit (Held, 1983;
Larissa Sauder
30
Heidinger, 2010) und Selbstlosigkeit sowie Selbstverwirklichung (Wearing, 1984;
Heidinger, 2010). Die mütterliche Rollenverpflichtung kann deswegen als „mütterlichen
Masochismus“ bezeichnet werden (Rubin, 1984). Dieses für gesunde Mütter schon
nicht zu erfüllende Mutterbild ist für chronisch kranke Mütter ein entmutigender
Anspruch. Throne (1990) bringt es auf den Punkt: „[...] es ist klar, dass diese beiden
Rollen [Mutter und Patientin] unvereinbar sind.“ (S.218). Barlow et al. (1999)
beschreiben, was dieser überwältigende Anspruch bei den betroffenen Müttern auslöst.
Sie sind mit negativen Gefühlen, wie zum Beispiel Frustration und Schuldgefühlen
erfüllt. Hinzukommt das Gefühl, den gesellschaftlichen Erwartungen, welche an ihre
Mutterrolle gestellt werden, nicht gerecht werden zu können. Diese Ergebnisse zeigen
die Auswirkungen der Diskrepanz zwischen der Idealvorstellung des Mutterbildes und
der Realität.
5.4
Konsequenzen für die Praxis
In der Betreuung von chronisch kranken Müttern ist die Reflektion des Mutterbildes eine
zusätzliche Notwendigkeit. Darin können individuelle oder gesellschaftliche illusorische
Vorstellungen identifiziert und ein an die Realität angepasstes Mutterbild angestrebt
werden (Farber, 2000). In verschiedenen Studien kommt zum Ausdruck, wie sich das
gesellschaftliche idealisierte Mutterbild auf das Erleben der chronisch kranken Mütter
auswirkt (Throne, 1990; Barlow et al., 1999; Farber, 2000; Mitton et al., 2007; Vallido et
al., 2010; Wadd et al., 2014). Durch die Anpassung des Mutterbildes, so wie oben
beschrieben wird, kann die Gesellschaft einen wesentlichen Beitrag für ein neues,
adäquates Verständnis von Muttersein leisten. Heidinger (2010) spricht in ihrer Analyse
sogar von einem Mangel eines zeitgemässen Mutterbildes und fordert die Schaffung
eines neuen Bewusstseins und die Neustrukturierung von Muttersein. Es soll eine
Entkoppelung zwischen Muttersein und Frau sein stattfinden. Dadurch wird es möglich
Muttersein als Fähigkeit aus der Sichtweise was Kinder benötigen, zu definieren.
Ebenfalls findet dann eine Verlagerung statt, sodass Mütterlichkeit als eine
geschlechterunabhängige menschliche Haltung und soziale Ressource verstanden
werden kann (Heidinger, 2010).
Neben der Reflexion des Mutterbildes ist es essentiell, beide Realitäten, jene als Mutter
und jene als Patientin, in der Behandlung zu berücksichtigen (Throne, 1990). Leider ist
es jedoch auch 20 Jahre nach dieser Erkenntnis eine unveränderte Problematik, dass
Larissa Sauder
31
das Gesundheitspersonal der Identität als Mutter wenig bis keine Aufmerksamkeit
schenkt (Vallido et al., 2010). Ein möglicher Grund könnte das Reaktionsmusters
„putting on a brave face“ sein. Durch diese Reaktion schätzt das Gesundheitspersonal
die Situation falsch ein und notwendige Hilfe wird nicht angeboten. Die
Pflegefachpersonen sind durch die pflegetherapeutische Beziehung in einer guten
Lage, den Bedürfnissen von chronisch kranken Müttern gerecht zu werden (Throne,
1990; Mitton et al., 2007; Ueno & Kamibeppu, 2008; Vallido et al., 2010; Power et al.,
2011; Wadd et al., 2014). Chronisch kranke Frauen mit Kindern wollen primär als
Mutter und nicht als Patientin wahrgenommen werden (Vallido et al., 2010).
Pflegefachpersonen sollten also die Pflege an der primären Identität als Mutter
orientieren. Durch die Anerkennung der Mutterrolle und der Leistungen der Mutter und
ihrer Familie werden die pflegetherapeutische Beziehung sowie die Betroffenen selbst
gestärkt und ermöglicht neue Lösungsansätze zu entwickeln (Wright & Leahey, 2014).
Eine konkrete Möglichkeit wäre, den Mütter Raum anzubieten, um über ihre Kinder oder
Schwierigkeiten im Muttersein zu sprechen (Vallido et al., 2010). Die Haltung für ein
solches Gespräch soll eine „wohlwollende Neugierde” sein (Wright & Leahey, 2014).
Eine chronische Krankheit betrifft, wie in Kapitel 3.2 erläutert, die ganze Familie und
weitere Ebenen des Lebens (Morof Lubkin & Larsen, 2002; Wright & Leahey, 2014).
Aus diesem Grund ist das Instrument „Geno-, Öko und Beziehungsdiagramm“ des
CFIM sehr hilfreich, um Ressourcen zu erfassen und ungenutzte Möglichkeiten zu
eruieren. Weiter kann die Pflege als Schnittstelle dienen, um andere notwendige soziale
Unterstützung zu organisieren (Vallido et al., 2010; Power et al., 2011).
Aus diesen Gründen ist es sinnvoll, den familienzentrierten Ansatz nach Wright und
Leahey (2014) in das Leitbild einer Institution einzuarbeiten. Das Modell überzeugt
weiter durch die Definition „Familie“, welche den unterschiedlichen Familienformen der
heutigen Gesellschaft gerecht wird. Es leistet dadurch einen Beitrag zur Anpassung des
Mutterbildes.
Weiter ist es sinnvoll, speziell für Pflegefachpersonen, welche chronisch kranke Mütter
betreuen, eine Weiterbildung zur Transition Theorie nach Meleis et al. (2000) zu
ermöglichen. Dies ermöglicht den Pflegefachpersonen die Zeichen der Transition zu
erkennen und sind fähig zwischen einer erfolgreichen, verlängerten oder negativen
Transition zu unterscheiden.
Larissa Sauder
32
In der Praxis bringen chronisch kranke Mütter ihre Kinder aufgrund fehlender
Alternativen zur Konsultation mit. Eine ungestörte und fokussierte Besprechung sowie
Untersuchung ist deswegen oft kaum möglich. Eine grosse Hilfe würde eine kostenlose
Kindertagesstätte, wie sie beispielsweise in grossen Einkaufshäusern vorhanden sind,
darstellen. So könnten sie die Kinder unkompliziert während der Konsultation und / oder
Therapien in ein sicheres Umfeld abgeben. Dies würde den Müttern ermöglichen ihren
Rollen, als Mutter und Patientin, gerecht werden.
Larissa Sauder
33
6
Schlussfolgerung
Mütter durchleben aufgrund einer chronischen Erkrankung einen Unterbruch der
Kontinuität im Muttersein was sie zu einer Anpassung ihrer Mutterrolle zwingt. Sie
selbst beschreiben sich primär als Mütter und erst dann als Patientinnen. Chronische
Krankheit betrifft die ganze Familie, so dass die Pflege einen familienzentrierten Ansatz
verfolgen sollte. Dem Mutter- und chronisch Kranksein ist eine multiple, simultane und
anhaltende Transition immanent, welche eine ausgeprägte Vulnerabilität erzeugt.
Die Fragestellung wie Frauen ihr Mutter- und chronisch Kranksein erleben, konnte
somit ausführlich beantwortet, konkrete Konsequenzen für die Pflegepraxis sowie die
Rolle und Verantwortung der Gesellschaft aufgezeigt werden.
Aus dieser Bachelorarbeit kann geschlossen werden, dass es ausreichend
Forschungresultate, Theorien sowie Modelle zur Verbesserung der Betreuung von
chronisch kranken Müttern und deren Zufriedenheit gibt. Jedoch ist die Implemtierung
dieser Forschung und dieser theoretischen Entwicklungen sehr mangelhaft.
7
Limitationen der Bachelorarbeit
Diese Bachelorarbeit ist eine systematisierte Literaturrecherche und kein
systematisches Review. Das heisst, dass die Literatursuche nicht mit einer anderen
Person trianguliert und möglicherweise relevante Literatur nicht erfasst wurde. Alle
eingeschlossenen Studien sind in englischer Sprache verfasst. Mögliche
Übersetzungsfehler sind nicht ausgeschlossen. Die Fragestellung zielte zwar primär auf
qualitative Literatur ab, es wurden aber ebenfalls quantitative Studien gefunden, welche
jedoch aufgrund des limitierten Umfanges nicht berücksichtigt werden konnten.
Larissa Sauder
34
Literaturverzeichnis
Bachmann, N., Burla, L. & Kohler, D. (2015). Gesundheit in der Schweiz - Fokus
chronische Erkrankungen. Nationaler Gesundheitsbericht. Neuchâtel: OBSAN.
Backman, C. L., Del Fabro, L. S., Smith, S., Montie, P. L. & Suto M. (2007).
Experiences of mothers living with inflamatory arthritis. Arthritis & Rheumatism, 57,
381-388. doi:10.1002/art.22609
Barlow, J. H., Cullen, L. A., Foster, N. E., Harrison, K. & Wade, M. (1999). Does arthritis
influence perceived ability to fulfill a parenting role? Patient Education and
Counseling, 37, 141-151. doi:10.1016/S0738-3991(98)00136-0
Behrens, J., Langer, G., Corbin, J., Ciliska, D. & Tappeiner, W. (2010). Evidence-based
nursing and caring: Methodik und Ethik der Pflegepraxis und
Versorgungsforschung. Bern: Hans Huber.
Bundesamt für Statistik (2015). Bevölkerungsstand und -struktur. Heruntergeladen von
http://www.bfs.admin.ch/bfs/portal/de/index/themen/01/02/blank/key/frauen_und_m
aenner.html am 12.11.15
Bundesamt für Statistik (2012). Schweizerische Gesundheitsbefragung.
Heruntergeladen von:
http://www.bfs.admin.ch/bfs/portal/de/index/themen/14/02/01/key/01/01.html am
12.11.15
DiCenso, A., Bayley, L. & Haynes, R. B. (2009). Accessing pre-appraised evidence:
Fine-tuning the 5S model into a 6S model. Evidence-Based Nursing, 12, 99-101.
doi:10.1136/ebn.12.4.99-b
Duden. (2014). Die deutsche Rechtschreibung. Das umfassende Standardwerk auf der
Grundlage der amtlichen Regeln. Berlin, Mannheim, Zürich: Bibliographisches
Institut. doi:978-3411046508
Evans, S. & de Souza, L. (2008). Dealing with chronic pain: Giving voice to the
experiences of mothers with chronic pain and their children. Qualitative Health
Research, 18, 489-500. doi:10.1177/1049732308315433
Farber, R. S. (2000). Mothers with disabilities: In their own voice. American Journal of
Occupational Therapy, 54, 260-268.
Larissa Sauder
36
Francis-Connolly, E. (2000). Toward an understanding of mothering: A comparison of
two motherhood stages. The American Journal of Occupational Therapy, 54, 281289.
Grove, S. K., & Burns, N. (2009). The practice of nursing research (Vol. 6). St. Louise,
Missouri: Saunders Elsevier.
Haslbeck, J., Klein, M., Bischofberger, I. & Sottas, B. (2015). In Diebold M., Kickbusch
I., Paccaud D. & Zeltner T. (Hrsg.), Leben mit chronischer Krankheit. Die
Perspektive von Patientinnen, Patienten und Angehörigen (OBSAN dossier 46).
Neuchâtel: Schweizerisches Gesundheitsobservatorium. doi:978-2-940502-45-5.
Heidinger, I. (2010). Das Prinzip Mütterlichkeit – geschlechterübergreifende soziale
Ressource gegenstandstheoretische und handlungsorientierte Perspektiven.
Wiesbaden: Verlag für Sozialwissenschaften. doi:10.1007/978-3-531-92401-4
Held, V. (1983). The obligations of mothers and fathers. In J. Treblicot (Hrsg.),
Mothering: Essays in Feminist Theory, (S.9-20). Totowa, New Jersey: Rowman &
Allenheld.
Lincoln, Y. S. & Guba E. G. (1985). Naturalistic inquiry. Beverly Hills: Sage Publications.
LoBiondo-Wood, G., & Haber, J. (2005). Pflegeforschung: Methode, Bewertung,
Anwendung. München: Urban & Fischer.
Meleis, A. I. (2010). Transitions theory. Middle-range and situations-specific theories in
nursing reasearch and practice. New York: Springer Publishing Company.
Meleis, A. I., Sawyer, L. M., Im, E., Messias, D. K. H. & Schumacher, K. (2000).
Experiencing transitions: An emerging middle-range theory. Advances in Nursing
Science, 23, 12-28.
Mercer, R. T. (2004). Becoming a mother versus maternal role attainment. Journal of
Nursing Scholarship, 36, 226-232.
Mitton, D. L., Treharne, G. J., Hale, E. D., Williams, R. A. & Kitas, G. D. (2007). The
health and life experiences of mothers with rheumatoid arthritis: A
phenomenological study. Musculoskeletal Care, 5, 191-205. doi:10.1002/msc.116
Morof Lubkin, I. & Larsen, P. (2002). In R. Lorenz-Krause & H. Niemann (Hrsg.),
Chronisch Kranksein: Implikationen und Interventionen für Pflege- und
Gesundheitsberufe. Bern: Hogrefe. doi:978-3-456-83349-1
Larissa Sauder
37
Power, T., Jackson, D., Weaver, R. & Carter, B. (2011). Social support for mothers in
illness: A multifaceted phenomenon. Contemporary Nurse, 40, 27-40.
doi:10.5172/conu.2011.40.1.27
Rubin, N., & Stuart, N. R. (1984). The mother mirror: How a generation of women is
changing motherhood in america. New York: Putnam Publishing Group.
Throne, S., E. (1990). Mothers with chronic illness: A predicament of social
construction. Health Care for Women International, 11, 209-221.
doi:10.1080/07399339009515889
Tomm, K. & Sanders, G. (1983). Family assessment in a problem oriented record. In J.
C. Hansen & B. F. Keeney (Hrsg.), Diagnosis and Assessment in Family Therapy,
(S.101-122). London: Aspen Systems Corporation.
Ueno, R. & Kamibeppu, K. (2008). Narratives by Japanes mothers with chronic mental
illness in the Tokyo metropolitan area: Their feeleing toward their children and
perceptions and their childrens’s feelings. The Journal of Nervous and Mental
Disorder, 196, 522-530. doi:10.1097/NMD.0b013e31817cf721
Vallido, T., Wilkes, L., Carter, B. & Jackson, D. (2010). Mothering disrupted by illness: A
narrative synthesis of qualitative research. Journal of Advanced Nursing, 66, 14351445. doi:10.1111/j.1365-2648.2010.05350.x
Wadd, K. M., Bennett, P. N. & Grant, J. (2014). Mothers requiring dialysis: Parenting
and end-stage kidney disease. Journal of Renal Care, 40, 140-146.
doi:10.1111/jorc.12066
Wearing, B. (1984). The ideology of motherhood: A study of sydney suburban mothers.
Sydney: George Allen & Unwin.
World Health Organisation (2011). Noncommunicable diseases country profiles 2011.
Geneva: World Health Organization.
Wilson, S. (2007) ‘When you have children, you’re obliged to live’: motherhood, chronic
illness and biographical disruption. Sociology of Health & Illness, 29, 610-626. doi:
10.1111/j.1467-9566.2007.01008.x
Wright, L. M. & Leahey, M. (2014). In B. Preusse-Bleuler (Hrsg.), Familienzentrierte
Pflege. Lehrbuch für Familien-Assessmetn und Intervention. Bern: Hans Huber.
doi:978-3-456-85306-2
Larissa Sauder
38
Abbildungsverzeichnis
Abbildung 1
Flowchart......................................................................................................................6
Abbildung 2
Beispiel eines Geno-, Öko- und Beziehungsdiagramm................................................8
Abbildung 3
Calgary Familien Assessment Modell (CFAM).............................................................9
Abbildung 4
The Midrange Transition Theory from Meleis et al. (2000)........................................10
Tabellenverzeichnis
Tabelle 1
Keywords......................................................................................................................4
Tabelle 2
Ein- und Ausschlusskriterien........................................................................................4
Tabelle 3
Übersicht der Kategorien............................................................................................12
Tabelle 4
Zusammenfassung der eingeschlossenen Studien....................................................21
Larissa Sauder
39
Wortzahl
Abstract:
198
Arbeit:
6131
(exklusive Abstract, Tabellen, Abbildungen, Literaturverzeichnis, Danksagung,
Eigenständigkeitserklärung und Anhänge)
Danksagung
Ich möchte mich bei allen bedanken, welche mich während dieser Bachelorarbeit
unterstützt haben. Im speziellen bei folgenden Menschen:
Martin Stäheli, für den ruhigen Arbeitsplatz und die liebevolle Ablenkungen
Bettina Imhof, für die produktive Zusammenarbeit und hilfreiche Kritik
Michelle Bruylands, für das erneute Zusammentreffen, effiziente Zusammenarbeiten
und Betreuung, sowie die Beurteilung trotz Mutterschftsurlaub
Sara Häusermann, für die konstruktiven Gruppentreffen und hilfreichen Tipps
Reto Sauder, für das Lektorat
Julia Barmettler, für die Erhaltung meiner inneren Balance
Nicole Oberholzer, als Prioritäten-Managerin
Eigenständigkeitserklärung
«Ich, Larissa Sauder, erklär hiermit, dass ich die vorliegende Arbeit selbständig, ohne
Mithilfe Dritter und unter Benutzung der angegebenen Quellen verfasst habe.»
Winterthur, April 2016
Larissa Sauder
Larissa Sauder
40
Anhang
Strukturierte Zusammenfassung und Würdigung nach Lincoln & Guba (1985) und DiCenso et al. (2009)
qualitativer Studien
Referenz: Throne, S.E. (1990). mothers with chronic illness. A predicament of social construction. Health care for
women international, 11, 209 – 221.
Einleitung/Zweck/
Ziel
Methode
Ergebnisse
Diskussion
In der ersten Studie
wurde nicht explizit
das Erleben von
chron. k M
untersucht. Das
häufige Vorkommen
der spezifischen
Themen veranlasste
Forscherin zu einer
Zweitanalyse und
Weiterführung der
Studie
1.
Problem der Durchführung
Zugehörig zur Mrolle sind Aktivitäten (Haushalt,
Esse zubereiten) oder Mrolle assoziierte
Aktivitäten (stricken, backen), diese sind
beeinträchtigt durch eingeschränkte Mobilität,
Fatigue
Gewisse Aufgaben kann man delegieren, vieles
kann niemand anderer übernehmen!
Problem der Verfügbarkeit
M glauben, dass die verminderte
Verfügbarkeit/Anwesenheit aufgrund der K und
NW, sich schlecht auf die Ki und neg auf ihr
Mbild bezgl Zuverlässigkeit auswirkt
Ein weiterer Punkt von Verfügbarkeit ist das
bewusst werden von der Endlichkeit und der
Konfrontation mit dem Tod. M sorgen sich, wer
für ihre Ki da ist, wenn sie es nicht mehr sind.
Sehr schuldig, wenn nicht verfügbar bei
wichtigen Anlässen!
Problem der Bedürftigkeit
Angst ihre Ki zu fest als unterstützung zu
„benutzen“
Ki unterstützen M sehr stark, moralisch und
emotional
Unterstützung halfen M K anzunehmen
Chance der Sozialisation
Durch K lernen Ki hilfsbereit/einfühlsam zu sein,
oder auch abstumpfend gegenüber Problemen
Fremder
K belastet die Kommunikation in der Fam, da
ständiges Thema
Problem mit Gesundheitspersonal
mangelndes Verständnis vom G, entweder M o.
Pat, nie beides!
nicht übereinstimmen der Prioritäten
wenig Unterstützung bei Adaptation,
unpassende Unterstützung, da Not nicht
anerkannt wird von G.
Wenn M als „funktionierend“ wahrgenommen
werde, wird Bedürftigkeit abgesprochen,
„funktionieren“ sie nicht schadet dies der
Glaubwürdigkeit als M mit mgl Verlust der Ki und
Sorgerechtentzug!
K muss im Kontext der
sozialen Situation, in
welcher sie auftritt,
verstanden werden
Das Bild der M ist
übersät mit
übermenschlichen
Anforderung, wie
konstante
Verfügbarkeit,
absolute
Verantwortlichkeit und
komplette
Selbstlosigkeit
M dürfen nicht krank
sein
Chron k und M sein
ergeben ein Konflikt
Gesundheitspersonal
müssen die
Bedürfnisse bezgl.
Unterstützung
identifizieren
Untersuchung der
Anliegen/Sorgen von
F mit chron. K und
Ki über Themen
Performance,
Verfügbarkeit,
Bedürftigkeit
Sozialisation und
Erfahrungen mit
dem
Gesundheitswesen
M und Pat. sein
2.
1.
2.
Zweitanalyse
Grounded Theory
Studie1989
Weiterführung der
Studie
Von total 77
Transkripten,
wurden 16 von
chron. k M mit
Kindern, welche
noch Zuhause
wohnten,
ausgewählt und
analysiert nach
Giorgi 1975
Halbstrukturierte
Interviews mit den
16 Mütter
Mütter (n=16),
Altersrange: unbekannt,
5 MS, 4 RA, 4
entzündliche
Darmerkrankungen, 3
Sklerodermie, 11
verheiratet, 2 verwitwet,
3 getrennt von
Ehemann, von den 2
Verwitweten und 3
Getrennten erzogen 4
die Ki allein, 9 waren
krank während die Ki
klein waren, 7 wurden
erst krank, als die Ki 12
oder älter waren, Anzahl
Ki unbekannt, Altersrange: unbekannt, 1-4 Ki
pro Mutter
Glaubwürdigkeit
Übertragbarkeit
Zuverlässigkeit
Bestätigbarkeit
+ Intensive Datenerhebung über
+ Detaillierte
- Datenanalyse ist nicht
+ Motivationsgründe der
mehrere Jahre
Beschreibung der
detailliert beschrieben
Forscherin sind
+ Triangulation durch Daten erste
Teilnehmerinnen
- Zitation nicht
beschrieben
Studie und neue Daten Interviews
+ gute Zitation
referenziert
- Umstände der Forschung
- kein Peer-Debriefing beschrieben
nicht beschrieben (Ethik,
- kein Member-Check beschrieben Finanzen)
Vertrauenswürdigkeit
Die Ergebnisse der Studie sind nachvollziehbar und detailliert beschrieben. Sie decken sich mit anderer Literatur und
beschreiben die Realität der Teilnehmerinnen zugänglich.
Hierarchie Pyramide nach Di
Single studies (Original article) Censo et al.
Abkürzungen:Fam=Familie, G=Gesundheitspersonal, K=Krankheit, Ki=Kinder*, M=Mutter*, MS= Multiple Sklerose,
NW=Nebenwirkungen, RA= Rheumatoide Arthritis
Larissa Sauder
42
Referenz: Barlow, J. H., Cullen, L. A., Foster, N. E., Harrison, K. & Wade M. (1999). Does arthritis influence
perceived ability to fulfill a parenting role? Perceptions of mothers, fathers and grandparents. Patient Education and
Counseling, 37, 141 – 151.
Einleitung/Zweck/Ziel
Frühere Forschung
fokussierte den Effekt
von K auf das
Individuum und nicht
auf ein ganzes
soziales Konstrukt
Die Natur von Chron K
fordert Individuen und
deren Familien täglich
heraus in der
Bewältigung. Sie
strapaziert die
physischen,
emotionalen und
finanziellen
Ressourcen bis zum
Limit ein jeder Familie.
c)
d)
die Realität von
M, Vätern und
Grosseltern mit
Arthritis aus
deren
Perspektive zu
erforschen
zu ergründen, ob
und welchen
Einfluss Arthritis
auf die Fähigkeit
zur Erfüllung der
Elternrolle hat
Haben (schmerzhafte,
behindernde)
chronische
Erkrankungen einen
Einfluss auf die
Erhaltung der
Fähigkeit der Erfüllung
der Elternrolle?
Glaubwürdigkeit
+ Triangulation durch
Mixed-Methode
+ Member Check bei
Fokusgruppe
Methode
Mixed-Methode
Sequentiell erklärendes
Vorgehen
3) 1 Querschnittstudie
4)
3
Fokusgruppengespr
ächen
1) 360 Fragebögen
verschickt an Mitglieder
der „Nationalen AS
Gesellschaft“,
eingeschlossen wurden
nur jene mit einer
bestätigten Diagnose und
Ki (n=145), 98 Männer
und 47 F, Altersrange: 2480 Jahre,
221 K, Altersrange: 0-15
Jahre
2) M, Väter, Grosseltern
(n= unbekannt) mit
Arthritis (RA und AS,
Aufteilung unbekannt),
Altersrange: nicht bekannt
Anzahl Ki und Alter ist
nicht bekannt
Tonband aufgenommen
Moderator und ein
Assistent für Feldnotizen
Dauer: max. 120min
Am Ende des Gesprächs
wurde eine
Zusammenfassung durch
die Teilnehmer
gegengelesen und
verifiziert.
Transkription inkl.
Feldnotizen, Analyse
nach Krueger
Ergebnisse
Querschnittstudie
72 Probleme mit heben, halten
62 Probleme mit spielen wegen:
Schmerz (55), Fatigue (55),
eingeschränkte Mobilität (15) dies
resultiert in: Frustration, Wut, dem
Gefühl der Unfähigkeit seine Rolle als
Elternteil zu erfüllen, Depression,
weniger Geduld für die Ki
Fokusgruppen
physische Limitation durch K
beeinflusst Kipflege stark, Nicht
Spielen können
praktische/pflege Themen Alter der
Ki hat einen Einfluss auf Ausmass der
Limitation
Soziale Faktoren K limitiert nicht nur
Physis, sondern auch die soziale
Reichweite, Kontakte
Emotionale Reaktion M fühlen sich
durch Unfähigkeit von Caring
frustriert, schuldig, wütend,
ungeduldig mit Ki, depressiv
Ki fordern von M Reflexion
Balance Bedürfnisse Ki, eigene
Not/Hilfe
Bildung K fördert bei Ki das
Sozialverhalten
Angst um Vererbung für alle P
schwierig
Sicherheit Durch physischer
Limitation Schwierigkeiten bei für
Sicherheit sorgen
Diskussion
M schultern die grösste Bürde
bezgl. Caring trotz der Limitation
durch K
Alter der Kinder beeinflusst die
Einschränkung/Möglichkeit der
M
Durch die zunehmende
Überbelastung fühlen sich M
entwickelt sie auch Gefühle der
Unzulänglichkeit. Das nicht
erfüllen können der „erwarteten“
Rolle belastet M stark
Dynamik von Krankheit und
Entwicklung der Kinder
Resultate von Väter und Grosseltern
nicht eingeschlossen in
Bachelorarbeit und darum nicht
beschrieben
Übertragbarkeit
+ gute Zitation
- mangelnde Beschreibung der
Teilnehmer beim Fokusgespräch
Zuverlässigkeit
+ Overlap Methode durch
Mixed-Methode
+ transparenter
Forschungsprozess
- Zitation nicht referenziert
Bestätigbarkeit
+ Finanzierung beschrieben
- Kein Vorstellung bei
Ethikkommission
beschrieben
- Keine Beschreibung von
Intressenskonflikten
Die Studie zeigt eine hohe Qualität aufgrund der Methodik und beschreibt nachvollziehbare Resultate. Die Ergebnisse
beantwortet die Forschungsfrage. Sie beschreiben die Realität der Teilnehmer detailliert und können auch quantitativ belegt
werden.
Hierarchie Pyramide nach Di Censo et al.
Single studies (Original article) Abkürzungen: AS=Ankylosierende Spondylitis, F=Frauen, G= Gesundheitspersonal, K=Krankheit, Ki=Kinder*,
M=Mutter*, NW=Nebenwirkungen, RA=Rheumatoide Arthritis
Larissa Sauder
43
Referenz: Farber, R. S. (2000). Mothers with disabilties: In their own Voice. American Journal of Occupational
Therapy, 54, 260-268.
Beschreibung des
Lebens von F, welche
durch eine B (aufgrund
von K und/oder
angeborene
Behinderung)
beinflusst wurden im
Prozess von der
Entscheidung zum
Kinderkriegen, zur
Schwangerschaft,
Geburt und späteren
Erziehung.
Methode
Grounded Theory
Halbstrukturierte Interviews
Dauer 1-2h, bei
Teilnehmerinnen zu Hause
Amerkianische M (n=8), 6
Weisse, 2
Afroamerikanerinnen,
Altersrange: 31-55 Jahre, 2
MS,1 MS &Diabetes mellitus,
1 Cerebrale Lähmung, 1
Skoliose&Niereninsuffizienz,
1 Fibromyalgie, 1 Retinitis
pigmentosa, 6 Diagnose vor
erster Schwangerschaft, 1
Diagnose nach
1.Schwangerschaft, 1
Diagnose während
Schwangerschaft, 6
verheiratet, 2 single und
alleinerziehend
14 Ki, 1-4 Ki pro M,
Altersrange: 9 Monate-12
Jahre
Glaubwürdigkeit
+ Member Check
beschrieben
+ Forscher setzt mit
Experten auseinander zur
Vorbereitung
+Referentielle Adäquatheit
durch
Literaturstützung/Verlgeich
Ergebnisse
Mütterliche Selbstbeschreibung
Je nachdem was in der Beschreibung
vorrang hat B oder M sein, beschreibt
die Akzeptanz ihrer Einschränkung
und wirkt sich pos/neg auf die
Bewältigung aus und ob sie sich als
anders oder gleich wie andere M
wahrnehmen. Die Realität zeigt
beides
Selbstbschreibung entweder stolz,
tröstend/stärkend oder sehnlicher
Wunsch oder beides
Wahrnehmung des
zwischenmenschlichen Umfeldes
Erleben von Förderung der
Normalisierung
- Rollenteilung: Ehemann übernimmt
Mrolle-Anteile, jedoch mit dem Gefühl
Verlust
- Unterstützung: Sicherung Ki,
Prof.Hilfe wird als hilfreich empfunden,
aber auch mit Gefühlen von Neid und
Ausgeschlossen werden (Die können
dem Ki etwas geben, was ich nicht
kann)
Ungefragte oder Überbordende Hilfe
(Fam oder Fremde) wird als Eingriff in
die Privatsphäre erlebt
- unterstützende mentale Einstellung
Erleben von Ausgrenzung und
Unzulänglichkeit
Mobilitätseinschränkung führt zur
Einschränkung des Sozialen
Umkreises
Soz.Gruppen helfen sich
verbunden/gleich zu fühlen
Stigmatisation der Ki,
Übertragbarkeit
+dichte Beschreibung der
Teilnehmerinnen
+plausible Zitation
Diskussion
Optimale Hilfe für chron.K
M führt zu einer
Verbesserung der
Funktion und
Lebensqualität
G müssen sich der
Erfahrungen von M
bewusst sein
(einschätzen), um die
Therapie/Unterstützung
anpassen zu können
M mit chron.K sind genau
so stark und veletzlich wie
andere M, meistern
andere
Herausforderungen
Gleichheit stärkt,
Ausgrenzung schwächt M
M haben übersteigertes
Mbild, welchem sie nicht
gerecht werden können,
was zu Frustration und
Schuld führt
Mbild unterscheidet sich
nicht von gesunden M!!!
G sollen diese Bilder
identifizieren und M
stärken in Anpassung
ihrer Ansprüche
Zuverlässigkeit
+transparent
Forschungsprozess
+Triangulation:
Literatur, Experten
- Zitation
mangelhaft
referenziert
-keine Limitationen
beschrieben
Bestätigbarkeit
+Vorstellung
der Studie an
Kongress
+ Finanzierung
beschrieben
Studie macht einen sehr vertrauenswürdigen Eindruck, durch die hohe Triangulation und Vortragung an einem
internationalen Kongress. Die Ergebnisse sind schlüssig und logisch nachvollziehbar. Die Studie ermöglicht ein
vertieftes Verständnis der Betroffenen und hat so ihr Ziel erreicht.
Single Studies (Original Article)
Abkürzungen: B=Behinderung, F=Frauen, K=Krankheit, Ki=Kinder*, M=Mutter*, MS=Multiple Sklerose
Larissa Sauder
44
Referenz: Mitton, D., Treharne, G.J., Hale, E.D., Williams, R.A. & Kitas, G.D. (2007). The health and life experience
of mothers with rheumatoid arthritis: A phenomenological study. Muskuloskeletal Care, 5(4), 191-205.
Mutterschaft/M sein
(motherhood) ist ein
individuelles Konzept,
welches durch K
beeinflusst wird
Wie beeinflusst RA
betroffene Frauen in
der Mrolle?
Methode
Qualitatives Design
Phänomenologische
Studie
Halbstrukturiertes
Interview mit gleichen
Autorin und Assistent
Dauer: 1-2h
Transkript Analyse nach
Colaizzi 1978
Britische, weisse M
(n=7), Altersrange: 2841 Jahre, mit
rheumatoider Arthritis,
Dauer der Erkrankung:
3-11Jahre, 5
verheiratet, 2 Single, 1
Vollzeit arbeitstätig, 2
Teilzeit arbeitstätig, 4
nicht arbeitstätig
10 gesunde Ki (n=3 mit
2, n=4 mit 1),
Altersrange: 1-7 Jahre
Glaubwürdigkeit
+Member Check
beschrieben
+Triangulation:
Besprechung innerhalb des
Forscherteams
Ergebnisse
Innere Stärke
Durch die Bewältigung des Alltages,
Erziehung, Arbeit mit RA entwickelten die
M eine innere Stärke
Religion, Bestimmung, Haltung nicht
aufegen, stärkt
Erhaltung von Unanbhängigkeit und ihrer
Identität ist für M enorm wichtig
Depression
Verlust des alten Lebens, Frustration und
Angst vor Zukunft, Angst vor erneuter
SS/Ki, Vermindertes Selbstwertgefühl und
Körperbild durch SS
Kennzeichnung
M möchten Normalität trotz RA, sich nicht
zur K bekennen, wegen Diskreditierung
(auch bei Arbeit)
Versagen
Gefühl zu versagen als M und als F,
aufgrund mangelnder Mgl.
Mrollen/Aktivitäten zu übernehmen
(Haushalt, Ki halte wg Sz, Stillen)
Vor und Nach Geburt Aufklärung
M fühlen sich zu wenig informiert von G
(Auswirkungen, Probleme durch SS)
Keine Unterstützung, angepasstes Mobiliar
für chron.k M im Spital, mangelnde
Anerkennung von RA
Übertragbarkeit
+ dichte Beschreibung der Teilnehmer
+ treffende Zitation
Diskussion
M beschreiben, wie sie
Herausforderungen
bewältigen und dabei ein
„lächelndes Gesicht“
aufsetzte
M wollen Freiheit und
Uneingeschränktheit
erhalten
Studie zeigt, dass leben mit
chron. K nicht nur eine
physische, sondern auch
eine psychische
Herausforderung ist.
Zuverlässigkeit
+ Transparenter
Forschungsprozess
+Zitation referenziert
- mangelnde Begründung der
Entscheidungsschritte
- Subkategorien werden
mangelnd ausgearbeitet/erläutert
oder erst im Diskussionsteil
Bestätigbarkeit
+ Vorstellung bei
Ethikkommission
beschrieben
+ Finanzierung
beschrieben
Die Studie liefert gut Ergebnisse, welche nachvollziehbar sind und durch den Member-Check eine hohe Güte erreichen. Sie
beschreiben offen die Auswirkungen der K auf ihre Rolle als M und beantworten somit die Forschungsfrage. Das Design wurde
korrekt gewählt und logisch begründet.
Abkürzungen: G=Gesundheitspersonal, K=Krankheit, Ki=Kinder*, M=Mutter*, RA= Rheumatoide Arthritis,
SS=Schwangerschaft
Larissa Sauder
45
Referenz: Evans, S. & de Souza, L.(2008) Dealing with chronic pain: Giving voice to the experiences of mothers with
chronic pain and their children. Qualitative Health Research, 18(4), 489-500
Viele Studien über Sz
und Auswirkungen,
aber nicht über die
Population M
Ziel:
a) zu verstehen,
welche
Herausforderung
en M mit
chronischen
Schmerzen und
ihre Ki begegnen
b) und wie sie diese
bewältigen
c) Diskussion über
die gegenseitige
Beeinflussung
des
Gesundheitszust
andes (M und Ki)
durch die
chronischen
Schmerzen der M
Fokus auf positive
Auswirkungen oder
Nutzen
Methode
Qualitatives Design
Gewinn und Verlust
Analyse nach Baltes
1997
Halbstrukturierte
Interviews, Zuhause,
Dauer: 30 bis 90min,
Tonaufnahme,
Transkript,
Neuseeländische,
weisse M, (n=16),
Altersrange: 27-45
Jahre, mit Lupus
(n=1), Arthritis (n=1),
Polyzystisches
Ovarialsyndrom (n=1),
Migräne (n=2),
Repetiv Strain Injury
(n=2), Rückensz
(n=9), Dauer der
Szerkrankung: 2-20
Jahre, 12 M nehmen
regelmässig
Medikamente
deswegen ein,
21 gesunde Ki (7
Mädchen/14 Knaben),
Altersrange: 6-12
Jahre
Ergebnisse
Pflege für sich und andere übernehmen
Entwicklung von gegenseitiger
Empathie/Verständnis/Toleranz
Förderung Hilfsbereitschaft der Ki
Bildung und Lernen
Weiterbildung über eigene K führt zu
Empowerment
Stärkung des Selbstwerts durch Anerkennen der
eigenen Leistung trotz Sz
Bewältigungsstrategien
Bewusst sein dafür entwicklen, was man (noch)
kann trotz Sz, Vergl. mit Menschen denen es
schlechter geht
Sz stärkt das Innere Bewusstein
Für pos. Bewältigung ist soz.U. sehr hilfreich
Balance halten zwischen Bedürfnissen Ki und
den eigenen
Anpassung des Verhalten der Ki, wenn M sz hat
Sz als Bürde
Soz. Beziehungen leiden unter der mangelnden
Verfügbarkeit aufgrund der Sz
Verpassen
Soz. Events/Sport/Spielen/
Autofahren geht nicht, kleiner Bewegungsradius
verstärkt Phänomen
Essen zubereiten/alltägliches ist schwierig, M
fühlt sich schuldig, dass Ki etwas verpasst
Physische und Psychische Gesundheit
Aufgrund der physischen Limitation ist M frustiert
Elternschaft: Gegenseitige Beeinflussung
Aufgrund Einschränkunge, NW, Fatigue
mangelnde Fähigkeit Ki zu kontrollieren und
masszuregeln
Entwicklung von Strategien und Annahme von
Hilfe
Ki helfen der M emotional und im Haushalt
Diskussion
Trotz Auswirkungen in
alle Lebensbereiche
finden M und Ki
Strategien zur
Bewältigung
Sz der M beeinträchtigt
M UND Ki
Neg Auswirkung von Sz
auf Ki ist der Verlust
einer normalen Kiheit
Pos Auswirkung von Sz
ist Sensibilisierung, Zeit
für Ki,
Neg Auswirkung von Sz
ist Einschränkung Mob
und Probleme bei
mütterlichen Aufgaben
Möglichkeit zu wachsen
für die einten,
Hinternisse und Bürde
für die anderen
Chron Sz ist mehr als
ein einfacher Stressor
für M und Ki
Limitation: Ethnie (nur
Weisse), Kultur,
Schwierigkeit Interview
mit Ki, heterogene
Population fragliche
Übertragbarkeit
Glaubwürdigkeit
Übertragbarkeit
Zuverlässigkeit
Bestätigbarkeit
+/- Forschungsfrage nicht
+dichte Beschreibung der Teilnehmerinnen
+
+Vorstellung bei
explizit, aber genaue Ziel
+Ergebnisse sind nachvollziehbar
Forschungsprozess Ethikkommission
beschreibung
beschrieben
transparent
- Objektivität nicht
+korrektes Studiendesign
- wenig Zitationen
+ Analyseprozess
beschrieben Autoren sind
zum Ziel
beschrieben
Entwicklungspsychologin
+Datensammlung
- Zitation nicht
und Professorin für
detailliert beschrieben
referenziert
Rehabilitation
+/-Literaturrecherche
ersichtlich, Zeitpunkt nicht
benannt
-Datensättigung nicht
beschrieben
Vertrauenswürdigkeit: Die Studie zeigt eine hohe interne und externe Validität. Die Objektivität ist nur mangelhaft
einschätzbar.
Abkürzungen: K=Krankheit, Ki=Kinder*, M=Mutter*, NW=Nebenwirkungen, Schmerz=Sz
Larissa Sauder
46
Referenz: Ueno, R. & Kamibeppu, K. (2008). Narratives by japanese mothers with chronic mental illness in the
Tokyo metropolitan area. Their feeling toward their children and perception of their children’s feelings. The Journal of
Nervous an Mental Disease, 196(7), 522-530.
erforschen und
beschreiben der
Praxis der Elternschaft
von Mütter mit einer
chronischen
psychischen
Erkrankung
Erfahrungen zu
identifizieren aus der
Sichtweise der Mutter,
welche einen Einfluss
haben auf die
Erziehung im Alltag
Methode
Modifizierter
Grounded Theory
Ansatz
Narratives Interview
Japanische M
(n=20) mit einem
durchschnittlichen
Alter von 43 Jahre,
mit Schizophrenie
(n=13) oder affektive
Störungen (n=7),
verheiratet (n=14),
geschieden/getrennt
mit alleinigem
Sorgerecht (n=4),
verwittwet (n=1),
ledig (n=1), 14
wohnen mit
Ehemann
zusammen, 6 allein
mit Ki
Anzahl Ki nicht
bekannt,
Altersrange: 0-18
Jahre
Glaubwürdigkeit
+ Austausch mit anderen
Experten im Rahmen der
Vorbereitung der Interviews
+Triangulation: Austausch
innerhalb des Forscherteams
- kein Member Check beschrieben
Ergebnisse
Erziehung und Durchführung Selbstpflege:
Wenn sich die CPK verstärkt, dann behindert
dies die Erziehung. Darum haben die M
realisiert, dass ein solides Kmanagement
voraussetzung für die Erziehung ist.
Verantwortung der M mit CPK
Um die CPK im Griff zu haben sind die M für
eine adhärente Therapie verantwortlich.
Gedanken über die Balance zwischen
Selbstpflege und Kinderpflege
M meinen, dass gute Selbstpflege genau so
wichtig ist wie Kipflege. selbstpflege ist nicht
egoistisch, sondern absolut wichtig für M und Ki
Gefühl der Zuneigung für Ki: M lieben ihre Ki
und Ki zeigen, dass sie ihre M lieben, dies gibt
den M das Gefühl von Glück, Freude und
vertrauen in sich als M
Gefühl von Mitleid für Ki: M leiden darunter,
dass ihre K die Ki trauig macht. M sorgen sich,
ob ihrer Ki sie aufgrund der CPK ablehnen
könnten.
Mitleid, weil das Ki belastet wird durch CPK der
M
Bei stärkerer Symptomatik sind M nicht mehr in
der Lage auf ihre Ki einzugehen und ihren
Bedürfnissen gerecht zu werden
Mitleid, weil das Ki die M mit CPK sieht
Ki können nur schon am Tonfall erkennen, wie
es der M geht. Wenn es der M nicht gut geht,
fand ein Rückzug der Ki statt.
Mitleid, weil das Ki eine M mit CPK hat
Angst vor stigmatisierung der Ki aufgrund der K
der M
Frustriert sein und schlechte Erziehung: M
wissen, dass sie nicht das tun können, was sie
tuen möchten für Ki. Dies führt zu Frustration,
Hilflosigkeit, Gefühl der Mrolle nicht gerecht zu
werden.
Mitleid des Ki spüren: Ki unterstützen M
emotional, wenn es ihnen nicht gut geht.
Ki versteht die Belastung der M
Ki lernen die K verstehen und lernen die
Situationen einzuschätzen.
Ki zeigt Verständnis für die Belastung der M
Ki muntern ihre M auf, wenn es ihr nicht gut geht
und zeigen Verständnis und Ausdauer
Übertragbarkeit
+dichte Beschreibung der Teilnehmerinnen
+schlüssige Zitation
- kleines homogenes Sample
Diskussion
Es stellt eine grosse
Herausforderung dar,
gleichzeitig für seine K und
für seine Ki zu sorgen.
G berücksichtigen diese
grosse Belastung zu wenig.
G sollen systematisch die
Fam
analysieren/Assessment und
M nach Mrolle/Ki fragen, um
einen Austausch zu
ermöglichen.
Peer-unterstützung stärkt
Mliebe und Kiliebe stärkt die
M in ihrer Bewältigung
Sorgerechtsentzug und
Femdplatzierung der Ki
Limitationen:
Repräsentativität fraglich
aufgrund der Population, nur
kM
Zuverlässigkeit
+ transparent
beschriebener
Entscheidungsprozess
+ detaillierter
Forschungsprozess
-Zitation nicht
referenziert
Bestätigbarkeit
+Vorlegung der
Studie einer
Ethikkommission
Aufgrund der detaillierten Beschreibung des Forschungsprozesses und die schlüssigen Ergebnisse zeigt die Studie eine hohe
Vertrauenswürdigkeit. Die Forschungsfrage konnte ausführlich beantwortet werden.
Abkürzungen: CPK= chronische psychische Krankheit, G= Gesundheitspersonal, Ki=Kinder*, M=Mutter*,
Larissa Sauder
47
Strukturierte Zusammenfassung und Würdigung nach Behrens und Langer (2010) und DiCenso et al. (2009)
Referenz: Vallido, T., Wilkes, L., Carter B. & Jackson, D.(2010) Mothering disrupted by illness: a narrative synthesis
of qualitative researche. Journal of Advanced Nursing, 66(7), 1435-1445
Untersuchung der
bestehenden qualitativen
Literatur, welche sich mit
der Erfahrung
„Störung/Unterbrechung
im M sein aufgrund einer
Krankheit“ befassen.
Methode
Systematische
Lit.Suche 19802009, Datenbanken:
CINHAL, Medline,
PsychInfo, Scopus,
Soziologische
Abstracts
Übergeordnete
Themen/Kategorien zu
finden, um das G im
Bereich der Pflege von M
zu informieren.
323 gefundene
Studien, minus
Doppelte, minus
nicht englische
Sprache, minus nicht
qualitative Studien,
minus nicht aus
Perspektive der
Mutter
=14 gewürdigt,
minus mangelnde
Qualität
=13 Studien für
Review
eingeschlossen und
untersucht nach:
Wie stört/unterbricht
Krankheit die
Fähigkeit M zu sein?
Themen in Bezug
auf M sein während
K
Synthese nach
Popay et al. 2006
Glaubwürdigkeit
+ Einschlusskriterien formuliert und
angemessen
+Umfassende Datenerhebung auf
Datenbanken, langer Zeitraum
+ Güte sind geeignet eingeschätzt und
nachvollziehbar beschrieben
+/- Fragestellung nicht ausformuliert,
aber klar definiert durch das Ziel
+ homogene Studienauswahl
+Die Güte der eingeschlossenen
Papers wurde durch verschiedene
Forscher überprüft/verglichen
- Es werden nur engl. Daten untersucht
Hierarchie Pyramide nach Di Censo
et al.
Ergebnisse
Unterbruch im Muttersein
Störung im gewohnten Muttersein
durch K
Unterbruch im Msein durch K und
NW von K und Therapie
Unterbruch M trotz phys.
Anwesenheit
Anpassung der Mrolle
„manchmal kann ich, manchmal
kann ich nicht“= Anpassung an die
zur Verfügung stehenden
Fähigkeiten und Erwartungen
Auseinandersetzung was heisst gute
M, schlechte M, Verfügbarkeit und
Tod
Erleben von Schuld oder Scham
(Wording? Ungenügend sein)
Nicht für Ki sorgen zu können (wie
gewünscht/gewohnt) und K vererbt
zu haben führen zu Schuldgefühlen
Schuldgefühle sind zusätzliche
Belastung
Beschützen der Ki
M möchten Ki beschützen vor Leid,
abnormer Kiheit, Stigma, Verlust/Tod
Anpassung Therapie für Kinder
Schwierig Kommunikation/ Erzählen
von K und NW, Wie erzählen?
Erfahrungen mit dem G
Nicht als M wahrgenommen werden,
nicht ernst genommen werden
G werden als nicht hilfreich erlebt,
keine konkrete Hilfe/Rat
Leben zum M sein, M sein um zu
Leben
M möchten am Leben bleiben für
ihre Ki
Aussagekraft
+ Stepwise Replication: die
Kategorien wurden parallel durch
verschiedene Autoren gebildet
+ Ergebnisse sind nachvollziehbar
und detailliert beschrieben
+ Kategorien wurden durch mehrere
Studien belegt
Diskussion
In allen Studien wird „Unterbruch im
Msein“ beschrieben, obwohl nicht
primäres Forschungsziel
Homogenität Studien/Ergebnisse
aller Studien
Limitation: nur engl. Autoren
berücksichtigt, nur hoher
Entwicklungsstand der Länder
eingeschl.,
Conclusion: Im Fokus des G steht
der Gesundheitszustand und nicht
Mrolle. G sind nicht hilfreich in der
Bewältigung von K und M. Plattform
bieten für Austausch. G sind gut
positioniert, um M zu unterstützen
im Erhalt und Anpassung der Mrolle.
„disrupted mothering“ (dm) definiert:
M nimmt wahr, dass ihre M
unterbrochen/ beeinträchtigt wird.
Dies führt zu Stress/Schuldgefühlen
mit mögl. Langzeit Auswirkungen.
K führt zu dm.
Anwendbarkeit
+gute Anwendbarkeit aufgrund detaillierte
Beschreibung der eingeschlossenen Studien
und deren Population
+ Mögl. Interessenkonflikte werden von den
Autoren verneint.
+ es gab keine finanzielle Unterstützung
- nicht alle Themen abgedeckt, z.B. soziale
Unterstützung, Balance, Verpassen
Synopses of single Studies (Evidence based Journals) Abkürzungen: G= Gesundheitspersonal, K=Krankheit, Ki=Kinder*, M=Mutter*, NW=Nebenwirkungen,
Larissa Sauder
48
Referenz: Power, T., Jackson, D., Weaver, R. & Carter B. (2011). Social support for mothers in illness: A mulifacetes
phenomenon. Contemporary Nurse, 40(1), 27-40.
Für kranke F kann es
schwierig sein ihre
Aufgaben als M
wahrzunehmen.
Die Erfüllung der
Bedürfnisse der K und der
M stellt die F
möglicherweise vor eine
überwältigende
Herausforderung.
Beschreibung der
Erfahrung/Erleben von
chronisch kranken Mütter
und welche soziale
Unterstützung sie erhalten
Welche soziale
Unterstützung erhalten
kranke Frauen mit kleinen
Kindern? Wie schätzen
sie diese Unterstützung
ein und wie beeinflusst die
Unterstützung ihre
Sichtweise auf die
Mutterschaft?
Methode
Qualitatives Design
Storytelling Methode
Halbstrukturierte
Interviews, Dauer <1
Stunde, Tonaufnahme,
Emails über mehrere
Wochen
Transkiption aller Daten
Codierung
Kategorisierung nach
Miles und Hubermann
1994
Weisse,
englischsprechende
Mütter (n=10), 9
Australierinnen, 1
Amerikanerin,
Altersrange: 25-59 Jahre,
4 mit physicher
Erkrankungen, 3
psychischen
Erkrankungen, 3 mit
beidem,
6 verheiratet, 2
geschieden, 1 verlobt, 1
single
21 Kinder, Altersrange: 334 Jahre
Ergebnisse
Zwischen unterstützt werden und
ausgeliefert seinDie Auswahl für Su ist
eingeschränkt. Meistens Fam.
Fremdplatzierung/Erziehung macht M
frustiert und kraftlos.Su anzunehmen
macht Konflikten, Frustration, Gefühl von
Verzicht/Sorge
Hilfreiche Unterstützung mit negative
Folgen
Su schätzen, fühlten sich die M bedroht,
Übernahme der Mrolle, schmälerte sich
die M-Ki-Verbindung. Abwesenheit der M
hatte eine anhaltende negvWirkung auf
Beziehung zwischen der M und Ki.
Hilfreiche Unterstützung mit
stärkenden Folgen Ermöglicht Su ein
gemeinsames Weiterleben, ergaben sich
keine neg Folgen.
Su kann pos Folgen: Stärkung,
bestätigende Wirkung auf Identität M
haben. Pos FB von den Unterstützenden
kann die Sorge, dass ihre Ki unter der
Abwesenheit/Krankheit der M leiden,
senken.Die Basis/Grund/Haltung ist
essentiell, wie die Auswirkungen auf die
Identität der Mutter sind. Pflicht (Fam->
negative Folgen Freundschaft -> positive
Folgen Selbsthilfegruppen, bei
fehlenden/mangelnden soz Umfeld sehr
hilfreich erlebt!
M halten ihre Funktion als unersetzbar
und fühlen sich schlecht, wenn sie ihre
Aufgaben/Rolle nicht wahrnehmen
können. Hilfe einzufordern/anzunehmen
gestaltet sich teilweise als
Herausforderung. Su im Leben von k M
unumgänglich
Diskussion
Es werden die einzelnen
Personen, welche
unterstützen beleuchtet:
Partner/Ehemänner:
Sofortige Hilfe, mit der
Gefahr der überlastung
Eigene Mutter: starke
Hilfe,
M äussern ihre
gewünschte Su zu wenig,
sodass eine
Unstimmigkeit zwischen
gewünschter und
erhalterner Su passiert.
In Praxis werden
Famsysteme zuwenig
evaluiert, alternative R
nicht genutzt.
G kann M Hilfestellung
bieten Die Fam ist eine
willige R ist aber oftmals
schlecht informiert oder
strukturiert. G ist in einer
besonders guten Position,
um diese F zu stärken, R
zu fördern
Limitationen der Studie:
Es ist eine äusserst
homogene Gruppe.
Es gibt einen deutlichen
Unterschied zwischen
den R bei psychischen
und physichen
Erkrankungen, welche
nicht näher untersucht
wurde.
Die Ausübung der M hat einen direkten
Einfluss auf den Selbstwert der F. K
erschwert die erfolgreiche/gewohnte
Ausübung dieser Funktion, was zu einen
verminderten Selbstwert, Schuldgefühlen
und Stress führen kann.
Glaubwürdigkeit
-/+ Peer-Debriefing
nur im
Forschungsteam
- keine Membercheck
beschrieben
Übertragbarkeit
+ dichte Beschreibung der Teilnehmerinnen
+ gute/nachvollziehbare Zitation
-kleines homogenes Sample
Zuverlässigkeit
+ transparenter
Forschungsprozess
+Zitation refenziert
Bestätigbarkeit
+ Keinen
Interessenskonflikt,
keine finanzielle
Unterstützung
+ Vorlegung
Ethikkommission
Vertauenswürdigkeit
Die Studie wirkt sehr vertrauungswürdig aufgrund der hohen Transparenz und detalierten Beschreibung des
Forschungsprozesses. Die Ergebnisse zielen auf die Forschungsfrage ab und beschreiben die Realität der
Betroffenen gut ab.
Single studies (Original article) Abkürzungen: F=Frauen, Fam=Familie, FB= Rückmeldung, G=Gesundheitspersonal, K=Krankheit, Ki=Kinder*,
M=Mutter*, R= Ressource, RA= Rheumatoide Arthritis, SS=Schwangerschaft, Su= Soziale Unterstützung
Larissa Sauder
49
Referenz: Wadd, K.M., Bennett, P.N. & Grant, J. (2014). Mothers requiring dialysis: parenting and end-stage kidney
disease. Journal of renal care, 40(2), 140-146.
Einleitung/Zweck/Ziel Methode
Ergebnisse
Diskussion
M mit HD müssen
Qualitatives Design
Alles passend machen
Vergleichbar mit
vielen Bedürfnissen
Halbstrukturierte
Die Therapie nimmt sehr viel Zeit in
anderen Chron K, HD
gerecht werden. Die
Interviews
Anspruch und dominiert den Zeitplan.
M funktionieren auf
Studie untersucht und
Das ständige drum herum geplanne
einem tiefen
beschreibt, wie HDpat
Via Tel wegen
ist anstrengend.
physischen Level (Mehr
ihr M sein erleben.
Distanzen
HD und M sein ist sehr erschöpfend
Schlaf, mehr
4 M wurden interviewt
Tonbandaufnahmen
Herausforderungen innerhalb der
Depression, Fatigue)
4 Kernthemen
Dauer: 60-90 Min
Familie
herausgearbeitet: alles
HD beeinflusst alltägliches, M sind
Aufgrund der NW leidet
passend machen,
Transkript Analyse
erschöpft nach HD und schaffen es
oft die Quanti- und
Herausforderungen in
nach Braun&Clarke
kaum ihre Mrolle zu erfüllen, z.B. wie
Qualität der Tätigkeiten
der Familie,
2006
vorbereiten und gemeinsames Essen,
mit Ki
Verbindung verlieren,
viele Abwesenheit der M bei wichtigen Trotz Selfcare HD,
nach Normalität
Australische M (n=4),
Momenten/Situationen
leiden die M an einer
streben.
Altersrange: nicht
Verbindung verlieren
sozialen Diskonnetion
bekannt, 2 verheiratet Die Anbindung an Therapie reduziert
mit arbeitendem
sozialer Bewegungsradius, Gefühl von Es fehlen
Ehemann, 2
Abgeschnitten sein, wenig Spontanität altersgerechte
alleinerziehend, 3
mgl.
Aufklärungstools für Ki
Heimhd, 1
M ringen nicht nur mit K und deren
Nachtdialyse, 1 im
Auswirkungen, sondern auch mit den
Limitation:
Spital (MontagKonsquenzen des Abgeschnitten
Kein Fokus auf das
Mittwoch-Freitag
seins von der Familie und Freunden
Erleben der Ki, kleine
Morgen),
M verlieren den Anschluss z.B. in der
Stichprobe, keine
Anzahl Ki nicht
Schule
mixmethode
bekannt, Altersrange:
Nach Normalität streben
0-18 Jahre, 1 Ki
M möchten normal behandelt werden
behindert
trotz K und Einschränkungen, z.B.
Schule
Glaubwürdigkeit
+ Member Check
durchgeführt
+ Austausch mit anderen
Forschern beschrieben
+ Referentielle Adäquatheit:
Untermauerung der
Interpretationen mit anderen
Studien
Übertragbarkeit
+ dichte Beschreibung der
Teilnehmerinnen
+passende Zitation
- kleines homogenes Sample
Zuverlässigkeit
+ Transparenter
Forschungsprozess
+ Zitation ist
referenziert
+Triangulation
durch Member
Check und
Austausch
Experten
Bestätigbarkeit
+ Führung eines
Reflective
Journal
+ Vorstellung bei
Ethikkommission
Vertauenswürdigkeit
Trotz der kleinen Stichprobe zeigt diese Studie eine sehr gute Qualität. Die Ergebnisse sind sehr zugänglich und
offen beschrieben und zeigen die Realität der Betroffenen.
Hirarchie Pyramide nach Di Censo et al.
Single studies (Original article) Abkürzungen: HD=Hämodialyse, K=Krankheit, Ki= Kinder*, M=Mutter*
Larissa Sauder
50
151126 Literartusuche „Erleben von chronisch kranken Müttern“
CINAHL Suche
Chronische Krankheit
Mutter
Mutterschaft
Mutter Rolle
Freewords
Chronic illness
Chronic disease
Chronic condition
Mother
Mothers
Motherhood
Mother role
Maternal role
Elternschaft
Parenting
Keywords
"Chronic Disease"
(MH"Chronic Disease")
"Single Parent"
(MH"Single parent")
"motherhood” (MH"Motherhood")
"Mother-Child Relation"
(MH"Mother-Child Relation")
"maternal role"
(MH"maternal role")
"Parenting"
(MH"Parenting")
"Parents, Disable"
(MH"Parents, Disabled")
disrupted mothering
CINAHL
151126_Search_C_1
(MH "Parents, Disabled")
(MH "Chronic Disease")
(MH "Parents, Disabled") AND (MH "Chronic Disease")
(MH "Motherhood")
(MH "Chronic Disease") AND (MH "Motherhood")
394
44343
4>2>0
1622
5>3>2
151126_Search_C_3
(MH "Single parent")
(MH "Chronic Disease") AND (MH "Single parent")
151126_Search_C_4
(MH"maternal role")
(MH"maternal role") AND (MH "Chronic Disease")
151126_Search_C_5
151201_Search_C_7
(MH"Parenting")
(MH"Parenting") AND (MH "Chronic Disease")
(MH"Mother-Child Relation")
(MH"Mother-Child Relation") AND (MH "Chronic
Disease")
(MH"Mother-Child Relation") AND (MH "Parents,
Disabled")
(MH "Chronic Disease") AND "disrupted mothering"
1393
23>0
no sick mothers
979
11>0
care for sick kids
11000
103<12<6
1970
14<0
no sick mothers
4>0
Behinderung
0
Pubmed Suche
Mutter
Freewords
Mother
Mutterschaft
motherhood
Chronic disease
151127_Search_P_1
("Mother-Child Relation"[Mesh])
("Mother-Child Relations"[Mesh]) AND "Chronic
Disease"[Mesh]
("Chronic Disease"[Mesh]) AND "disrupted mothering"
Similar article „Experiences of mothers living with
inflammatory arthritis.“
Similar article „Experiences of mothers living with
inflammatory arthritis.“, Limits: Language englisch
("Chronic Disease") AND ("motherhood")
151126_Search_C_2
151127_Search_C_6
151201_Search_P_2
151201_Search_P_3
151202_Search_P_4
PsychInfo Suche
Mutter/Mütter
Keyword
Mother
Mutterschaft
Motherhood
Larissa Sauder
Keywords
"Mother-Child
Relation"[Mesh]
"Chronic
Disease"[Mesh]
17916
225687
151<14<3
3<1<1
196
163<19<12
32<10<6
Map Terms/Subject Headings
("mothers"[Mesh])
51
Mutter Rolle
PsychInfo
151128_Search_I_1
151130_Search_I_2
151201_Search_I_3
151202_Search_I_4
Freesearch
151201
Via Literaturverzeichnis
Maternal role
Chronic Illness
Chronic Disease
("mothers"[Mesh])
("Parental role"[Mesh])
("mothers"[Mesh]) AND ("Chronic Illness"[Mesh])
("mothers"[Mesh]) AND ("Chronic Illness"[Mesh]), Limits:
english language
("Parental role"[Mesh]) AND ("Chronic Illness"[Mesh])
("Parental role"[Mesh]) AND ("Chronic Illness"[Mesh]), Limits:
english language
("Chronic Illness"[Mesh]) AND "disrupted mothering"
("Chronic Illness"[Mesh]) AND "motherhood"
Chronically ill mothers experiencing pain:
relational coping strategies used while parenting
young children.
White CP; Mendoza J; White MB; Bond C;
151201
Mothering disrupted by illness: A narrative
synthesis of qualitative research.
Vallido, Tamara, Wilkes, Lesley, Carter, Bernie &
Jackson, Debra. (2010).
151201
151201
151201
Experiences of mothers living with inflammatory
arthritis.
Backman CL; Smith Ldel F; Smith S; Montie PL;
Suto M (2007)
Social Support For Mothers In Illness: A
Multifaceted Phenomenon
Tamara Power, Debra Jackson+, Roslyn Weaver
And Bernie Carter (2011)
151204
Larissa Sauder
(“Parental role”[Mesh])
35001
22921
4828
168
158<28<(12)10
22
21<2<1
3<1
11<6<4
Does arthritis influence
perceived ability to fulfill a
parenting role?: perceptions
of mothers, fathers and
grandparents.
Barlow JH, Cullen LA, Foster
NE, Harrison K, Wade M.
Transforming the exhausting
to energizing process of
being a good parent in the
face of cancer. Elmberger E.,
Bolund C. & Lu ̈tze ́n K.
(2000)
Experience of dealing with
moral responsibility as a
mother with cancer
Elmberger E., Bolund C. &
Lu ̈tze ́n K. (2005)
Being a mother with cancer:
Achieving a sense of balance
in the transition process.
Elmberger E., Bolund C.,
Magnusson A., Lu ̈tze ́n K. &
Andershed B. (2008)
Mothers with disabilities: in
their own voice.
Farber RS (2000)
When Mom's sick: Changes
in a mother's role and in the
family after her diagnosis of
cancer
Fitch, Margaret I., Bunston,
Terry, Elliot, Mary (1999)
52
Abkürzungen
C= CINHAL
P=Pubmed
I= PsychInfo
E=Eingeschlossen
A=Ausgeschlossen
Ph = Phänomen
Po = Population
ne = nicht erleben, Studie beschreibt nicht das Phänomen erleben
von chronisch kranken Mütter
kk = kranke Kinder, Studie beinhaltet Population kranker Kinder
NV = Volltext nicht verfügbar
151126_Search_C_1
Search Results: 1 - 4 of 4
Result list
1.
Silent, invisible and unacknowledged: experiences of young caregivers of single
parents diagnosed with multiple sclerosis.
2.
Furthering the understanding of parent-child relationships: a nursing scholarship review
series. Part 4: parent-child relationships at risk.
3.
Supporting parents with chronic illnesses.
4.
Young carers in Germany: to live on as normal as possible -- a grounded theory study.
Bemerkung
A:Po, Sichtweise der
Mütter?
A: Ph, Erleben fehlt
E
E
Eingeschlossene Titel->Abstracts 4<2<0
1/3 Supporting parents with chronic illnesses.
Janotha, Brenda L. 2011 nursing
Chronic illness can be defined as a permanently altered state of health caused by a
progressive pathological process. According to the CDC, chronic illness affects nearly half
of all Americans, roughly 133 million people. Besides coping with their health problem,
chronically ill adults who have children face the additional challenge of parenting with
illness. A good deal of research has been done about how a child's illness affects the
family, but much less information is available about parents suffering with chronic illness.
This article explores ways nurses can help adult patients and their children cope with a
parent's chronic illness.
2/4Young carers in Germany: to live on as normal as possible – a grounded theory study
Sabine Metzing-Blau* and Wilfried Schnepp 2008
Background: In contrast to a growing body of research on the situation of adult family care
givers, in Germany hardly anything is known about the situation of children and teenagers
who are involved in the care of their relatives. Methods: In this Grounded Theory study 81
semi structured interviews have been carried out with children and their parents in 34
families, in which one member is chronically ill. 41 children and 41 parents participated and
the sample is heterogeneous and diverse. Results: On the one hand, there is the
phenomenon 'keeping the family together", which describes how families themselves cope
with the chronic illness and also, which tasks to what extent are being shifted and
redistributed within the family in order to manage daily life. Influencing factors, the
children's motives as well as the impact on the children also belong to this phenomenon.
The second phenomenon 'to live a normal course of life' describes concrete wishes and
expectations of support for the family to manage the hindered daily life. These two
phenomena linked together constitute the 'model of experience and construction of familial
care, in which children take over an active role'. Conclusion: It will be discussed, that the
more families are in dire need of support, the more their distress becomes invisible,
furthermore, that management of chronic illness is a process, in which the entire family is
involved, and thus needs to be considered, and finally, that young carer's relief is not
possible without relief of their parents.
A: Fachartikel keine
Primärliteratur
A:Po
children and
teenagers who are i
nvolved in the care
of their relatives
151126_Search_C_2
Search Results: 1-5 of 5
1.
Maternal morbidity: Neglected dimension of safe motherhood in the developing world.
Bermerkung
2.
A Mother's Work: Two Levels of Feminist Analysis of Family-Centered Care.
3.
'When you have children, you're obliged to live'.
A: ?
Larissa Sauder
A: kein Fokus auf
das Sterben von
Mütter
E
53
4.
Motherhood in the context of maternal HIV infection.
5. Review: mothers with HIV infection worked hard to protect their children and preserve a
positive maternal identity.
Eingeschlossene Titel->Abstracts 5<3<2
No abstract
Review: mothers with HIV infection worked hard to protect their children and preserve a
positive maternal identity.
No abstract!
CONCLUSIONS Mothers with HIV infection negotiated the demands of their illness and
the role of mother. Although motherhood provided strength and self esteem, they had to
work to prove themselves to be good mothers because of the stigma of HIV
Motherhood in the context of maternal HIV infection.
,
Margarete Sandelowski Julie Barroso 2003
Metasummary and metasynthesis techniques were used to integrate findings pertaining to
motherhood in 56 reports of qualitative studies conducted with HIV-positive women.
Motherhood in the context of maternal HIV infection entailed work directed toward the
illness itself and the social consequences of having HIV infection in the service of two
primary goals: the protection of children from HIV infection and HIV-related stigma and the
preservation of a positive maternal identity. Motherhood both intensified and mitigated the
negative physical and social effects of HIV infection. HIV-positive mothers engaged in a
distinctive kind of maternal practice—virtual motherhood—to resist forces that disrupted
their relationships with and ability to care for their children, as well as their identities as
mothers. © 2003 Wiley-Liss, Inc. Res Nurs Health 26:470–482, 2003
When you have children, you’re obliged to live’
Sarah Wilson Sociology, University of Edinburgh 2007
Recent work on biographical disruption has emphasised the critical importance of timing
and context to the understanding of the effects of illness on identity. This paper takes a
different approach by examining the inter-relationship between illness and key sources of
identity, in this instance HIV infection and motherhood. It is argued that, viewed in this
light, biographical disruption remains a powerful analytic framework with which to explore
the intense threat which may be posed to key identities by chronic, potentially fatal
illnesses, and the fundamental re-working of such identities occasioned by such threats.
With reference to the empirical study on which this paper draws, it is shown that the twelve
respondents’ emphasis on their need to survive and to protect their children, represented a
fundamental re-formulation of their identities as mothers and, therefore, a type of
biographical disruption while paradoxically also containing elements of biographical
reinforcement. It is further argued that the incorporation of such key identities into the
analysis problematises work that suggests that biographical disruption is less relevant to
those who have experienced difficult lives, while also highlighting the need to take greater
account of gender and caring responsibilities in further work in this field. Keywords:
motherhood, identity, biographical disruption, HIV infection
151126_Search_C_3 23<0
Results: 1-23 of 23
Result list
1.
Silent, invisible and unacknowledged: experiences of young caregivers of single parents
diagnosed with multiple sclerosis.
2.
Socio-Environmental Factors Associated With Lone Parenting Chronically Ill Children.
3.
Employment Hardships and Single Mothers’ Self-Rated Health: Evidence from the Panel
Study of Income Dynamics.
4.
5.
Structural, developmental and functional evaluation of the family of individuals with arterial
hypertension.
6.
The diurnal salivary cortisol pattern of adolescents from families with single, ill and healthy
parents.
7.
The relationship between single-parent status and parenting capacities in mothers of youth
with chronic health conditions: the mediating role of income.
Larissa Sauder
E
E
A?
E
NV
E
Bemerkung
A:Po, Sichtweise der
Mütter?
A:Po, Kranke Kinder
A:Ph
Sozioökonomischer
Fokus
A: Ph, Erleben fehlt
A:Ph, nicht erleben
A: Ph, nicht erleben
A:Ph
Sozioökonomischer
Fokus
54
8.
Problem behavior in children of chronically ill parents: a meta-analysis.
9.
How children with special health care needs affect the employment decisions of lowincome parents.
10.
Meeting children's basic health needs: from patchwork to tapestry.
11.
Prevalence and correlates of mental disorders in Israeli adolescents: results from a
national mental health survey.
12.
The psychosocial adjustment of well siblings of chronically ill children.
13.
Psychiatric briefs.
14.
Single parents of children with chronic illness: an understudied phenomenon.
15.
Is the onset of disabling chronic conditions in later childhood associated with exposure to
social disadvantage in earlier childhood? a prospective cohort study using the ONS
Longitudinal Study for England and Wales.
16.
Cumulative social disadvantage and child health.
17.
Patterns of family adaptation to childhood asthma.
18.
Autonomy development in adolescents with insulin dependent diabetes mellitus.
19. Prevalence and impact of disabling chronic conditions in childhood.
20.The impact of children with chronic illness and/or developmental disabilities on lowincome, single-parent families.
21.Maternal psychological distress: the role of children's health.
22.
Health insurance differentials among minority children with chronic conditions and the role
of federal agencies and private foundations in improving financial access.
23.
Letter to the editor: single parents of children with chronic illness: an understudied
phenomenon...J Pediatr Psychol. 2008 May;33(4):408-21
151126_Search_C_4 11<0
Results: 1-11 of 11
Result list
1.
HOW MOTHERS PERCEIVE THEIR CHILDREN WITH THE NEPHROTIC SYNDROME.
2.
It's Time to Get Moving: What African-American Mothers Say About Physical Activity.
3.
Non-Biological (Fictive Kin and Othermothers): Embracing the Need for a Culturally
Appropriate Pedigree Nomenclature in African-American Families.
4.
EXPERIENCE OF MOTHERS IN THE CARE OF CHILDREN WITH TYPE 1 DIABETES.
5.
Gender Inequities in Health: An Exploratory Qualitative Study of Saudi Women's
Perceptions.
6.
Asthma in adolescents.
7.
Journeying from nirvana with mega-mums and broken hearts: the complex dynamics of
transition from paediatric to adult settings.
8.
A gender perspective on the extent to which mothers and fathers each take responsibility
for care of a child with high and intermediate imperforate anus.
9.
International pediatric nursing. Parenting stress and mothers of young children with
chronic illness: a cross-cultural study.
10.
Larissa Sauder
A:Po
Sichtweise der
Kinder
A:Po
Sichtweise der
Kinder
A:Po
Sichtweise der
Kinder
A:Ph, nicht erleben
A: Po, kranke Kinder
A:?
A: Po, falscher
Fokus
A: Po, falscher
Fokus
A:Ph
Sozioökonomischer
Fokus
Bemerkung
A:Po, Kranke Kinder
A: keine kranken
Mütter
A: keine kranken
Mütter
A:Po, Kranke Kinder
A: keine kranken
Mütter
A: keine kranken
Mütter
A: keine kranken
Mütter
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
55
Pediatric chronic illness: effects on siblings and mothers.
11.
When parenting becomes caregiving: caring for the chronically ill child.
151126_Search_C_5
Results: 1-103 of 103
Result list
1.
“Shifting Family Boundaries” After the Diagnosis of Childhood Cancer in Stepfamilies
2.
A concept analysis of empowerment in mothers of concern in parenting
3.
A Developmental Analysis of the Factorial Validity of the Parent-Report Version of the
Adult Responses to Children's Symptoms in Children Versus Adolescents With Chronic
Pain or Pain-Related Chronic Illness.
4.
An examination of the factor structure of parenting capacity measures in chronic illness
populations
5.
An exploration of the parental and spousal experiences of fathers/husbands in families of
children with chronic illness.
6.
Becoming the Parent of a Child With Life-Threatening Food Allergies
7.
Books.
8.
Child and family psychiatric and psychological factors associated with child physical health
problems: results from the Boricua youth study
9.
Childhood neglect and abuse as predictors of antidepressant response in adult
depression.
10.
Children with Health Issues.
11.
Chronic illness, reproductive health and moral work: women's experiences of epilepsy.
12
Chronic Maternal Depression and Children's Injury Risk.
13
Chronically ill mothers experiencing pain: relational coping strategies used while parenting
young children.
14
Cline and Greene's Parenting Children With Health Issues: Essential Guidance.
15
Clinical consultation. How to parent chronically ill school-aged children and their siblings
16
Coping in parents of children who are chronically ill: strategies for assessment and
intervention.
17
Detached, distraught or discerning? Fathers of adolescents with chronic illness: a review
of the literature
18
Development and validation of the distress thermometer for parents of a chronically ill
child.
19
Differences in parenting needs of fathers of children with chronic conditions related to
family income.
20
Do the parent-child relationship and parenting behaviors differ between families with a
child with and without chronic illness? A meta-analysis
21
Early adversity in chronic depression: clinical correlates and response to
pharmacotherapy.
22
Evidence-based assessment in pediatric psychology: family measures.
23
Experiences of mothers living with inflammatory arthritis.
Larissa Sauder
A:Po, Kranke Kinder
Bemerkung
A:Po, Kranke Kinder
A: keine kranken
Mütter
A: keine kranken
Mütter
A:Po, Kranke Kinder
A: keine kranken
Mütter
A: keine kranken
Mütter
A: keine kranken
Mütter
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Ph, Wochenbett
E
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Väter
A:Po, Kranke Kinder
A:Po, Väter
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
E
56
24
Extreme parenting: parenting your child with a chronic illness.
25
Factor Structure of the Adult Responses to Children's Symptoms: Validation in Children
and Adolescents With Diverse Chronic Pain Conditions.
26
Factors affecting the developmental adjustment of medically complex children in treatment
foster care.
27
Familial Risk in Low-Income Children With Chronic Illness Exposed to Passive Smoke.
28
Family matters. Fathers: the forgotten parent.
29
Fathers' experience of parenting a child with juvenile rheumatoid arthritis.
30
Fathers parenting chronically ill children: concerns and coping strategies.
31
From genes to treatment response: new research into the psychobiology of anorexia
nervosa.
32
33
Growing Up With a Chronic Illness: Social Success, Educational/Vocational Distress.
34
Health care autonomy in children with chronic conditions: implications for self-care and
family management.
35
Impact of social norms and social support on diet, physical activity and sedentary
behaviour of adolescents: a scoping review.
36
Increased prevalence of burnout symptoms in parents of chronically ill children.
37
Introduction to the Special Issue: Coping With Chronic Cancer: Clinical Approaches for
Oncology Social Work Practice.
38
Living with your child's chronic health condition.
39
Management of atopic dermatitis in children: Evaluation of parents' self-efficacy, outcome
expectations, and self-reported task performance using the Child Eczema Management
Questionnaire.
40
Managing chronic illness: parents with a ventilator-dependent child.
41
Maternal attitudes toward discipline: a comparison of children with cancer and nonchronically ill peers.
42
Maternal depression and childhood obesity: A systematic review.(
43
Mommy isn't feeling well today'
44
MOMS: formative evaluation and subsequent intervention for mothers living with
HIV...Making Our Mothers stronger
45
Mothers With Chronic Disease: A Comparison of Parenting in Mothers With Systemic
Sclerosis and Systemic Lupus Erythematosus
46
Mothers with chronic illness: a predicament of social construction
47
Multidimensional Nature of Caregiving: Translating Research Into Everyday Practice.
48
Musings of a mother: life with a chronic medical condition.
49
Nursing's contribution to research about parenting children with complex chronic
conditions: An integrative review, 2002 to 2012.
50
Parent Experiences Raising Young People with Type 1 Diabetes and Celiac Disease.
Larissa Sauder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Väter
A:Po, Väter
A:Po, Väter
A:Ph, kein erleben
A?
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A?
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
E
A: Ph, kein erleben,
Intervention
E
E
A:Po, keine Mütter?
E
A:Po, Kranke Kinder
A:Po, Kranke Kinder
57
51
Parent needs and family support service outcomes in a Canadian sample.
52
Parental Advocacy Styles for Special Education Students During the Transition to
Adulthood.
53
Parental functioning in the context of adolescent chronic pain: a review of previously used
measures.
54
Parental Involvement of Mothers With Chronic Illness and Children’s Academic
Achievement.
55
Parental perceptions of the outcome and meaning of normalization.
56
Parenting a child with a chronic medical condition.
57
Parenting an adolescent with chronic pain: an investigation of how a taxonomy of
adolescent functioning relates to parent distress.
58
Parenting and adjustment in schizophrenia.
59
Parenting and childhood chronicity: making visible the invisible work
60
Parenting Characteristics of Female Caregivers of Children Affected by Chronic Endocrine
Conditions: A Comparison Between Disorders of Sex Development and Type 1 Diabetes
Mellitus.
61
Parenting children requiring complex care at home: re-visiting normalisation and stigma
62
Parenting children with hypoplastic left heart syndrome: Finding a balance.
63
Parenting Experience of Parents with Chronically Ill Children.
64
Parenting foster children with chronic illness and complex medical needs.
65
Parenting interventions for childhood chronic illness: A review and recommendations for
intervention design and delivery.
66
Parenting stress among caregivers of children with chronic illness: a systematic review.
67
Parenting the child with a chronic condition: an emotional experience.
68
Parenting With Chronic Cancer: A Relational Perspective.
69
Parenting young children with congenital heart disease.
70
Parenting, autonomy and self-care of adolescents with Type 1 diabetes.
71
Pity? What chronically ill children really need.
72
Psychometric assessment of scales for a Model of Goal Directed Vegetable Parenting
Practices
73
Raising a child with special needs.
74
Returning to work after parenting a child with the most curable chronic disease.
75
Risk-taking behaviour in adolescence: a literature review.
76
SAHM -- 2014 Annual Meeting: Abstracts of Research Poster Presentations.
77
Siblings of children with chronic physical and cognitive disabilities.
78
Single parents of children with chronic illness: an understudied phenomenon.
79
State of the science: family research in pediatric oncology nursing.
80
Larissa Sauder
A:Po, keine kranken
Mütter
A: Ph, Transition
A:Po, Kranke Kinder
E
E
A:Po, Kranke Kinder
A:Po, Kranke Kinder
E
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
E
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Ph, kein erleben
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:?
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
58
Stress in mothers of chronically ill children: a cross cultural study.
81
Supporting development of children with chronic conditions: from compliance toward
shared management.
82
Supporting parents with chronic illnesses.
83
Sustained effects of incredible years as a preventive intervention in preschool children with
conduct problems.
84
The Broken Thread of Health Promotion and Disease Prevention for Women During the
Postpartum Period.
85
The Coconstruction of Couples’ Roles in Parenting Children With a Chronic Health
Condition.
86
The development of an instrument to measure the effects of a parent's chronic illness on
parenting tasks.
87
The experience of parenting children with chronic health conditions: a new reality.
88
The Family Management Style Framework for Families of Children with Obesity.
89
The needs of fathers parenting children with chronic conditions.
90
The needs of middle class fathers parenting children with chronic conditions in two-parent
families.
91
The Psychosocial Impact of Life- Threatening Childhood Food Allergies.
92
The relationship between single-parent status and parenting capacities in mothers of youth
with chronic health conditions: the mediating role of income.
93
The Relationship of Father Parenting Capacity Variables to Perceived Uncertainty in Youth
With a Chronic Illness.
94
The relationship of parent self-focused negative attributions to ratings of parental
overprotection, perceived child vulnerability, and parenting stress.
95
The role of parent health literacy among urban children with persistent asthma.
96
The social and political conditions that shape special-needs parenting.
97
Top Parent Blogs for Raising Children with Type 1 Diabetes.
98
Toward conceptual clarity in a critical parenting construct: parental monitoring in youth with
chronic illness.
99
Transition planning for youth with chronic conditions: an interdisciplinary process.(
100
Transitions in midlife adults with long-term illness.
101
Translational Research: The Multidimensional Scope of Pediatric Nursing.
102
'Uncharted waters': the experience of parents of young people with mental health
problems
103
When parenting becomes caregiving: caring for the chronically ill child.
Eingeschlossene Titel-> Abstracts_103<12<6
1/86
The development of an instrument to measure the effects of a parent's chronic illness on
parenting tasks.(includes abstract) Nehring WM; Cohen FL; Issues in Comprehensive
Pediatric Nursing, 1995; 18(2): 111-123. (13p) (Journal Article)
An instrument was developed to assess the impact of chronic illness on the performance
of parenting tasks (e.g., lifting, feeding, transporting, etc.). Little research on the affect of
Larissa Sauder
A:Po, Kranke Kinder
E
A:Po, Kranke Kinder
A:Po, Wochenbett
A:Po, Kranke Kinder
E
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Väter
A:Po, Väter
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Väter
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A: Ph, kein erleben
Sozio-politischer
Fokus
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A: keine Mütter?
A:Po, Kranke Kinder
A:Po, Kranke Kinder
A:Po, Kranke Kinder
Bemerkung
A: nicht erleben
Interverntionsstudie
59
illness in general on the performance of parenting tasks is in the literature. Mothers with
narcolepsy (n = 20) were used as the sample for this pilot study along with a comparison
of mothers without a chronic illness (n = 20). Mothers were matched by the age and sex of
the oldest child. The age groups of childhood and adolescence from the Parenting Tasks
Index (PTI) were used in this study. Good reliability and validity were found in the use of
this instrument. Over 50% of the mothers with narcolepsy indicated many parenting tasks
(e.g., assigning the child chores, disciplining, and performing household chores) that
posed moderate to severe difficulty for them. Pediatric nurses will find this instrument
useful in planning individualized interventions related to identified difficult parenting tasks
and in furthering research in this area.
2/82
Supporting parents with chronic illnesses.(includes abstract) Janotha BL; Nursing,
Jan2011; 41(1): 59-62. (4p) (Journal Article - pictorial, tables/charts)
Abstract: Chronic illness can be defined as a permanently altered state of health caused
by a progressive pathological process. According to the CDC, chronic illness affects nearly
half of all Americans, roughly 133 million people. Besides coping with their health problem,
chronically ill adults who have children face the additional challenge of parenting with
illness. A good deal of research has been done about how a child's illness affects the
family, but much less information is available about parents suffering with chronic illness.
This article explores ways nurses can help adult patients and their children cope with a
parent's chronic illness.
3/68
Parenting With Chronic Cancer: A Relational Perspective. (includes abstract) Golby,
Barbara J.; Social Work in Health Care, Jan2014; 53(1): 48-58. (11p) (Journal Article)
Abstract: Living with chronic cancer poses unique challenges for parents caring for minor
children. The demands of the illness such as pain, fatigue, and loss of mobility, as well as
caregiver responsibilities, can conflict with the patient's and partner's idea of what it means
to parent. This article examines the ways in which chronic cancer impacts the parental role
using Attachment as a theoretical framework. Case examples and implications for clinical
practice in both health care and mental health settings are provided.
4/58
Parenting and adjustment in schizophrenia.(includes abstract) Caton CLM; Cournos F;
Dominguez B; Psychiatric Services, Feb1999; 50(2): 239-243. (5p) (Journal Article research, tables/charts
Abstract: OBJECTIVE: Patients with schizophrenia who became parents and those who
remained childless were compared on premorbid characteristics and current clinical and
social adjustment. METHODS: Subjects were 400 men and women with a DSM-III-R
diagnosis of chronic schizophrenia based on the Structured Clinical Interview for DSM-IIIR (SCID). Assessments measured concurrent substance abuse and antisocial behavior,
positive and negative symptoms using the Positive and Negative Syndrome Scale,
functional status using the Global Assessment of Functioning scale, family support, and
treatment compliance. A total of 158 patients were parents (47 men and 111 women), and
242 were childless (153 men and 89 women). RESULTS: Compared with childless
subjects, parents were more likely to have had better premorbid social adjustment, to have
ever been married or involved in a conjugal relationship, and to have become ill at a later
age. More than two-thirds of parents entered parenthood before the onset of
schizophrenia. More women than men were parents, and parents were more likely to be
members of ethnic minority groups. No differences were found in current clinical and social
adjustment of parents and childless subjects. CONCLUSIONS: Parenthood was
associated with better premorbid social adjustment, but it conferred no advantage in the
long-term course of schizophrenia. Patients who experience a later onset of schizophrenia
or have better premorbid social skills may be more likely to undertake marriage and
parenthood, but they will then also be more likely to need special support for the parenting
role once the illness begins and takes its typical course.
5/55
Parental perceptions of the outcome and meaning of normalization.(includes abstract)
Knafl KA; Darney BG; Gallo AM; Angst DB; Research in Nursing & Health, Apr2010; 33(2):
87-98. (12p) (Journal Article - research)
Abstract: The purpose of this secondary analysis was to identify the meaning of
normalization for parents of a child with a chronic genetic condition. The sample was
comprised of 28 families (48 parents), selected to reflect two groups: Normalization
Present (NP) and Normalization Absent (NA). Constant comparison analysis was used to
identify themes characterizing parents' perceptions of the meaning of normalization. The
meanings parents attributed to normalization reflected their evaluation of condition
management, parenting role, and condition impact, with parents in the NP and NA groups
demonstrating distinct patterns of meaning. These meaning patterns are discussed as an
outcome of normalization. Providers can play a pivotal role in helping families achieve
normalization by providing guidance on how to balance condition management with
Larissa Sauder
E
V
E
V
E
V
RCT
A:Po, kranke
Kinder
60
normal family life
6/54
Parental Involvement of Mothers With Chronic Illness and Children’s Academic
Achievement.(includes abstract) Chen, Yung-Chi; Fish, Marian C.; Journal of Family
Issues, May2013; 34(5): 583-606. (24p) (Journal Article - research, tables/charts)
This study examined how maternal chronic illnesses may affect children’s academic
achievement through parental involvement. A total of 189 mothers diagnosed with chronic
illnesses, such as multiple sclerosis, diabetes, cancer, HIV/AIDS, chronic pain, asthma,
myelodysplasic syndrome, and fibromyalgia, and with a child in middle school or high
school (age 10-18 years) completed questionnaires assessing the demands of illness on
family functioning, parental involvement, and the child’s academic functioning. The results
suggested that the majority of children of mothers with chronic illness were able to function
adequately in terms of academic achievement. However, children’s academic functioning
might be at risk when family functioning was more disrupted as the result of maternal
illness. Children’s grades were negatively related to levels of demands of illness on family
functioning. Levels of illness demands were negatively related to parental self-efficacy.
Moreover, parental self-efficacy attenuated the effects of disruption in normal family
functioning on children’s academic achievement.
7/48
Musings of a mother: life with a chronic medical condition. (includes abstract) Woolf L;
NASN Newsletter, 2003 Jan; 18(1): 29-29. (1p) (Journal Article)
8/46
Mothers with chronic illness: a predicament of social construction.(includes abstract)
Thorne SE; Health Care for Women International, Jan1990; 11(2): 209-221. (13p) (Journal
Article - research)
Abstract: In the context of a larger qualitative study, a database including extensive
interviews with a subset of sixteen chronically ill mothers was obtained. Secondary
analysis revealed that the women's concerns about themselves and their children included
issues of performance, availability, dependency, and socialization. Further, these women
reported that the health care system seemed incapable of recognizing or accounting for
the profound interrelationship between their mothering and their illness. Analysis of these
findings in terms of the conflicting social obligations inherent in the roles of 'mother' and of
'chronically ill person' provides a means by which to understand the women's impressions
that it was a contradiction in terms to be both an effective mother and a good patient.
9/45
Mothers With Chronic Disease: A Comparison of Parenting in Mothers With Systemic
Sclerosis and Systemic Lupus Erythematosus.(includes abstract) Poole, Janet L.; Hare, K.
Sena; Turner-Montez, Sabrina; Mendelson, Cindy; Skipper, Betty; OTJR: Occupation,
Participation & Health, Winter2014; 34(1): 12-19. (8p) (Journal Article - research,
tables/charts)
Abstract: This study compared parenting ability in mothers with systemic sclerosis (SSc)
and systemic lupus erythematosus (SLE), two chronic, autoimmune, connective tissue
diseases that primarily affect women. Seventy-four mothers with SSc and 68 mothers with
SLE completed self- report questionnaires on demographic characteristics, pain, fatigue,
occupational performance, and parenting. Results showed that mothers with SSc were
slightly older, were more educated, and had decreased occupational performance.
Mothers with SLE had more pain and fatigue. There were no significant differences
between mothers with SSc and SLE who had children 5 years of age and younger.
However, there were significant differences between the mothers with SSc and SLE who
had children aged 6 to 18 years on four items on the Parenting Disability Index: playing
games with child, getting up with child during the night, keeping child out of unsafe
situations, and helping child solve personal/social problems. These differences may be
due to differences in the levels of pain, fatigue, and occupational performance, possibly
stemming from differences in disease manifestations.
10/43
'Mommy isn't feeling well today'.(includes abstract) Mahoney S; Parents, Sep2010; 85(9):
96-102. (5p) (Journal Article - pictorial)
11/23
Experiences of mothers living with inflammatory arthritis. (includes abstract) Backman CL;
Smith Ldel F; Smith S; Montie PL; Suto M; Arthritis & Rheumatism: Arthritis Care &
Research, Apr2007; 57(3): 381-388. (8p) (Journal Article)
OBJECTIVE:To describe the impact of chronic, inflammatory arthritis on parenting and to
develop a conceptual framework for subsequent study of mothering.
METHODS: A qualitative, grounded theory design guided data collection and analysis. Indepth interviews were conducted with a purposive sample of 12 women with either
rheumatoid arthritis, ankylosing spondylitis, juvenile idiopathic arthritis, or systemic lupus
erythematosus who were mothers of at least 1 child living at home. Transcripts were
analyzed using a systematic approach of coding and forming concepts and key categories
Larissa Sauder
A:Ph, Fokus auf
Auswirkungen auf
die Kinder nicht
Mütter
A: Fachartikel
E
V
A: kein Erleben
Vergleichsstudie
A:kein Text?!?
Fachartikel
E
V
61
to construct an explanatory framework. Peer checking and member checking enhanced
analytical rigor.
RESULTS: Analysis of participants' experiences resulted in 4 interrelated categories
describing the impact of arthritis on their role as mothers: participation in mothering tasks,
best described as "sometimes I can, sometimes I can't"; different types and levels of
support from others; the influence of the mother's arthritis on the family; and the challenge
of balancing energy and fatigue. Individuals' arthritis story, life stage, their children's
developmental stage, and daily routine described the context in which mothers
experienced elements of each of the 4 main categories.
CONCLUSION: Inflammatory arthritis has a dramatic impact on the experience
of motherhood, with both positive and negative influences. The perspectives shared by
study participants may inform practice regarding problem identification and adaptive
strategies, and the explanatory model generated from the data proposes hypotheses for
further study.
12/13
Chronically ill mothers experiencing pain: relational coping strategies used while parenting
young children.(includes abstract) White CP; Mendoza J; White MB; Bond C; Chronic
Illness, Mar2009; 5(1): 33-45. (13p) (Journal Article - research, tables/charts)
There has been little research on women who are parenting while they experience pain
and none of this research has focused on mothers with young children. The purpose of
this study was to consider relational coping strategies generated by mothers that they
used when parenting young children and experiencing pain.
METHODS: 262 mothers participated in this survey research; 171 who have either
multiple sclerosis (MS) or rheumatoid arthritis (RA), and a comparison group of 91well
mothers. Mothers completed questionnaires inquiring about (a) their coping strategies, (b)
levels of pain, fatigue and physical functioning, and (c) if they were currently experiencing
an exacerbation of their chronic illness.
RESULTS: Well mothers reported using more self-care when parenting while experiencing
pain. Mothers with RA were more likely to set boundaries around their behaviour. Women
with MS who were experiencing an exacerbation changed their coping strategies to
include more child activities and encourage more mature child behaviour when compared
to women with RA who were experiencing an exacerbation.
DISCUSSION: From the perspective of relational coping theory, mothers consider their
own pain while simultaneously attending to their responsibilities as a parent. Previous
research has suggested that women may withdraw or reduce their parenting activities
when they are in pain and this study supported the previous research, especially for
women with RA.
151127_Search_C_6
Result: 1-14 of 14
1
2008SNRSabstracts--F-G.
2
A chronically ill child's progression through the separation- individuation process.
3
Attachment in infants at risk: theory, research, and practice.
4
Caring for a chronically ill infant:a paradigm case of maternal rehearsal in the neonatal
intensive care unit.
5
EDITORIAL.
6
Family adaptation to a child's chronic illness.
7
Infant-mother interaction as a predictor of child'schronic health problems.
8
Maternal attachment state of mind moderates the impactof postnatal depression on infant
attachment.
9
Maternal conceptual set development:identifying patterns of maternal response to
chronically ill infant crying.
10
Maternal response to their chronically ill infants'attachment behavior of crying.
11
Mother-infant interactions of medically fragile infants and nonchronically ill premature
infants.
Larissa Sauder
E
V
Bemerkungen
A:?
A:Po, kranke Kinder
A:Po, kranke Kinder
A:Po, kranke Kinder
A:?
A:Po, kranke Kinder
A:Po, kranke Kinder
A:Ph Wochenbett
A:Po, kranke Kinder
A:Po, kranke Kinder
A:Po, kranke Kinder
62
12
Patterns of interaction between mothers and their chronically ill infants.
13
Research evidence.
14
Why publishin the UPNAAI Journal?
1
Mothers with intellectual impairment and their 9-month-old infants.
2
Early communication in dyads with visual impairment
3
Looking without listening: is audition a prerequisite for normal development of visual attention during
infancy?
4
Tactile contact by deaf and hearing mothers during face-to-face interactions with their infants...portions
of this paper were originally presented as part of a symposium entitled 'Communicating with Touch
during Mother-Infant Interactions,' at the Biennial Meetings of the Society for Research in Child
Development, Indianapolis, Indiana, April, 1995; and as a poster at the annual meetings of the Rocky
Mountain Psychological Association, Boulder, Colorado, April 1995
A:Po, kranke Kinder
A:?
A:?
A: Behinderung
A:Behinderung
A:Po, kranke Kinder
A: Behinderung
151127_Search_P_1
Results:1-151 of 151
1
[Definition and psychopathology of chronic hand dermatitis].
2
Attacks on linking: stressors and identity challenges for mothers of daughters with long
lasting anorexia nervosa.
3
Maternal depression and childhood
4
Hospitalization-based treatment for postpartum depressed mothers and their babies:
rationale, principles, and preliminary follow-up data
5
Adolescent response to having an HIV-infected mother. AIDS Care.
6
Development of methods and instruments for external quality assurance in inpatient
parent-child rehabilitation and prevention
7
The duration and timing of maternal depression as a moderator of the relationship
between dependent interpersonal stress, contextual risk and early child dysregulation
8
A developmental decline in the learning-promoting effects of infant-directed speech for
infants of mothers with chronically elevated symptoms of depression.
9
Parenting characteristics of female caregivers of children affected by chronic endocrine
conditions: a comparison between disorders of sex development and type 1 diabetes
mellitus.
10
The relationship of maternal and child illness uncertainty to child depressive
symptomotology: a mediational model.
11
Psychopathology of perpetrators of fabricated or induced illness in children: case series
12
Emotional availability and attachment across generations: variations in patterns
associated with infant health risk status.
13
Chronicity and severity of maternal postpartum depression and infant sleep disorders: a
population-based cohort study in southern Brazil.
14
A prospective longitudinal study of the impact of early postnatal vs. chronic maternal
depressive symptoms on child development.
15
Quality management and practice-oriented research in a clinic-network of mother-/fatherchild rehabilitation centres
16
Larissa Sauder
Bemerkungen
A: Po, keine Mütter
A: Ph, Wochenbett
A: Ph, Wochenbett
A: Po, Fokus Kinder
A:keine Mütter
A: Ph, Wochenbett
A: Po, Fokus Kinder
A:Ph, Wochenbett
A: Ph, Wochenbett
A: Fokus Rehabilitation
A: Ph, Wochenbett
63
Stability and change in levels of depression and personality: a follow-up study of
postpartum depressed mothers that were hospitalized in a mother-infant unit.
17
Psychological stress and family functioning in mothers of children with allergic rhinitis
18
Substance abuse, chronic sorrow, and mothering loss: relapse triggers among female
victims of child abuse
19
Maternal interpersonal trauma and cord blood IgE levels in an inner-city cohort: a lifecourse perspective
20
Depressive symptoms in mothers and children: preschool attachment as a moderator of
risk.
21
The lived experience of mothers of children with chronic feeding and/or swallowing
difficulties.
22
Managing infant feeding practices: the competing needs of bulimic mothers and their
children
23
Quality of life of family caregivers of children with autism: The mother's perspective.
24
Unhealthy maternal lifestyle leads to rapid infant weight gain: prevention of future chronic
diseases.
25
Perfectionism and depression among low-income chronically ill African American and
White adolescents and their maternal parent.
26
Life course theory as a framework to examine becoming a mother of a medically fragile
preterm infant
27
Mothers and children benefit from breastfeeding
28
Chronic maternal depression and children's injury risk.
29
Dealing with chronic pain: giving voice to the experiences of mothers with chronic pain
and their children
30
Parental maltreatment and adulthood cohabiting partnerships: a life-course study of adult
chronic depression
31
Effects of maternal depressive symptoms and infant gender on the interactions between
mothers and their medically at-risk infants
32
Current and past maternal depression, maternal interaction behaviors, and children's
externalizing and internalizing symptoms
33
When you have children, you're obliged to live': motherhood, chronic illness and
biographical disruption
34
Dysthymic disorder and double depression: prediction of 10-year course trajectories and
outcomes.
35
The influence of maternal and child characteristics and paternal support on interactions
of mothers and their medically fragile infants.
36
Limits of professionalism
37
Maternal attachment state of mind moderates the impact of postnatal depression on
infant attachment.
38
The relationship between maternal chronic pain and child adjustment: the role of
parenting as a mediator
39
Developmental trajectories of conduct problems and hyperactivity from ages 2 to 10
40
Associations of paternal involvement in disease management with maternal and family
Larissa Sauder
A:Po,kranke Kinder
A: Po, keine chronisch
kranken Mütter
A:Po,kranke Kinder
A:Ph, Fokus Stillen
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A: keine kranken
Mütter
A: Po, Fokus Kind
E
A: falscher Fokus
A:Ph, Wochenbett
A:Ph, Wochenbett
E
A:?
A:Po,kranke Kinder
A: Fachartikel
A: Ph, Wochenbett
E
A:Po,kranke Kinder
A:Po,kranke Kinder
64
outcomes in families with children with chronic illness
41
Acculturation, parent-child acculturation differential, and chronic disease risk factors in a
Mexican-American population.
42
The disease does not belong to me.
43
A new model for understanding the role of environmental factors in the origins of chronic
illness: a case study of type 1 diabetes mellitus
44
The course of maternal depressive symptoms and maternal sensitivity as predictors of
attachment security at 36 months
45
Factors influencing health promoting activities of mothers caring for ventilator-assisted
children
46
Intergenerational transmission of somatization behaviour: 2. Observations of joint
attention and bids for attention
47
Infants of chronically depressed mothers learn in response to male, but not female,
infant-directed speech.
48
A perinatal psychiatric service audit in New Zealand: patient characteristics and
outcomes.
49
Motherhood in the context of maternal HIV infection
50
The natural course of chronic benign pain in childhood and adolescence: a two-year
population-based follow-up study.
51
An argument against mercy killing: a response to Catlin's "normalization, chronic sorrow
and murder".
52
Normalization, chronic sorrow, and murder: highlighting the case of Carol Carr.
53
Preschool outcomes of children of depressed mothers: role of maternal behavior,
contextual risk, and children's brain activity.
54
Infant-mother interaction as a predictor of child's chronic health problems.
55
Interactions between children with juvenile rheumatoid arthritis and their mothers
56
The ongoing evaluation of the impact of depression on asthma
57
Israeli care of children with special needs.
58
Parenting in a crisis: conceptualising mothers of children with cancer
59
Body, mother, mind: anorexia, femininity and the intrusive object
60
As normal a life as possible: mothers and their daughters with congenital heart disease
61
Caregiver models of self and others, coping, and depression: predictors of depression in
children with chronic pain.
62
Work with parents of children with chronic illness or developmental disability
63
Maternal reports of raising children with chronic illnesses:the prevalence of positive
thinking.
64
Epidemiology of bronchial asthma and chronic rhinitis in schoolchildren of different ethnic
origins from two neighboring towns in Israel
65
Developmental outcomes of infants with bronchopulmonary dysplasia: comparison with
other medically fragile infants.
66
Effects of maternal depression on cognitive development of children over the first 7 years
Larissa Sauder
A: keine chronisch
kranken Mütter
A?
A:Ph, kein Erleben
A: Ph, Wochenbett
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A: Po, Wochenbett
E
A: Fachkomentar,
keine Primärlit
A:Po,Fokus Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
E
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
65
of life.
67
Women's health needs special treatmen
68
Subsyndromal depressive symptoms and major depression in postpartum women.
69
Chronic late-onset schizophrenia-like psychosis
70
Chronicity, severity, and timing of maternal depressive symptoms: relationships with child
outcomes at age 5
71
Social and hygienic characteristics of families of schoolchildren with chronic diseases
72
The experience journal: a computer-based intervention for families facing congenital
heart disease
73
Perceived role restriction and depressive symptoms in mothers of children with chronic
health conditions
74
Chronicity of maternal depressive symptoms, maternal sensitivity, and child functioning
at 36 months
75
Mothers' experiences of living worried when parenting children with spina bifida
76
Employment, child care, and mental health of mothers caring for children assisted by
technology.
77
Parenting stress and mothers of young children with chronic illness: a cross-cultural
study
78
Mothers' experiences caring for children with disabilities who require a gastrostomy tub
79
Schizophrenia and safety of parenting of infants: a report from a U.K. mother and baby
service
80
Effects of pediatric chronic physical disorders on child and family adjustment
81
First person account: paranoid schizophrenia--a daughter's story
82
When a family member has a chronic, fatal illness.
83
Maternal sensitivity in a developing society: the context of urban poverty and infant
chronic undernutrition
84
"One body for two". The problem of boundaries between chronically ill adolescents and
their mothers.
85
Psychiatric aspects of severe chronic asthma in infants, children and adolescents.
86
What causes stress in mothers of chronically ill children?
87
Perception of the impact of a child's chronic illness: does it predict maternal mental
health?
88
Relationships of self-esteem and efficacy to psychological distress in mothers of children
with chronic physical illnesses.
89
The process of empowerment in mothers of chronically ill children.
90
Sorrow that lives on
91
Longitudinal analysis of communication deviance in the families of schizophrenic
patients.
92
Clinical survey of a psychiatric mother and baby unit: characteristics of 100 consecutive
admissions.
93
Larissa Sauder
A: Ph, Wochenbett
A: Ph, kein erleben
A:Po,Fokus Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A: Ph, Wochenbett
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A: Ph, Fokus
Sicherheit Kinder
A:Po,kranke Kinder
A:Po,Fokus Kinder
E
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
E
A: nicht erleben
A: nicht erleben
66
Maternal child-rearing behavior in three groups: cystic fibrosis, insulin-dependent
diabetes mellitus,
94
Chronic illness in Lebanese preschoolers: impact of illness and child temperament on the
family
95
Social support received by mothers of chronically ill children.
96
Predictors of maternal adjustment to a child with mental retardation
97
Caring for a chronically ill infant: a Paradigm case of maternal rehearsal in the neonatal
intensive care unit
98
In the eyes of the beholder: family and maternal influences on perceptions of adjustment
of children with a chronic illness
99
Understanding chronic bulimia: a four psychologies approach.
100
Young children of schizophrenic mothers: difficulties of intervention.
101
Unforgettable patients
102
Breastfeeding during maternal or infant illness.
103
Behavioral assessment of chronic headaches in children
104
Siblings of chronically ill children: a question of vulnerability versus resilience.
105
Transitional object and children with chronic disease. Comparative study of the forms of
transitional object among children with diabetes mellitus or rheumatic disease
106
Family adaptation to a child's chronic illness
107
Parental management of fear in chronically ill and healthy children
108
A study on the grief and coping pattern of mothers who have a chronically ill child
109
Who commits patricide?
110
Mothers with chronic illness: a predicament of social construction.
111
The awareness of primary physicians of the psychosocial adjustment of children with a
chronic illness.
112
Impact on families caring for an infant with apnea
113
Preliminary observations on maternal rating of health of children: data from three
subspecialty clinics
114
How a chronically ill mother manages
115
Delusional disorder in mother and daughter: case report.
116
Testing the validity of categories in a theoretical perspective on chronic illness
117
Patterns of interaction between mothers and their chronically ill infants.
118
Face-to-face interactions of depressed mothers and their infants.
119
Chronic pain: economic, psychosocial, ethical, preventive, and medical aspects
120
Uncertainty and its relation to the psychological and social correlates of chronic illness in
children
121
Chronic undernutrition and cognitive abilities.
122
Understanding the impact of chronic childhood illness on families
Larissa Sauder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
E
A: Po, keine kranken
Mütter
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A?
E
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
E
A:Po,kranke Kinder
A:Po,kranke Kinder
E
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
67
123
Maternal conceptual set development: identifying patterns of maternal response to
chronically ill infant crying
124
Maternal response to their chronically ill infants' attachment behavior of crying.
125
Gender role and family relationships in adolescent children of chronic schizophrenic
mothers: findings from a longitudinal study of wholefamilies
126
Multi-familyencounter group in a residence for chronic patients
127
Chronic encopresis: a system based psychodynamic approach
128
Parenting attitudes: the role of personality style and childhood long-term illness
129
Treating chronic constipation in children
130
Short-term group therapy for mothers of leukemic children. What professional staff can
do to help parents cope with chronic Illness.
131
Psychosomatic aspects of constipation in childhood
132
Help for sick children at the child guidance center
133
The high school student as change agent. Behavior modification of chronic depression
134
Areas of responsibility in the health care of multiply handicapped children
135
Intervention in a pathological cycle of anxiety.
136
Compliance with instructions in the evaluation of therapeutic efficacy. A common but
frequently unrecognized major variable.
137
Hospitalization of chronically sick children
138
Studies in medical psychology: a brief survey
139
Social and psychological consequences of chronic disease in childhood
140
Does malnutrition cause permanent mental retardation in human beings?
141
Psychological aspects of chronic haemodialysis.
142
Mothers of disabled children--the value of weekly group meeting
143
Psychological problems in chronic nephropathies in children
144
Transference, somatization, and symbiotic need
145
School phobia--its classification andrelationship to dependency
146
Multiple therapeutic approaches and theireffects on chronicity: case report
147
Multiple therapeutic approaches and their effects on chronicity: case report
148
Chronic disease in childhood: a study of family reactions
149
A clinical specialist works with a mother in the care of a chronically ill child
150
The presentation by the mother of the disease of her child. (Study of 10 cases of chronic
nephropathies)
151
Smiling in schizophrenia
A:Po,kranke Kinder
Eingeschlossene Titel -> Abstracts_151<14<3
1/141
Psychological aspects of chronic haemodialysis.
Bemerkung
A:keine Lit
Larissa Sauder
A:Po,kranke Kinder
A:Po,Fokus Kinder
E
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A: Po, keine kranke
Mütter
A: Fokus Adhärenz
A:Po,kranke Kinder
A?
A:Po,kranke Kinder
A: Po, keine kranken
Mütter
E
A:Po,kranke Kinder
A:Po,kranke Kinder
A?
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
A:Po,kranke Kinder
68
-kein Abstract
2/119
3/126
Multi-familyencounter group in a residence for chronic patients
- Article in french
4/119
5/114
How a chronically ill mother manages
6/110
Mothers with chronic illness: a predicament of social construction.
Thorne Sally E 1999
In the context of a larger qualitative study, a database including extensive interviews with
a subset of sixteen chronically ill mothers was obtained. Secondary analysis revealed
that the women's concerns about themselves and their children included issues of
performance, availability, dependency, and socialization. Further, these women reported
that the health care system seemed incapable of recognizing or accounting for the
profound interrelationship between their mothering and their illness. Analysis of these
findings in terms of the conflicting social obligations inherent in the roles of “mother”; and
of “chronically ill person”; provides a means by which to understand the women's
impressions that it was a contradiction in terms to be both an effective mother and a good
patient.
7/100
Young children of schizophrenic mothers: difficulties of intervention.
Grünbaum L1, Gammeltoft M.
Casework by Danish local social agencies on behalf of 11 children of chronically ill
schizophrenic mothers is retrospectively analyzed, along with documentation from
psychiatric hospitals, consulting child specialists, and other health professionals. Findings
point to a need for earlier and more precise assessment of the mother's parenting
abilities as measured against the severity of her illness and the vulnerability of her child.
8/90
Sorrow that lives on
-kein abstract
9/82
When a family member has a chronic, fatal illness.
Primomo, Janet PhD, RN 1997
Helping people deal with chronic and life-threatening illness in a family member can be
one of the most difficult challenges you face. While doing my graduate work I became
familiar with nursing's growing body of literature on families and chronic illness. Valuable
as that literature is, no study that I've seen fully depicts or accounts for the kind of
upheaval that occurred in my family over the 21 years of my mother's intermittent
struggle with metastatic breast cancer. Perhaps what I learned from that experience will
complement the personal, clinical, and theoretical information you've assimilated about
the effects of serious illness on families.
10/59
Body, mother, mind: anorexia, femininity and the intrusive object
Lawrence M 2002
This paper takes as its starting point the preponderance of female to male patients who
suffer from anorexia. The author suggests that there may be something specific about
certain experiences of femaleness which predispose towards anxieties of intrusion. Two
contemporary theories of the aetiology of anorexia are outlined. Both of these suggest
that the problem has its origins in intrusion or invasion of different sorts. The author
suggests that many women who suffer from anorexia have an intrusive object instated in
their minds, which may not necessarily be the result of actual intrusions in external
reality. In the final part of the paper, the author examines the intrusiveness of anorexic
patients in the transference and suggests that such patients very often harbour profound
phantasies of intruding between the parents, with a wish to regain their special place with
mother, untroubled by the presence of father. It is further suggested that the
psychopathology underlying certain cases of anorexia leads to a failure in symbolisation.
This failure in turn complicates the clinical picture, making such patients particularly
difficult to think with about their difficulties.
11/49
Sandelowski M, Barroo J, 2003
Metasummary and metasynthesis techniques were used to integrate findings pertaining
to motherhood in 56 reports of qualitative studies conducted with HIV-positive women.
Motherhood in the context of maternal HIV infection entailed work directed toward the
Larissa Sauder
A:keine Lit
A: nicht
deutsch/englisch
A: keine Lit
A:Fachartikel
E
A: nicht erleben der
Mutter
A:?
A: nicht erleben der
Mütter
E
V
69
illness itself and the social consequences of having HIV infection in the service of two
primary goals: the protection of children from HIV infection and HIV-related stigma and
the preservation of a positive maternal identity. Motherhood both intensified and
mitigated the negative physical and social effects of HIV infection. HIV-positive mothers
engaged in a distinctive kind of maternal practice-virtual motherhood-to resist forces that
disrupted their relationships with and ability to care for their children, as well as their
identities as mothers.
12/38
The relationship between maternal chronic pain and child adjustment: the role of
parenting as a mediator
Evans S, Shipton E.A., Keenan T. 2006
The role of parenting in the relationship between maternal chronic pain and negative
child outcomes, including internalizing, externalizing, and social and health problems,
was investigated. Parenting strategies used by mothers with chronic pain were compared
to parenting strategies used by a control group of mothers without pain. Thirty-nine
mothers experiencing chronic pain, their 55 children, 35 pain-free mothers, and their 48
children participated in the study. The results showed that for mothers with chronic pain,
dysfunctional parenting strategies and the quality of the mother-child relationship were
related to negative child outcomes. Mothers with chronic pain were more likely to engage
in lax parenting and report reduced relationship quality with children than were control
mothers. For the chronic pain group, over-reactive parenting was found to mediate the
relationship between maternal physical functioning and child adjustment. Dysfunctional
parenting strategies may constitute part of the risk that maternal chronic pain poses for
children. The similarities between the impact of maternal chronic pain on child adjustment
and that of other maternal stressors, such as depression, are discussed.
A: Nicht erleben
PERSPECTIVE:
In mothers with chronic pain, poor maternal physical functioning was associated with
increased maternal over-reactive behavior that was in turn related to poor child
adjustment. Maternal over-reactive behavior did not, however, differ in chronic pain and
control mothers.
13/33
When you have children, you're obliged to live': motherhood, chronic illness and
biographical disruption
Wilson S., 2007
identity, in this instance HIV infection and motherhood. It is argued that, viewed in this
light, biographical disruption remains a powerful analytic framework with which to explore
the intense threat which may be posed to key identities by chronic, potentially fatal
illnesses, and the fundamental re-working of such identities occasioned by such threats.
With reference to the empirical study on which this paper draws, it is shown that the
twelve respondents' emphasis on their need to survive and to protect their children,
represented a fundamental re-formulation of their identities as mothers and, therefore, a
type of biographical disruption while paradoxically also containing elements of
biographical reinforcement. It is further argued that the incorporation of such key
identities into the analysis problematizes work that suggests that biographical disruption
is less relevant to those who have experienced difficult lives, while also highlighting the
need to take greater account of gender and caring responsibilities in further work in this
field.
14/29
Dealing with chronic pain: giving voice to the experiences of mothers with chronic pain
and their children
Evans S., de Souza L., 2008
Despite the substantial monetary, personal, and social cost of chronic pain, research into
the family life of sufferers is wanting. Parents dealing with chronic pain, as well as their
children, have been particularly neglected. Using qualitative interview data from 16
mothers suffering from a variety of chronic pain conditions, and their 21 children, aged 6
to 12 years, we explored the impact of maternal chronic pain on mothers and children.
Consistent with a gains-and-loss theory and the strengths perspective, the findings
revealed both positive and challenging aspects of pain. Despite the presence of risks-including maternal stress, parenting difficulties, and children's distress--maternal chronic
pain also provided opportunities for growth in many families. The findings suggest that
maternal chronic pain can catalyze enhanced development as well as adversity.
Researchers and clinicians should be aware of the pitfalls facing families dealing with
chronic pain, while remaining open to the possibility that some families might flourish.
Larissa Sauder
E
V
70
151201 Search_P_2
Results: 1-3 of3
1
Disruptions in serotonergic regulation of cortical glutamate release in primate insular
cortex in response to chronic ethanol and nursery rearing
G.M. Alexander, J.D. Graef, J.A. Hammarback, B.K. Nordskog, E.J. Burnett, J.B.
Daunais, A.J. Bennett, D.P. Friedman, S.J. Suomi, D.W. Godwin Neuroscience, Volume
207, Issue null, Pages 167-181
Bemerkung
2
Impact of a Child's Chronic Illness on Maternal Sleep and Daytime Functioning
Lisa J. Meltzer, PhD; Jodi A. Mindell, PhD
3
A: Po, kk
Eingeschlossene Titel -> Abstract 1<1
1/3
Metasummary and metasynthesis techniques were used to integrate findings pertaining to
motherhood in 56 reports of qualitative studies conducted with HIV-positive women.
Motherhood in the context of maternal HIV infection entailed work directed toward the illness
itself and the social consequences of having HIV infection in the service of two primary
goals: the protection of children from HIV infection and HIV-related stigma and the
distinctive kind of maternal practice-virtual motherhood-to resist forces that disrupted their
relationships with and ability to care for their children, as well as their identities as mothers.
151201_Search_P_3
Results: 1-163 of 163
1
Backman CL, Smith Ldel F, Smith S, Montie PL, Suto M. Experiences of mothers
living with inflammatory arthritis. Arthritis Rheum. 2007 Apr 15;57(3):381-8.
PubMed PMID: 17394223.
2
McNeill T. Fathers' experience of parenting a child with juvenile rheumatoid
arthritis. Qual Health Res. 2004 Apr;14(4):526-45. PubMed PMID: 15068578.
3
Sundquist K, Li X, Hemminki K, Sundquist J. Subsequent risk of hospitalization
for neuropsychiatric disorders in patients with rheumatic diseases: a nationwide
study from Sweden. Arch Gen Psychiatry. 2008 May;65(5):501-7. doi:
10.1001/archpsyc.65.5.501. PubMed PMID: 18458201.
4
Renaud MT. We are mothers too: childbearing experiences of lesbian families. J
Obstet Gynecol Neonatal Nurs. 2007 Mar-Apr;36(2):190-9. PubMed PMID: 17371524.
5
Barlow JH, Cullen LA, Foster NE, Harrison K, Wade M. Does arthritis influence
perceived ability to fulfill a parenting role? Perceptions of mothers, fathers
and grandparents. Patient Educ Couns. 1999 Jun;37(2):141-51. PubMed PMID:
14528541.
6
White CP, Mendoza J, White MB, Bond C. Chronically ill mothers experiencing
pain: relational coping strategies used while parenting young children. Chronic
Illn. 2009 Mar;5(1):33-45. doi: 10.1177/1742395309102820. PubMed PMID: 19276224
7
White CP, White MB, Fox MA. Maternal fatigue and its relationship to the
caregiving environment. Fam Syst Health. 2009 Dec;27(4):325-45. doi:
10.1037/a0018284. PubMed PMID: 20047356.
8
Poole JL, Rymek-Gmytrasiewicz M, Mendelson C, Sanders M, Skipper B. Parenting:
the forgotten role of women living with systemic lupus erythematosus. Clin
Rheumatol. 2012 Jun;31(6):995-1000. doi: 10.1007/s10067-011-1929-5. Epub 2012 Jan
12. PubMed PMID: 22237408.
9
Mitton DL, Treharne GJ, Hale ED, Williams RA, Kitas GD. The health and life
experiences of mothers with rheumatoid arthritis: a phenomenological study.
Larissa Sauder
A:Ph, ne
E
Bemerkung
E
D
V
Bemerkung
E
A: Po, Väter
A: Po, keine
Mütter
A: Po, nicht
chron.k.
E
E
E
E
E
71
Musculoskeletal Care. 2007 Dec;5(4):191-205. PubMed PMID: 17893844.
10
Ostlie IL, Johansson I, M√∂ller A. Struggle and adjustment to an insecure
everyday life and an unpredictable life course. Living with juvenile idiopathic
arthritis from childhood to adult life - an interview study. Disabil Rehabil.
2009;31(8):666-74. doi: 10.1080/09638280802305986. PubMed PMID: 18979305.
11
Power TG, Dahlquist LM, Thompson SM, Warren R. Interactions between children
with juvenile rheumatoid arthritis and their mothers. J Pediatr Psychol. 2003
Apr-May;28(3):213-21. Erratum in: J Pediatr Psychol. 2003 Jul-Aug;28(5):following
page 373. PubMed PMID: 12654947.
12
Hewlett S, Cockshott Z, Byron M, Kitchen K, Tipler S, Pope D, Hehir M.
Patients' perceptions of fatigue in rheumatoid arthritis: overwhelming,
uncontrollable, ignored. Arthritis Rheum. 2005 Oct 15;53(5):697-702. PubMed PMID:
16208668.
13
Andrews NR, Chaney JM, Mullins LL, Wagner JL, Hommel KA, Jarvis JN. The
differential effect of child age on the illness intrusiveness--parent distress
relationship in juvenile rheumatic disease. Rehabil Psychol. 2009
Feb;54(1):45-50. PubMed PMID: 19618702.
14
Smiley WK. The eye in arthritis. Ann Phys Med. 1969 Nov;10(4):157-62. Review.
15
Lustig JL, Ireys HT, Sills EM, Walsh BB. Mental health of mothers of children
with juvenile rheumatoid arthritis: appraisal as a mediator. J Pediatr Psychol.
1996 Oct;21(5):719-33. PubMed PMID: 8936899.
16
Pelaez-Ballestas I, Romero-Mendoza M, Ramos-Lira L, Caballero R,
Hern√°ndez-Gardu√±o A, Burgos-Vargas R. Illness trajectories in Mexican children
with juvenile idiopathic arthritis and their parents. Rheumatology (Oxford). 2006
Nov;45(11):1399-403. Epub 2006 Apr 13. PubMed PMID: 16613916.
17
Nikolaus S, Bode C, Taal E, van de Laar MA. New insights into the experience
of fatigue among patients with rheumatoid arthritis: a qualitative study. Ann
Rheum Dis. 2010 May;69(5):895-7. doi: 10.1136/ard.2009.118067. Epub 2009 Oct 22.
18
Kearney MH, Murphy S, Rosenbaum M. Mothering on crack cocaine: a grounded
theory analysis. Soc Sci Med. 1994 Jan;38(2):351-61. PubMed PMID: 8140462.
19
Lee SN, Long A, Boore J. Taiwanese women's experiences of becoming a mother
to a very-low-birth-weight preterm infant: a grounded theory study. Int J Nurs
Stud. 2009 Mar;46(3):326-36. doi: 10.1016/j.ijnurstu.2008.10.004. Epub 2008 Dec
16. PubMed PMID: 19091313.
20
Stamm T, Lovelock L, Stew G, Nell V, Smolen J, Jonsson H, Sadlo G, Machold K.
I have mastered the challenge of living with a chronic disease: life stories of
people with rheumatoid arthritis. Qual Health Res. 2008 May;18(5):658-69. doi:
10.1177/1049732308316348. PubMed PMID: 18420538.
21
S√§llfors C, Fasth A, Hallberg LR. Oscillating between hope and despair--a
qualitative study. Child Care Health Dev. 2002 Nov;28(6):495-505. PubMed PMID:
12568479.
22
Fenwick J, Barclay L, Schmied V. Craving closeness: a grounded theory
analysis of women's experiences of mothering in the Special Care Nursery. Women
Birth. 2008 Jun;21(2):71-85. doi: 10.1016/j.wombi.2008.03.006. Epub 2008 May 6.
23
Guell C. Painful childhood: children living with juvenile arthritis. Qual
Health Res. 2007 Sep;17(7):884-92. PubMed PMID: 17724100.
24
Shaul MP. Transitions in chronic illness: rheumatoid arthritis in women.
Rehabil Nurs. 1997 Jul-Aug;22(4):199-205. PubMed PMID: 9275811.
25
Mengshoel AM. Living with a fluctuating illness of ankylosing spondylitis: a
Larissa Sauder
A: Po, keine
Mütter
A: Po, kk
A: Po, keine
Mütter
A: Po, kk
A:?
A: Po, kk
A: Po, kk
A: Po, keine
Mütter
A: Ph, ne
A: Po, nicht
chron.k
E
A: keine Mütter
E
A: Po, kk
A: Po, keine
Mütter
A: Po, keine
Mütter
72
qualitative study. Arthritis Rheum. 2008 Oct 15;59(10):1439-44. doi:
10.1002/art.24103. PubMed PMID: 18821643.
26
Houldin AD. A qualitative study of caregivers' experiences with newly
diagnosed advanced colorectal cancer. Oncol Nurs Forum. 2007 Mar;34(2):323-30.
27
DeVellis RF, Patterson CC, Blalock SJ, Renner BR, DeVellis BM. Do people with
rheumatoid arthritis develop illness-related schemas? Arthritis Care Res. 1997
Apr;10(2):78-88. PubMed PMID: 9313396.
28
Paczkowski E, Baker BL. Parenting children with and without developmental
delay: the role of self-mastery. J Intellect Disabil Res. 2007 Jun;51(Pt.
6):435-46. PubMed PMID: 17493027.
29
Cleanthous S, Newman SP, Shipley M, Isenberg DA, Cano SJ. What constitutes
uncertainty in systemic lupus erythematosus and rheumatoid arthritis? Psychol
Health. 2013;28(2):171-88. doi: 10.1080/08870446.2012.701628. Epub 2012 Jul 10.
30
Plach SK, Stevens PE, Moss VA. Corporeality: women's experiences of a body
with rheumatoid arthritis. Clin Nurs Res. 2004 May;13(2):137-55. PubMed PMID:
15104856.
31
Francis-Connolly E. Toward an understanding of mothering: a comparison of two
motherhood stages. Am J Occup Ther. 2000 May-Jun;54(3):281-9. PubMed PMID:
10842684.
32
Eyckmans L, Hilderson D, Westhovens R, Wouters C, Moons P. What does it mean
to grow up with juvenile idiopathic arthritis? A qualitative study on the
perspectives of patients. Clin Rheumatol. 2011 Apr;30(4):459-65. doi:
10.1007/s10067-010-1444-0. Epub 2010 Apr 10. PubMed PMID: 20383546.
33
Siegel DM. Chronic arthritis in adolescence. Adolesc Med State Art Rev. 2007
May;18(1):47-61, viii. Review. PubMed PMID: 18605390.
34
Humbert L, Roberts TL. The value of a learner's stance: lessons learned from
pregnant and parenting women. Matern Child Health J. 2009 Sep;13(5):588-96. doi:
10.1007/s10995-008-0373-x. Epub 2008 Jun 11. PubMed PMID: 18546065.
35
Smithbattle L. Developing a caregiving tradition in opposition to one's past:
lessons from a longitudinal study of teenage mothers. Public Health Nurs. 2000
Mar-Apr;17(2):85-93. PubMed PMID: 10760190.
36
Oliver S, Bosworth A, Airoldi M, Bunyan H, Callum A, Dixon J, Home D, Lax I,
O'Brien A, Redmond A, Ryan S, Scott DG, Steuer A, Tanner L. Exploring the
healthcare journey of patients with rheumatoid arthritis: a mapping project implications for practice. Musculoskeletal Care. 2008 Dec;6(4):247-66. doi:
10.1002/msc.139. PubMed PMID: 18785194.
37
Cosh JA. Arthritis and the heart. Bristol Med Chir J. 1969
Oct;84(312):145-51. PubMed PMID: 5824916.
38
Repping-Wuts H, Uitterhoeve R, van Riel P, van Achterberg T. Fatigue as
experienced by patients with rheumatoid arthritis (RA): a qualitative study. Int
J Nurs Stud. 2008 Jul;45(7):995-1002. Epub 2007 Jul 26. PubMed PMID: 17662291.
39
Archenholtz B, Burckhardt CS, Segesten K. Quality of life of women with
systemic lupus erythematosus or rheumatoid arthritis: domains of importance and
dissatisfaction. Qual Life Res. 1999 Aug;8(5):411-6. PubMed PMID: 10474282.
40
Zhang M, McGrath C, H√§gg U. Who knows more about the impact of malocclusion
on children's quality of life, mothers or fathers? Eur J Orthod. 2007
Apr;29(2):180-5. PubMed PMID: 17489000.
41
Raymond JE. 'Creating a safety net': Women's experiences of antenatal
depression and their identification of helpful community support and services
during pregnancy. Midwifery. 2009 Feb;25(1):39-49. Epub 2007 Mar 29. PubMed PMID:
Larissa Sauder
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, kk
A: Po, keine
Mütter
A: Po, keine
Mütter
E
A: Po, kk
A: Po, kk
A: Po, nicht
chron.k
A: Po, nicht
chron.k
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, kk
A:Po, keine
Mütter
73
17397975.
42
Duarte-Salazar C, Guzm√°n-V√°zquez S, Soto-Molina H, Ch√°idez-Rosales P,
Ilizaliturri-S√°nchez V, Nieves-Silva J, Valero-Gonz√°lez F, Aguilera-Zepeda JM.
Disability impact on quality of life in Mexican adults with juvenile idiopathic
arthritis and juvenile ankylosing spondylitis. Clin Exp Rheumatol. 2007
Nov-Dec;25(6):922-7. PubMed PMID: 18173931.
43
Sato M, Yamazaki Y, Sakita M, Bryce TJ. Benefit-finding among people with
rheumatoid arthritis in Japan. Nurs Health Sci. 2008 Mar;10(1):51-8. doi:
10.1111/j.1442-2018.2007.00372.x. PubMed PMID: 18257832.
44
Liang MH, Rogers M, Larson M, Eaton HM, Murawski BJ, Taylor JE, Swafford J,
Schur PH. The psychosocial impact of systemic lupus erythematosus and rheumatoid
arthritis. Arthritis Rheum. 1984 Jan;27(1):13-9. PubMed PMID: 6691857.
45
Hall W, Irvine V. E-communication among mothers of infants and toddlers in a
community-based cohort: a content analysis. J Adv Nurs. 2009 Jan;65(1):175-83.
doi: 10.1111/j.1365-2648.2008.04856.x. Epub 2008 Nov 6. PubMed PMID: 19016925.
46
Ostensen M, Rugelsjoen A. Problem areas of the rheumatic mother. Am J Reprod
Immunol. 1992 Oct-Dec;28(3-4):254-5. PubMed PMID: 1285895.
47
Meade T, Sharpe L, Hallab L, Aspanell D, Manolios N. Navigating motherhood
choices in the context of rheumatoid arthritis: women's stories. Musculoskeletal
Care. 2013 Jun;11(2):73-82. doi: 10.1002/msc.1031. Epub 2012 Jul 23. PubMed PMID:
22821856.
48
Lacaille D, White MA, Backman CL, Gignac MA. Problems faced at work due to
inflammatory arthritis: new insights gained from understanding patients'
perspective. Arthritis Rheum. 2007 Oct 15;57(7):1269-79. PubMed PMID: 17907223.
49
Farber RS. Mothers with disabilities: in their own voice. Am J Occup Ther.
2000 May-Jun;54(3):260-8. PubMed PMID: 10842682.
50
Hamilton J, Dagg K, Sturrock R, Anderson J, Banham S. Sleep apnoea caused by
rheumatoid arthritis. Rheumatology (Oxford). 1999 Jul;38(7):679-80. PubMed PMID:
10461485.
51
McDonald HN, Dietrich T, Townsend A, Li LC, Cox S, Backman CL. Exploring
occupational disruption among women after onset of rheumatoid arthritis.
Arthritis Care Res (Hoboken). 2012 Feb;64(2):197-205. doi: 10.1002/acr.20668.
52
Bouros D, Pneumatikos I, Tzouvelekis A. Pleural involvement in systemic
autoimmune disorders. Respiration. 2008;75(4):361-71. doi: 10.1159/000119051.
Epub 2008 Mar 20. Review. PubMed PMID: 18477860.
53
Poole JL, Hare KS, Turner-Montez S, Mendelson C, Skipper B. Mothers with
chronic disease: a comparison of parenting in mothers with systemic sclerosis and
systemic lupus erythematosus. OTJR (Thorofare N J). 2014 Winter;34(1):12-9.
54
Wiginton KL. Illness representations: mapping the experience of lupus. Health
Educ Behav. 1999 Aug;26(4):443-53. PubMed PMID: 10435229.
55
Georgiou SN. Bullying and victimization at school: the role of mothers. Br J
Educ Psychol. 2008 Mar;78(Pt 1):109-25. PubMed PMID: 17535516.
56
inclair VG, Blackburn DS. Adaptive coping with rheumatoid arthritis: the
transforming nature of response shift. Chronic Illn. 2008 Sep;4(3):219-30. doi:
10.1177/1742395308095356. PubMed PMID: 18796511.
57
L√ºtze U, Archenholtz B. The impact of arthritis on daily life with the
patient perspective in focus. Scand J Caring Sci. 2007 Mar;21(1):64-70. PubMed
PMID: 17428216.
58
Mengshoel AM. Life strain-related tiredness and illness-related fatigue in
Larissa Sauder
A: Po, keine
Mütter
A: keine Mütter
A: keine Mütter
A: Po, nicht
chron.k
E
E
A: Po, keine
Mütter
E
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
E
A: Po, keine
Mütter
A: Po, keine
chron.k
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
74
individuals with ankylosing spondylitis. Arthritis Care Res (Hoboken). 2010
Sep;62(9):1272-7. doi: 10.1002/acr.20216. PubMed PMID: 20506402.
59
Hejoaka F. Care and secrecy: being a mother of children living with HIV in
Burkina Faso. Soc Sci Med. 2009 Sep;69(6):869-76. doi:
10.1016/j.socscimed.2009.05.041. Epub 2009 Jun 18. PubMed PMID: 19540644.
60
Tummala-Narra P. Contemporary impingements on mothering. Am J Psychoanal.
2009 Mar;69(1):4-21. doi: 10.1057/ajp.2008.37. Review. PubMed PMID: 19295618.
61
Stiffler D, Haase J, Hosei B, Barada B. Parenting experiences with adolescent
daughters when mothers have breast cancer. Oncol Nurs Forum. 2008
Jan;35(1):113-20. doi: 10.1188/08.ONF.113-120. PubMed PMID: 18192160.
62
Salmon J. Fetal alcohol spectrum disorder: New Zealand birth mothers'
experiences. Can J Clin Pharmacol. 2008 Summer;15(2):e191-213. Epub 2008 Jun 1.
63
Grant MI, Foster NE, Wright CC, Barlow JH, Cullen LA. Being a parent or
grandparent with back pain, ankylosing spondylitis or rheumatoid arthritis: a
descriptive postal survey. Musculoskeletal Care. 2004;2(1):17-28. PubMed PMID:
17041965.
64
Braun-Moscovici Y, Markovits D, Rozin A, Toledano K, Nahir AM, Balbir-Gurman
A. Anti-tumor necrosis factor therapy: 6 year experience of a single center in
northern Israel and possible impact of health policy on results. Isr Med Assoc J.
2008 Apr;10(4):277-81. PubMed PMID: 18548981.
65
Full LE, Ruisanchez C, Monaco C. The inextricable link between
atherosclerosis and prototypical inflammatory diseases rheumatoid arthritis and
systemic lupus erythematosus. Arthritis Res Ther. 2009;11(2):217. doi:
10.1186/ar2631. Epub 2009 Apr 3. Review. PubMed PMID: 19435478; PubMed Central
PMCID: PMC2688172.
66
Fegran L, Helseth S, Fagermoen MS. A comparison of mothers' and fathers'
experiences of the attachment process in a neonatal intensive care unit. J Clin
Nurs. 2008 Mar;17(6):810-6. doi: 10.1111/j.1365-2702.2007.02125.x. PubMed PMID:
18279284.
67
Gignac MA, Sutton D, Badley EM. Arthritis symptoms, the work environment, and
the future: measuring perceived job strain among employed persons with arthritis.
Arthritis Rheum. 2007 Jun 15;57(5):738-47. PubMed PMID: 17530672.
68
Laiho K, Tiitinen S, Kaarela K, Helin H, Isom√§ki H. Secondary amyloidosis has
decreased in patients with inflammatory joint disease in Finland. Clin Rheumatol.
1999;18(2):122-3. PubMed PMID: 10357116.
69
Montes G, Halterman JS. Psychological functioning and coping among mothers of
children with autism: a population-based study. Pediatrics. 2007
May;119(5):e1040-6. PubMed PMID: 17473077.
70
Ueno R, Kamibeppu K. Narratives by Japanese mothers with chronic mental
illness in the Tokyo metropolitan area: their feelings toward their children and
perceptions of their children's feelings. J Nerv Ment Dis. 2008
Jul;196(7):522-30. doi: 10.1097/NMD.0b013e31817cf721. PubMed PMID: 18626292.
71
Julien D, Jouvin E, Jodoin E, L'archev√™que A, Chartrand E. Adjustment among
mothers reporting same-gender sexual partners: a study of a representative
population sample from Quebec Province (Canada). Arch Sex Behav. 2008
Dec;37(6):864-76. Epub 2007 Jul 31. PubMed PMID: 17665300.
72
Ostlie IL, Dale O, M√∂ller A. From childhood to adult life with juvenile
idiopathic arthritis (JIA): a pilot study. Disabil Rehabil. 2007 Mar
30;29(6):445-52. PubMed PMID: 17364799.
73
Bradley LA. Psychological aspects of arthritis. Bull Rheum Dis.
1985;35(4):1-12. Review. PubMed PMID: 3915218.
74
Larissa Sauder
A: Po, kk
A: Po, nicht
chron.k
A: Po, Fokus
Kinder
A?
E
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, kk
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, kk
E
A: Po, keine
chron.k
A:Po, kk
A: Po, keine
Mütter
E
75
Bruns A, Hil√°rio MO, Jennings F, Silva CA, Natour J. Quality of life and
impact of the disease on primary caregivers of juvenile idiopathic arthritis
patients. Joint Bone Spine. 2008 Mar;75(2):149-54. Epub 2007 Sep 29. PubMed PMID:
17950652.
75
Roldan CA. Valvular and coronary heart disease in systemic inflammatory
diseases: Systemic Disorders in heart disease. Heart. 2008 Aug;94(8):1089-101.
doi: 10.1136/hrt.2007.132787. Review. PubMed PMID: 18625800.
76
Ramsey-Goldman R, Rothrock N. Fatigue in systemic lupus erythematosus and
rheumatoid arthritis. PM R. 2010 May;2(5):384-92. doi:
10.1016/j.pmrj.2010.03.026. Review. PubMed PMID: 20656619.
77
Dowdell JA, Fenwick J, Bartu A, Sharp J. Midwives' descriptions of the
postnatal experiences of women who use illicit substances: a descriptive study.
Midwifery. 2009 Jun;25(3):295-306. Epub 2007 Jul 5. PubMed PMID: 17614166
78
Hutzal CE, Wright FV, Stephens S, Schneiderman-Walker J, Feldman BM. A
qualitative study of fitness instructors' experiences leading an exercise program
for children with juvenile idiopathic arthritis. Phys Occup Ther Pediatr.
2009;29(4):409-25. doi: 10.3109/01942630903245309. PubMed PMID: 19916825.
79
Cheng KK. Oral mucositis: a phenomenological study of pediatric patients' and
their parents' perspectives and experiences. Support Care Cancer. 2009
Jul;17(7):829-37. doi: 10.1007/s00520-009-0618-2. Epub 2009 Mar 26. PubMed PMID:
19322593.
80
Whitehead E. Understanding the association between teenage pregnancy and
inter-generational factors: a comparative and analytical study. Midwifery. 2009
Apr;25(2):147-54. Epub 2007 Jun 27. PubMed PMID: 17600601.
81
Peters K, Jackson D. Mothers' experiences of parenting a child with attention
deficit hyperactivity disorder. J Adv Nurs. 2009 Jan;65(1):62-71. doi:
10.1111/j.1365-2648.2008.04853.x. PubMed PMID: 19120583.
82
Amin MS, Harrison RL. Understanding parents' oral health behaviors for their
young children. Qual Health Res. 2009 Jan;19(1):116-27. doi:
10.1177/1049732308327243. Epub 2008 Nov 7. PubMed PMID: 18997150.
83
Duma SE, Mekwa JN, Denny LD. Women's journey of recovery from sexual assault
trauma: a grounded theory--part 1. Curationis. 2007 Dec;30(4):4-11. PubMed PMID:
18402415.
84
Gold RH, Bassett LW. Radiologic evaluation of the arthritis foot. Foot Ankle.
1982 May;2(6):332-41. Review. PubMed PMID: 7047327.
85
Chamberlain MA. Social implications of rheumatoid arthritis in young mothers.
Rheumatol Rehabil. 1979;Suppl:70-3. PubMed PMID: 441636.
86
Butcher PR, Wind T, Bouma A. Parenting stress in mothers and fathers of a
child with a hemiparesis: sources of stress, intervening factors and long-term
expressions of stress. Child Care Health Dev. 2008 Jul;34(4):530-41. doi:
10.1111/j.1365-2214.2008.00842.x. PubMed PMID: 19154554.
87
Haque S, Mirjafari H, Bruce IN. Atherosclerosis in rheumatoid arthritis and
systemic lupus erythematosus. Curr Opin Lipidol. 2008 Aug;19(4):338-43. doi:
10.1097/MOL.0b013e328304b65f. Review. PubMed PMID: 18607179.
88
Paris R, Helson R. Early mothering experience and personality change. J Fam
Psychol. 2002 Jun;16(2):172-85. PubMed PMID: 12085730.
89
Sarma PK, Agrawal S, Aggarwal A, Misra R. Systemic lupus erythematosus with
major organ involvement in a patient with systemic-onset juvenile idiopathic
arthritis. J Rheumatol. 2007 Apr;34(4):893-4. PubMed PMID: 17407252.
90
Nisell M, Ojmyr-Joelsson M, Frenckner B, Rydelius PA, Christensson K.
Psychosocial experiences of parents of a child with imperforate anus. J Spec
Pediatr Nurs. 2009 Oct;14(4):221-9. doi: 10.1111/j.1744-6155.2009.00192.x. PubMed
Larissa Sauder
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, nicht
chron.k
A: Po, kk
A:Po, kk
A: Po, nicht
chron.k
A: Po, kk
A: Po, nicht
chron.k
A: Po, nicht
chron.k
A: Po, keine
Mütter
E
A:Po, kk
A: Po, keine
Mütter
A: Po, nicht
chron.k
A: Po, keine
Mütter
A: Po, kk
76
PMID: 19796321.
91
Schildmann J, Grunke M, Kalden JR, Vollmann J. Information and participation
in decision-making about treatment: a qualitative study of the perceptions and
preferences of patients with rheumatoid arthritis. J Med Ethics. 2008
Nov;34(11):775-9. doi: 10.1136/jme.2007.023705. PubMed PMID: 18974408.
92
Sw√§rdh E, Biguet G, Opava CH. Views on exercise maintenance: variations among
patients with rheumatoid arthritis. Phys Ther. 2008 Sep;88(9):1049-60. doi:
10.2522/ptj.20070178. Epub 2008 Jul 24. Erratum in: Phys Ther. 2008
Oct;88(10):1232. PubMed PMID: 18653678.
93
Akar S, Can G, Binicier O, Aksu K, Akinci B, Solmaz D, Birlik M, Keser G,
Akkoc N, Onen F. Quality of life in patients with Takayasu's arteritis is
impaired and comparable with rheumatoid arthritis and ankylosing spondylitis
patients. Clin Rheumatol. 2008 Jul;27(7):859-65. Epub 2007 Dec 21. PubMed PMID:
18097710.
94
Ringold S, Wallace CA, Rivara FP. Health-related quality of life, physical
function, fatigue, and disease activity in children with established
polyarticular juvenile idiopathic arthritis. J Rheumatol. 2009 Jun;36(6):1330-6.
doi: 10.3899/jrheum.081028. Epub 2009 May 1. PubMed PMID: 19411394.
95
Gillespie CA, Woodgate RL, Chalmers KI, Watson WT. "Living with risk":
mothering a child with food-induced anaphylaxis. J Pediatr Nurs. 2007
Feb;22(1):30-42. PubMed PMID: 17234496.
96
Haak M, F√§nge A, Iwarsson S, Ivanoff SD. Home as a signification of
independence and autonomy: experiences among very old Swedish people. Scand J
Occup Ther. 2007;14(1):16-24. PubMed PMID: 17366074.
97
Hart RI, Foster HE, McDonagh JE, Thompson B, Kay L, Myers A, Rapley T. Young
people's decisions about biologic therapies: who influences them and how?
Rheumatology (Oxford). 2015 Jul;54(7):1294-301. doi: 10.1093/rheumatology/keu523.
Epub 2015 Feb 5. PubMed PMID: 25661469; PubMed Central PMCID: PMC4473768.
98
Gearing RE, Selkirk EK, Koren G, Leslie M, Motz M, Zelazo LB, McNeill T,
Lozier FA. Perspectives of mothers with substance use problems on father
involvement. Can J Clin Pharmacol. 2008 Winter;15(1):e99-107. Epub 2008 Feb 1.
99
Huang XY, Sun FK, Yen WJ, Fu CM. The coping experiences of carers who live
with someone who has schizophrenia. J Clin Nurs. 2008 Mar;17(6):817-26. doi:
10.1111/j.1365-2702.2007.02130.x. PubMed PMID: 18279285.
100
Danerek M, Dykes AK. A theoretical model of parents' experiences of threat
of preterm birth in Sweden. Midwifery. 2008 Dec;24(4):416-24. Epub 2007 Oct 23.
101
Ashe B, Taylor M, Dubouloz CJ. The process of change: listening to
transformation in meaning perspectives of adults in arthritis health education
groups. Can J Occup Ther. 2005 Dec;72(5):280-8. PubMed PMID: 16435588.
102
Brodribb WE, Jackson C, Fallon AB, Hegney D. Gender and personal
breastfeeding experience of rural GP registrars in Australia--a qualitative study
of their effect on breastfeeding attitudes and knowledge. Rural Remote Health.
2007 Jul-Sep;7(3):737. Epub 2007 Jul 20. PubMed PMID: 17658955.
103
Tack BB. Fatigue in rheumatoid arthritis. Conditions, strategies, and
consequences. Arthritis Care Res. 1990 Jun;3(2):65-70. PubMed PMID: 2285744.
104
Rheumatoid arthritis: ankylosing spondylitis, associated syndromes, the
disease in children. GP. 1966 Aug;34(2):137-55. PubMed PMID: 5946414.
105
Vuorimaa H, Honkanen V, Konttinen YT, Komulainen E, Santavirta N. Improved
factor structure for self-efficacy scales for children with JIA (CASE) and their
parents (PASE). Clin Exp Rheumatol. 2007 May-Jun;25(3):494-501. PubMed PMID:
17631752.
Larissa Sauder
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A:Po,kk
A:Po,kk
A: Po, nicht
chron.k
A:Po, nicht
chron.k
A:Po, nicht
chron.K.
A: Po, keine
Mütter
A:Po,kk
A: Po, keine
Mütter
A: Po, nicht
chron.k
A: Po, keine
Mütter
A:Po,kk
A:Po,kk
77
106
H√§ggman-Laitila A, Pietil√§ AM. Perceived benefits on family health of small
groups for families with children. Public Health Nurs. 2007 May-Jun;24(3):205-16.
107
Neill J. Health as expanding consciousness: seven women living with multiple
sclerosis or rheumatoid arthritis. Nurs Sci Q. 2005 Oct;18(4):334-43. PubMed
PMID: 16210749.
108
Tomietto P, Annese V, D'agostini S, Venturini P, La Torre G, De Vita S,
Ferraccioli GF. General and specific factors associated with severity of
cognitive impairment in systemic lupus erythematosus. Arthritis Rheum. 2007 Dec
15;57(8):1461-72. PubMed PMID: 18050188.
109
Nilsson I, Fitinghoff H, Lilja M. Continuing to work after the onset of
rheumatoid arthritis. Work. 2007;28(4):335-42. PubMed PMID: 17522454.
110
Evans S, de Souza L. Dealing with chronic pain: giving voice to the
experiences of mothers with chronic pain and their children. Qual Health Res.
2008 Apr;18(4):489-500. doi: 10.1177/1049732308315433. PubMed PMID: 18354048.
111
Brown GM, Dare CM, Smith PR, Meyers OL. Important problems identified by
patients with chronic arthritis. S Afr Med J. 1987 Jul 18;72(2):126-8. PubMed
PMID: 3616784.
112
Olson J, Esdaile S. Mothering young children with disabilities in a
challenging urban environment. Am J Occup Ther. 2000 May-Jun;54(3):307-14. PubMed
PMID: 10842687.
113
Lindsley CB. The adolescent with arthritis. Compr Ther. 1996
Jan;22(1):48-51. Review. PubMed PMID: 8654025.
114
Edeiken J. Radiologic approach to arthritis. Semin Roentgenol. 1982
Jan;17(1):8-15. PubMed PMID: 7071619.
115
Loeppenthin K, Esbensen B, Ostergaard M, Jennum P, Thomsen T, Midtgaard J.
Physical activity maintenance in patients with rheumatoid arthritis: a
qualitative study. Clin Rehabil. 2014 Mar;28(3):289-99. doi:
10.1177/0269215513501526. Epub 2013 Sep 6. PubMed PMID: 24013270.
116
Akay AP, Unsal E, Ozbek A, Baykara B. Psychosocial aspects of Turkish
mothers of children with juvenile idiopathic arthritis. Rheumatol Int. 2006
May;26(7):685-6. Epub 2005 Sep 6. PubMed PMID: 16155758.
117
Mendelson C. Managing a medically and socially complex life: women living
with lupus. Qual Health Res. 2006 Sep;16(7):982-97. PubMed PMID: 16894227.
118
Mendelson C. Gentle hugs: Internet listservs as sources of support for women
with lupus. ANS Adv Nurs Sci. 2003 Oct-Dec;26(4):299-306. PubMed PMID: 14674578.
119
Permut JB. Life with lupus: the patient's support system. Dermatol Nurs.
1994 Apr;6(2):99-103. PubMed PMID: 7946834.
120
Klein TP, Pope A, Abbott R. Social Interactions of School-Aged Children With
CFA: Mothers' Perspectives and Advice. Cleft Palate Craniofac J. 2014
May;51(3):300-7. doi: 10.1597/12-178. Epub 2013 Sep 4. PubMed PMID: 24003837.
121
Ellefsen F. Juvenile ankylosing spondylitis. Acta Rheumatol Scand.
1967;13(1):14-9. PubMed PMID: 6025361.
122
Ng LL. Psychological aspects of rheumatic diseases. Singapore Med J. 1992
Feb;33(1):79-81. PubMed PMID: 1598613.
123
Sanderson T, Calnan M, Morris M, Richards P, Hewlett S. Shifting
normalities: interactions of changing conceptions of a normal life and the
normalisation of symptoms in rheumatoid arthritis. Sociol Health Illn. 2011
May;33(4):618-33. doi: 10.1111/j.1467-9566.2010.01305.x. Epub 2011 Feb 1. PubMed
PMID: 21281314.
Larissa Sauder
A: Po, nicht
chron.k
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
E
A: Po, keine
Mütter
A:Po,kk
A:Po,kk
A: Po, keine
Mütter
A: Po, keine
Mütter
A:Po,kk
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A:Po,kk
A:Po,kk
A: Po, keine
Mütter
A: Po, keine
Mütter
78
124
Dubouloz CJ, Laporte D, Hall M, Ashe B, Smith CD. Transformation of meaning
perspectives in clients with rheumatoid arthritis. Am J Occup Ther. 2004
Jul-Aug;58(4):398-407. PubMed PMID: 15315246.
125
Hooper H, Ryan S, Hassell A. The role of social comparison in coping with
rheumatoid arthritis: an interview study. Musculoskeletal Care.
2004;2(4):195-206. PubMed PMID: 17041983.
126
James WH. The rates of alcohol-related deaths from accidents and violence in
subjects with ankylosing spondylitis and rheumatoid arthritis. Rheumatology
(Oxford). 1999 Jan;38(1):91. PubMed PMID: 10334693.
127
Sathananthan R, David J. The adolescent with rheumatic disease. Arch Dis
Child. 1997 Oct;77(4):355-8. Review. PubMed PMID: 9389245; PubMed Central PMCID:
PMC1717338.
128
Routh DK. Commentary: juvenile rheumatic disease as a psychosocial stressor.
J Pediatr Psychol. 2003 Jan-Feb;28(1):41-3. PubMed PMID: 12490629.
129
Nyman A, Lund ML. Influences of the social environment on engagement in
occupations: the experience of persons with rheumatoid arthritis. Scand J Occup
Ther. 2007;14(1):63-72. PubMed PMID: 17366079.
130
Rossiter C, Power T, Fowler C, Jackson D, Hyslop D, Dawson A. Mothering at a
Distance: what incarcerated mothers value about a parenting programme. Contemp
Nurse. 2015 Nov 11:1-18. [Epub ahead of print] PubMed PMID: 26453380.
131
Eckblad G, Vandvik IH. A computerized scoring procedure for the Kvebaek
Family Sculpture Technique applied to families of children with rheumatic
diseases. Fam Process. 1992 Mar;31(1):85-98. PubMed PMID: 1559598.
132
Neill J. Exploring underlying life patterns of women with multiple sclerosis
or rheumatoid arthritis: comparison with NANDA dimensions. Nurs Sci Q. 2005
Oct;18(4):344-52. PubMed PMID: 16210750.
133
Wilson S, Morse JM, Penrod J. Absolute involvement: the experience of
mothers of ventilator-dependent children. Health Soc Care Community. 1998
Jul;6(4):224-233. PubMed PMID: 11560594.
134
Rothschild BM. Re: "Coexisting seronegative rheumatoid arthritis and
ankylosing spondylitis". Clin Rheumatol. 2004 Dec;23(6):564; author reply 565.
135
MARTEL W, PAGE JW. Cervical vertebral erosions and subluxations in
rheumatoid arthritis and ankylosing spondylitis. Arthritis Rheum. 1960
Dec;3:546-56. PubMed PMID: 13767262
136
Boettiger Le, Malmquist E, Olhagen B. Serum Protein-Bound Carbohydrates In Rheumatic
Disease. I. Results Of Differentiated Analyses In Various Rheumatic
DISORDERS. Ann Rheum Dis. 1964 Nov;23:489-94. PubMed PMID: 14229583; PubMed
Central PMCID: PMC1030965.
137
Achterberg-Lawlis J. The psychological dimensions of arthritis. J Consult
Clin Psychol. 1982 Dec;50(6):984-92. PubMed PMID: 7174984.
138
Goldin M, Black A. Evaluation Of A New Preserved Latex Antigen For The Sero-Diagnosis Of
Rheumatoid Arthritis. Ann Rheum Dis. 1964 Nov;23:485-8. PubMed PMID: 14229582;
PubMed Central PMCID: PMC1030964.
139
Cooper D. Stress--something had to give. Nurs Times. 1991 Nov
13-19;87(46):28-9. PubMed PMID: 1762960.
140
Jarvis JN. The unique clinical presentation of children with chronic
arthritis: putting the pediatrics in pediatric rheumatology. Curr Probl Pediatr
Adolesc Health Care. 2006 Mar;36(3):80-2. PubMed PMID: 16473283.
141
Neuropsychiatric problems are abnormally prevalent in patients with RA and
Larissa Sauder
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A:Po,kk
A: Po, keine
Mütter
A: Po, nicht
chron.k
A:Po,kk
A: Po, keine
Mütter
A:Po,kk
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
A:Po, kk
A: Po, keine
Mütter
79
lupus. Health News. 2005 Dec;11(12):2. PubMed PMID: 16419174.
142
Mieto FS, Bousso RS. The mothers' experiences in the pediatrics hemodialysis
unit. J Bras Nefrol. 2014 Oct-Dec;36(4):460-8. doi: 10.5935/0101-2800.20140066.
English, Portuguese. PubMed PMID: 25517274.
143
Symmons D. Commentary: Juvenile idiopathic arthritis--issues of definition
and causation. Int J Epidemiol. 2005 Jun;34(3):671-2. Epub 2005 Apr 25. PubMed
PMID: 15851394.
144: Francis-Connolly EB, Sytniak K. Mothering work and emerging adult children.
Work. 2015;50(3):465-72. doi: 10.3233/WOR-151998. PubMed PMID: 25672961.
145
Stepan J, Marsikova L, Prokopova D. On The Problem Of The Interference Of
Chloroquine With The Regulatory Mechanisms In Man. Med Pharmacol Exp Int J Exp
Med. 1965;12:381-7. PubMed PMID: 14332242.
146
Berman H, Mason R, Hall J, Rodger S, Classen CC, Evans MK, Ross LE, Mulcahy
GA, Carranza L, Al-Zoubi F. Laboring to mother in the context of past trauma: the
transition to motherhood. Qual Health Res. 2014 Sep;24(9):1253-64. doi:
10.1177/1049732314521902. Epub 2014 Feb 5. PubMed PMID: 24501114; PubMed Central
PMCID: PMC4232343.
147
WILLIAMS GF. Management of juvenile rheumatoid arthritis; the problem of
long-term rehabilitation. Calif Med. 1957 Oct;87(4):244-7. PubMed PMID: 13460740;
PubMed Central PMCID: PMC1512175
148
Stepan J, Kralova M, Vojtisek O. Eosinopenia And Acth-Electrolyte Test After Chloroquine
Diphosphate Infusion In Patients With Articular Disease. Med
Pharmacol Exp Int J Exp Med. 1965;12:373-80. PubMed PMID: 14332241.
149
Schrager S. Doctorhood and motherhood. Fam Pract Manag. 2006 Feb;13(2):88.
150
Dunbar SB. Yolanda's story: An antenarratological approach to understanding
mothering work. Work. 2015;50(3):451-6. doi: 10.3233/WOR-151997. PubMed PMID:
25672960.
151
Brooks P, Priestley D. On living with rheumatoid arthritis. Med J Aust. 1991
Oct 7;155(7):504. PubMed PMID: 1921836.
152
Pelkonen PM. Impact of arthritis and its consequences on the psychosocial
development of adolescents. Rev Rhum Engl Ed. 1997 Oct 15;64(10 Suppl):191S-193S.
Review. PubMed PMID: 9385679.
153
Jayde V, Boughton M. 'Living the tightrope': The experience of maternal
ovarian cancer for adult children in Australia. Eur J Oncol Nurs. 2015 Aug 31.
pii: S1462-3889(15)30020-X. doi: 10.1016/j.ejon.2015.08.004. [Epub ahead of
print] PubMed PMID: 26338436.
154
Sanderson T, Calnan M, Kumar K. The moral experience of illness and its
impact on normalisation: Examples from narratives with Punjabi women living with
rheumatoid arthritis in the UK. Sociol Health Illn. 2015 Nov;37(8):1218-35. doi:
10.1111/1467-9566.12304. Epub 2015 Jul 3. PubMed PMID: 26139357.
155
Larson EA. Mothering: letting go of the past ideal and valuing the real. Am
J Occup Ther. 2000 May-Jun;54(3):249-51. PubMed PMID: 10842680.
156
Sibley BP. A year to remember: my mother's story. Am J Alzheimers Dis Other
Demen. 2004 Nov-Dec;19(6):381-2. PubMed PMID: 15633947.
157
Geiter AA. Portraits of my mother. J S C Med Assoc. 2006 Apr;102(3):84-5.
158
Carter M. The experiences of patients with rheumatoid arthritis admitted to
hospital focused on 5 interrelated themes. Evid Based Nurs. 2002 Apr;5(2):63.
159
ACKERMAN NW. Disturbances for mothering and criteria for treatment. Am J
Larissa Sauder
A:Po, kk
A:Po,kk
A:Po, keine
chron.k
A: Po, keine
Mütter
A: Po, keine
chron.k
A:Po,kk
A: Po, keine
Mütter
A:Po, keine
chron.k
A: Po, keine
chron.k
A: Po, keine
Mütter
A:Po, kk
A: Po, keine
kleinen Kinder
E
A:Po, keine
chron.k
A: Fokus Kinder
A: Po, keine
chron.k
A: Po, keine
Mütter
A:Po, keine
chron.k
80
Orthopsychiatry. 1956 Apr;26(2):252-63. PubMed PMID: 13313694.
160
Peterson WE. Mothering served as a narrative backbone that supported a
meaningful, well developed life in some teenage mothers. Evid Based Nurs. 2006
Oct;9(4):124. PubMed PMID: 17076024.
161
SCHEELE LA. Arthritis as a public health problem. J Natl Assoc Chirop. 1951
Aug;41(8):34-40. PubMed PMID: 14861641.
162
BRIEN FS. Arthritis; its treatment in the home. Can Med Assoc J. 1949
Dec;61(6):583-6. PubMed PMID: 15406867; PubMed Central PMCID: PMC1591705.
163
Curtis P. The Problem Of "Best Care" For Arthritis. J Clin Rheumatol. 1995
Oct;1(5):308. PubMed PMID: 19078005.
Eingeschlossene Titel -> Abstract 163<19<12
1/154
The moral experience of illness and ist impact on normalisation: Examples from narratives
with Punjabi women living with rheumatoid arthritis in the UK
Sanderson T, Calnan M, Kumar K.
The moral component of living with illness has been neglected in analyses of long-term
illness experiences. This article attempts to fill this gap by exploring the role of the moral
experience of illness in mediating the ability of those living with a long-term condition (LTC) to
normalise. This is explored through an empirical study of women of Punjabi origin living with
rheumatoid arthritis (RA) in the UK. Sixteen informants were recruited through three hospitals
in UK cities and interviews conducted and analysed using a grounded theory approach. The
intersection between moral experience and normalisation, within the broader context of
ethnic, gender and socioeconomic influences, was evident in the following: disruption of a
core lived value (the centrality of family duty), beliefs about illness causation affecting
informants' 'moral career', and perceived discrimination in the workplace. The data illustrate
the importance of considering an ethnic community's specific values and beliefs when
understanding differences in adapting to LTCs and changing identities
2/110
Dealing with chronic pain: giving voice to the experiences of mothers with chronic pain and
their children.
Evans S, de Souza L.
Despite the substantial monetary, personal, and social cost of chronic pain, research into the
family life of sufferers is wanting. Parents dealing with chronic pain, as well as their children,
have been particularly neglected. Using qualitative interview data from 16 mothers suffering
from a variety of chronic pain conditions, and their 21 children, aged 6 to 12 years, we
explored the impact of maternal chronic pain on mothers and children. Consistent with a
gains-and-loss theory and the strengths perspective, the findings revealed both positive and
challenging aspects of pain. Despite the presence of risks--including maternal stress,
parenting difficulties, and children's distress--maternal chronic pain also provided
opportunities for growth in many families. The findings suggest that maternal chronic pain
can catalyze enhanced development as well as adversity. Researchers and clinicians should
be aware of the pitfalls facing families dealing with chronic pain, while remaining open to the
possibility that some families might flourish
3/85
Social implications of rheumatoid arthritis in young mothers.
Chamberlain MA.
A brief survey of the difficulties facing a mother of pre-school children has been made. The
time from 1 to 2 1/2 years is probably most demanding of the mother's patience and energy.
Much can be done to support the family by adequate control of the disease, splinting and
sparing of involved joints and provision of an easily maintained home, children's clothes and
attention to environmental design. Domestic help, education of the husband, playgroup for
the child and correct family spacing are all helpful.
4/74
Quality of life and impact of the disease on primary caregivers of juvenile idiopathic arthritis
patients.
Bruns A, Hil√°rio MO, Jennings F, Silva CA, Natour J.
OBJECTIVES:To evaluate the quality of life and the disease burden on primary caregivers of
patients with juvenile idiopathic arthritis (JIA).
METHODS:Seventy patients with JIA and their respective caregivers were enrolled in this
study. Health, quality of life and psychological status were assessed by using the childhood
health assessment questionnaire (CHAQ), the medical outcomes study 36-item short-form
health survey (SF-36) and the psychiatric screening questionnaire (SRQ-20). Burden of
disease on the caregivers was measured by the caregiver burden scale (CB Scale).
Larissa Sauder
A: Po, keine
chron.k
A: Po, keine
Mütter
A: Po, keine
Mütter
A: Po, keine
Mütter
Bemerkung
A:Po, keine
Mütter
E
A: Fachartikel
A:Po, keine
Mütter
81
RESULTS:Most caregivers were women (91.4%), married (76.6%), mothers (92.2%) and
their average age was 37.2+/-8.8 years. Low education and socioeconomic state were
observed in most of the caregivers. Psychoemotional disorders measured by the SRQ-20
were detected in 34.3% of the caregivers. Pain and mental health were the items in the SF36 questionnaire most affected in these individuals. Mean score of global burden measured
by the CB Scale was 1.6+/-0.3 (disappointment and environment had the lowest scores). The
CB Scale was significantly correlated with the SRQ-20 (r=0.6), number of limited joints
(r=0.3), number of visits (r=0.2), family income (r=-0.3) and mental health (r=-0.6), emotional
aspects (r=-0.4), social aspects (r=-0.4), vitality (r=-0.5) and general health state of the SF-36
(r=-0.4). SRQ-20 was the most important determinant of CB Scale and of the components
pain and mental health of the SF-36 questionnaire.
CONCLUSIONS: Most of the disease burden on the caregivers depends upon emotional
aspects rather than on the physical status of the patients.
5/70
Narratives by Japanese mothers with chronic mental illness in the Tokyo metropolitan area:
their feelings toward their children and perceptions of their children's feelings.
Ueno R, Kamibeppu K.
Women with mental illness generally have normal fertility rates. Mothers with mental illness
think that their children are important for their lives but also experience difficulties in relating
to their children. Therefore, it is important to understand the mothers' perception of what
experiences influence them or their parenting practices in relationships with their children.
We conducted narrative interviews with 20 Japanese mothers who were being treated for
either schizophrenia or mood disorders. The data were analyzed using the Modified
Grounded Theory Approach. For the mothers, their feelings toward their children and their
perception of their children's feelings toward them or their illness influenced the mothers and
their parenting practices. Implications for support are discussed and directions for future
research are presented.
6/66
Being a parent or grandparent with back pain, ankylosing spondylitis or rheumatoid arthritis: a
descriptive postal survey.
Grant MI, Foster NE, Wright CC, Barlow JH, Cullen LA.
Research that explores being a parent or grandparent with musculoskeletal problems has
been fairly limited to date. The aim of this study was to describe the experience of parenting
in the context of back pain (BP), ankylosing spondylitis (AS) and rheumatoid arthritis (RA),
with a particular focus on the extent and nature of childcare experiences and to compare
these experiences across the three groups. In addition, the possible reasons for these
reported experiences, the availability of advice and support and the development of
strategies for coping were explored using a cross-sectional descriptive survey. A total of 448
participants was recruited from relevant charitable organizations and the National Health
Service (280 with BP, 106 with AS and 62 with RA). A combination of opportunistic and
random sampling was used. Quantitative data were analysed with appropriate descriptive
and inferential statistics using Statistical Package for the Social Sciences (SPSS version 10).
Qualitative data were analysed using content analysis. Results indicate that a high proportion
of all groups experienced a wide range of difficulties with parenting (81% BP, 77% AS, 97%
RA). The most prevalent problems were similar for all three groups: lifting baby/child from the
floor or cot, encouraging children/grandchildren to help with domestic chores and keeping up
(in terms of energy) with children/grandchildren. However, the RA group reported having
greater difficulties than the other two groups. Very little advice was offered to participants with
parenting difficulties which may indicate a gap in service provision. However, a wide range of
strategies for coping were described by respondents. The study highlighted a need for
healthcare professionals to develop a greater awareness of parenting issues and to provide
opportunities for these issues to be addressed.
7/53
Mothers with chronic disease: a comparison of parenting in mothers with systemic sclerosis
and systemic lupus erythematosus.
Poole JL, Hare KS, Turner-Montez S, Mendelson C, Skipper B.
This study compared parenting ability in mothers with systemic sclerosis (SSc) and systemic
lupus erythematosus (SLE), two chronic, autoimmune, connective tissue diseases that
primarily affect women. Seventy-four mothers with SSc and 68 mothers with SLE completed
self-report questionnaires on demographic characteristics, pain, fatigue, occupational
performance, and parenting. Results showed that mothers with SSc were slightly older, were
more educated, and had decreased occupational performance. Mothers with SLE had more
pain and fatigue. There were no significant differences between mothers with SSc and SLE
who had children 5 years of age and younger. However, there were significant differences
between the mothers with SSc and SLE who had children aged 6 to 18 years on four items
on the Parenting Disability Index: playing games with child, getting up with child during the
night, keeping child out of unsafe situations, and helping child solve personal/social
problems. These differences may be due to differences in the levels of pain, fatigue, and
Larissa Sauder
E
E
Mix-method
Studie
E
D
82
occupational performance, possibly stemming from differences in disease manifestations.
8/49
Farber RS. Mothers with disabilities: in their own voice
OBJECTIVES: The purpose of this study was to gain an understanding of the personal
experience of women with disabilities engaged in the occupation of mothering and their
perceptions of their interpersonal environment, including interaction with family, professional
caregivers, and the community.
METHOD:In this qualitative study, in-depth interviews were conducted with a diverse sample
(n = 8) of mothers with disabilities or chronic illnesses to uncover the nature of their
mothering experience. Data were analyzed for themes with the constant comparison
approach of grounded theory.
RESULTS: The quality of the participants' experience varied with the degree of perceived
similarity or dissimilarity with other mothers and acceptance of these differences. In addition,
their perception of the supportive or nonsupportive nature of their interpersonal environment
had an impact on their mothering experience.
CONCLUSION: The results suggest that mothers with disabilities tend to value the
importance of performing maternal occupations according to a perceived culturally common
way, although self-acceptance of their own unique differences in performing these
occupations facilitates maternal engagement as well.
9/46
Ostensen M, Rugelsjoen A. Problem areas of the rheumatic mother.
The extent to which women with rheumatic diseases are disabled in caring for their children
is unknown. Fifty-seven women with rheumatoid arthritis, juvenile rheumatoid arthritis,
ankylosing spondylitis, psoriatic arthritis, or systemic lupus erythematosus, all of whom had
children under 6 years of age born during the disease, were interviewed. Patients with
different diseases differed in their disabilities, but lifting, carrying, transporting, and bathing
the child were difficult for most patients. Attention to these problem areas is necessary in the
care of young mothers with rheumatic illness
10/47
Meade T, Sharpe L, Hallab L, Aspanell D, Manolios N. Navigating motherhood
choices in the context of rheumatoid arthritis: women's stories.
OBJECTIVE: Planning a family is a complex decision. For women with chronic conditions
such as rheumatoid arthritis (RA), there are additional concerns about their own and their
baby's health. This qualitative study examined women's experiences of negotiating their
family decisions in the context of RA.
METHODS: A qualitative study was conducted in 14 women who provided a written account
of their motherhood decisions and experiences. Those 'stories' were then thematically
analysed.
RESULTS: RA was found to affect women's motherhood decisions and experiences. Three
key themes were identified for both the process of decision making and the experience of
that decision: capacity, uncertainty and acceptance. Only two of the women decided not to
have children, while for others the decision centred on changing expectations from the
number of children they planned to have, to parenting within the restrictions of their physical
abilities.
CONCLUSION: While many women struggled through the negotiations of their motherhood
choices, those who chose to have children reported great joy in that experience. The
challenges faced by women with RA contemplating motherhood, however, highlight the need
for understanding and support from health professionals and the provision of resources so
that women can make informed choices.
11/31
Francis-Connolly E. Toward an understanding of mothering: a comparison of two
motherhood stages.
OBJECTIVE:This study sought to understand the tasks and activities involved in the caring
and nurturing work of mothering, a common and important occupation for many women.
METHOD: In-depth, semistructured individual interviews were conducted with 40 mothers: 20
mothers of preschool-age children and 20 mothers of young adults. In addition, participants
completed a questionnaire describing the tasks and activities that they currently engage in
when caring for their children.
RESULTS: The activities involved in mothering are different for the mothers at the two stages
of mothering examined. The mothers of preschool-age children are very involved in
caretaking tasks and meeting the basic needs of the child, whereas the mothers of young
adults are involved in emotional and supportive type activities. Mothers at both stages are
involved in caring and nurturing work but this work evolves and changes as children mature.
CONCLUSION: These findings extend our awareness of mothering and the tasks and
activities involved in the occupation of mothering at both the preschool stage and young-adult
stage
12/22
Larissa Sauder
E
D
E
A: Po, keine
Mütter
A:Po, keine
chron.k
A: Po, nicht
83
Fenwick J, Barclay L, Schmied V. Craving closeness: a grounded theory
analysis of women's experiences of mothering in the Special Care Nursery.
AIM: The aim of the study was to increase knowledge and understanding of how women
begin their roles as mothers when their infant is in the neonatal nursery.
BACKGROUND: Research is limited into how women experience mothering in contexts such
as the neonatal nursery. Consequently many nurses and midwives remain inadequately
informed of parents' experiences which we know may have long-term family outcomes.
METHOD: This paper presents the overarching synthesis of a grounded theory analysis of
data collected from 28 Australian women whose infants were in Special Care Nurseries. It
draws together a number of previous publications that have described in detail the categories
derived from the analysis that explain the actions, interactions and reactions women engage
in as they seek to 'connect' with their infant. Data collection consisted of two in-depth
interviews conducted with women, 333h of taped cot side recordings, field notes and
interview data collected from 20 nursery staff, 19 of whom were midwives.
FINDINGS: Six major categories were identified that, when combined, explained the intense
emotional, cognitive and worry 'work' women undertook with both their infants and the
nursery staff in an effort to learn how to mother in the nursery. Four explained how women
worked to get to know and connect with their infants. The first three were labelled 'just
existing', 'striving to be the baby's mother' and 'trying to establish competence'. The fourth,
'learning and playing the game', overlays the first three and represents the reality of having to
undertake these already difficult and unexpected activities of mothering in the nursery. Two
categories 'becoming connected' and 'struggling to mother' were identified as the
consequences of women's actions and interactions. A significant finding of the study was the
impact of the interactions between nurses and mothers' mothering. The nurse-mother
relationship had the potential to significantly affect how women perceived their connection to
the infant and their confidence in caring for their infant which occurred through a three way
interaction.
CONCLUSIONS:
It becomes clear that the intense work women undertake as mothers in the nursery is
focused on not only the infant, which might have been expected, but also the nursery staff. It
is driven by their desire to develop or re-establish some sense of competence in the eyes of
the nurse and to achieve control over the situation. Achieving physical closeness with the
baby was a major strategy through which women not only learned about and gained intimate
knowledge of their infant, but also demonstrated authority and ownership. It appears that
reorientating the delivery of services from the infant to the mother-infant dyad would improve
the care women and families receive during their nursery experience
13/20
Stamm T, Lovelock L, Stew G, Nell V, Smolen J, Jonsson H, Sadlo G, Machold K.
I have mastered the challenge of living with a chronic disease: life stories of
people with rheumatoid arthritis.
Our aim with this study was to explore the narrative life story of individuals diagnosed with
rheumatoid arthritis. An open qualitative approach, namely narrative biographic methodology,
was applied to include the life context of the participants and to deliberately exclude
predefinitions of concepts. Ten people with rheumatoid arthritis who retired early because of
the disease participated and were interviewed three times according to a narrative biographic
interview style. The biographical data and the interview texts were analyzed both individually
and in comparison to each other. Some participants regarded rheumatoid arthritis as a
challenge for mastery in their lives, whereas others adapted to the disease and "made the
best out of a bad situation." Especially in countries where the medical model predominates in
health care, our findings can be used to broaden the current view that some health
professionals have toward patients, and stress the importance of patients being selfresponsible.
14/8
Poole JL, Rymek-Gmytrasiewicz M, Mendelson C, Sanders M, Skipper B. Parenting:
the forgotten role of women living with systemic lupus erythematosus.
This study investigates parenting and the impact of symptoms, such as pain and fatigue, on
the parenting abilities of mothers with systemic lupus erythematosus (SLE). Participants were
68 mothers with SLE who had children 18 years of age and younger. The mothers completed
surveys consisting of a demographic questionnaire and self-report instruments such as the
Parenting Disability Index (PDI), Health Assessment Questionnaire, Pain Visual Analog
Scale, and Multidimensional Assessment of Fatigue Scale. Analysis of variance was used to
compare parenting abilities for women with younger children (birth -5 years) and women with
older children (6-18 years) and women with children in both age groups. There were no
significant differences between the three groups. However, having more fatigue, functional
disability, and less education resulted in higher PDI scores in all groups. Mothers with
children younger than age 5 reported that having energy to talk/listen to a child was the most
difficult parenting task. Mothers with children between 6 and 18 years of age reported the
most difficulties with maintaining discipline, playing games, shopping, and doing household
Larissa Sauder
chron.k
A: Po, keine
Mütter
E
84
chores. Symptoms of lupus have a significant influence on mothering roles. In daily practice,
health care providers may want to consider inquiring about the impact SLE may be having on
their patients' parenting roles.
15/9
Mitton DL, Treharne GJ, Hale ED, Williams RA, Kitas GD. The health and life
experiences of mothers with rheumatoid arthritis: a phenomenological study.
In our varied roles as health care professionals and researchers, many women with
rheumatoid arthritis (RA) have commented to us about their feelings of inability to cope with
everyday tasks, especially within their role as mothers.
AIMS:This study explored the health and life experiences of mothers with RA in order to
increase knowledge about this group of women and inform health care professionals who
provide them with support before and after becoming a mother.
METHODS:A phenomenological approach was adopted, and individual face-to-face semistructured interviews were carried out with a sample of seven women, aged 21-41 years, who
had lived with RA for 3-11 years and had one or more children under five years of age (total
range of ages being 1-7 years). The data were analysed using Colaizzi's procedural steps.
RESULTS:The five major themes that emerged were inner strength, depression, labelling,
failure, and pre- and post-natal education. Sub-themes included issues such as putting on a
brave face, spirituality, guilt, burden, feeling 'robbed of motherhood', isolation, coping
methods and lack of information.
CONCLUSIONS:This in-depth study informs health care professionals for their role as
support provider for mothers with RA. Further research needs to be carried out to include
multicultural experiences, which may or may not differ. As a step forward, we have
implemented a local support group for mothers with RA, which will hopefully add benefit to
existing rheumatology, midwifery and health visiting services.
16/5
Barlow JH, Cullen LA, Foster NE, Harrison K, Wade M. Does arthritis influence
perceived ability to fulfill a parenting role? Perceptions of mothers, fathers
and grandparents.
The presence of a painful, disabling chronic disease may have implications for perceived
ability to fulfill a parenting role. The purpose of this research was to examine the realities of
parenting from the perspectives of mothers, fathers and grandparents with arthritis using a
combination of methods: a cross sectional survey and in-depth focus group discussions.
There was consensus that pain, fatigue and restricted physical functioning combined to
interfere with the parenting role. Overall, approximately 35% of the sample had experienced
difficulties attributed to arthritis. A gender difference emerged with women reporting more
difficulties in relation to caring for babies and toddlers, whereas men reported more problems
as children grew older. Key themes concerned: physical limitations; practical and caring
issues; social factors; emotional response; hereditary risks and safety issues. Perceived
inability to fulfill parenting roles resulted in feelings of frustration, guilt, anger and depression.
A number of positive outcomes were mentioned including children's increased awareness of
the needs of others. Limitations of the methodological approach adopted are discussed.
17/6
White CP, Mendoza J, White MB, Bond C. Chronically ill mothers experiencing
pain: relational coping strategies used while parenting young children
For women with an autoimmune illness, fatigue can be a debilitating symptom that impacts
many aspects of their life. There is scant research on maternal fatigue and its impact on the
caregiving environment for either well women or women with chronic illnesses. The objective
of this study was to examine the role maternal fatigue played in the caregiving environment,
specifically in the mother's experience of the daily hassles of parenting, the discipline style
she employed, and how she monitored her child's whereabouts. Two-hundred sixty-two
mothers participated in this study: 103 mothers with multiple sclerosis (MS), 68 mothers with
rheumatoid arthritis (RA), and a comparison group of 91 well mothers. Mothers completed
questionnaires assessing their self-reported levels of fatigue, depression, quality and quantity
of sleep, parenting daily hassles, discipline styles, and monitoring. After sleep, depression,
and number of children were controlled for, fatigue explained additional variance in predicting
monitoring for all three groups of mothers. Fatigue was also a significant predictor of
parenting daily hassles for both well mothers and mothers with RA, but not for mothers with
MS. For mothers with MS, it was the covariates (i.e., the number of children in the family and
sleep quality and quantity) that were predictive of parenting daily hassles. Several
explanations for mothers with MS not being as influenced by fatigue are discussed.
18/7
White CP, White MB, Fox MA. Maternal fatigue and its relationship to the
caregiving environment.
There has been little research on women who are parenting while they experience pain and
none of this research has focused on mothers with young children. The purpose of this study
was to consider relational coping strategies generated by mothers that they used when
parenting young children and experiencing pain.
Larissa Sauder
E
E
E
D
E
Quantitative
Studie
85
METHODS:Two-hundred sixty-two mothers participated in this survey research; 171 who
have either multiple sclerosis (MS) or rheumatoid arthritis (RA), and a comparison group of
91well mothers. Mothers completed questionnaires inquiring about (a) their coping strategies,
(b) levels of pain, fatigue and physical functioning, and (c) if they were currently experiencing
an exacerbation of their chronic illness.
RESULTS:Well mothers reported using more self-care when parenting while experiencing
pain. Mothers with RA were more likely to set boundaries around their behaviour. Women
with MS who were experiencing an exacerbation changed their coping strategies to include
more child activities and encourage more mature child behaviour when compared to women
with RA who were experiencing an exacerbation.
DISCUSSION:From the perspective of relational coping theory, mothers consider their own
pain while simultaneously attending to their responsibilities as a parent. Previous research
has suggested that women may withdraw or reduce their parenting activities when they are in
pain and this study supported the previous research, especially for women with RA.
19/1
Backman CL, Smith Ldel F, Smith S, Montie PL, Suto M. Experiences of mothers
living with inflammatory arthritis
METHODS: A qualitative, grounded theory design guided data collection and analysis. Indepth interviews were conducted with a purposive sample of 12 women with either
analyzed using a systematic approach of coding and forming concepts and key categories to
construct an explanatory framework. Peer checking and member checking enhanced
analytical rigor.
RESULTS: Analysis of participants' experiences resulted in 4 interrelated categories
best described as "sometimes I can, sometimes I can't"; different types and levels of support
from others; the influence of the mother's arthritis on the family; and the challenge of
balancing energy and fatigue. Individuals' arthritis story, life stage, their children's
developmental stage, and daily routine described the context in which mothers experienced
elements of each of the 4 main categories.
CONCLUSION:Inflammatory arthritis has a dramatic impact on the experience of
motherhood, with both positive and negative influences. The perspectives shared by study
participants may inform practice regarding problem identification and adaptive strategies, and
the explanatory model generated from the data proposes hypotheses for further study.
151202_Search_P_4
Results: 1-32 of 32
1
Tong A, Brown MA, Winkelmayer WC, Craig JC, Jesudason S. Perspectives on Pregnancy
in Women With CKD: A Semistructured Interview Study. Am J Kidney Dis.
2015 Dec;66(6):951-61. doi: 10.1053/j.ajkd.2015.08.023. Epub 2015 Oct 6.
2
Korkalo L, Freese R, Alfthan G, Fidalgo L, Mutanen M. Poor micronutrient intake and
status is a public health problem among adolescent Mozambican girls.
Nutr Res. 2015 Aug;35(8):664-73. doi: 10.1016/j.nutres.2015.05.013. Epub 2015 May
3
Ullrich G, Bobis I, Bewig B. Parenting stress in mothers with cystic fibrosis.
Disabil Rehabil. 2016 Jan;38(2):174-9. doi: 10.3109/09638288.2015.1031290. Epub 2015
Apr
4
Tong A, Jesudason S, Craig JC, Winkelmayer WC. Perspectives on pregnancy in women
with chronic kidney disease: systematic review of qualitative studies.
Nephrol Dial Transplant. 2015 Apr;30(4):652-61. doi: 10.1093/ndt/gfu378. Epub 2014 Dec
18.
5
Lopez LF, Martinez CJ, Castaeda DA, Hernndez AC, Pérez HC, Lozano E.
Pregnancy and kidney transplantation, triple hazard? Current concepts and algorithm for
approach of preconception and perinatal care of the patient with kidney transplantation.
Transplant Proc. 2014 Nov;46(9):3027-31. doi: 10.1016/j.transproceed.2014.07.013.
6
Wadd KM, Bennett PN, Grant J. Mothers requiring dialysis: parenting and end-stage
kidney disease. J Ren Care. 2014 Jun;40(2):140-6. doi:10.1111/jorc.12066. Epub 2014
Mar 26.
7
Bottorff JL, Poole N, Kelly MT, Greaves L, Marcellus L, Jung M. Tobacco and alcohol use
Larissa Sauder
E
D
Bemerkung
A: Po, keine
Mütter
Schwangere
A: Po, keine
Mütter
E
A: Po, keine
Mütter
Schwangere
A: Po, keine
Mütter
Schwangere
E
A: Po, keine
Mütter
86
in the context of adolescent pregnancy and postpartum: a scoping review of the literature.
Health Soc Care Community. 2014 Nov;22(6):561-74. doi: 10.1111/hsc.12091. Epub 2014
Jan 10.
8
Miralles C, Mardarescu M, Sherr L. What do we know about the situation of women living
with HIV in Europe? Antivir Ther. 2013;18 Suppl 2:11-7. doi:0.3851/IMP2646. Epub 2013
Jun 19.
9
Schechter MS, Quittner AL, Konstan MW, Millar SJ, Pasta DJ, McMullen A; Scientific
Advisory Group; Investigators and Coordinators of Epidemiologic Study of Cystic Fibrosis.
Long-term effects of pregnancy and motherhood on disease outcomes of women with
cystic fibrosis. Ann Am Thorac Soc. 2013 Jun;10(3):213-9. doi:
10.1513/AnnalsATS.201211-108OC.
10
Robbins M. The successful psychoanalytic therapy of a schizophrenic woman.
Psychodyn Psychiatry. 2012 Dec;40(4):575-608. doi: 10.1521/pdps.2012.40.4.575
11
Hardee K, Gay J, Blanc AK. Maternal morbidity: neglected dimension of safe
motherhood in the developing world. Glob Public Health. 2012;7(6):603-17. doi:
10.1080/17441692.2012.668919. Epub 2012 Mar 16. PubMed PMID: 22424546;
12
Pawluski JL, Charlier TD, Fillet M, Houbart V, Crispin HT, Steinbusch HW, van den Hove
DL. Chronic fluoxetine treatment and maternal adversity differentially alter neurobehavioral
outcomes in the rat dam. Behav Brain Res. 2012 Mar1;228(1):159-68. doi:
10.1016/j.bbr.2011.11.043. Epub 2011 Dec 6.
13
Moola FJ, Norman ME. 'Down the rabbit hole': enhancing the transition processfor youth
with cystic fibrosis and congenital heart disease by re-imagining the future and time. Child
Care Health Dev. 2011 Nov;37(6):841-51. doi:10.1111/j.1365-2214.2011.01317.x.
14
Brown-Bryant R, Brumbaugh K. A perspective on CDC's efforts in safe
motherhood: 2001 to the present. J Womens Health (Larchmt). 2010 May;19(5):833-6.
doi: 10.1089/jwh.2010.2049.
15
Ahluwalia IB, Robinson D, Vallely L, Gieseker KE, Kabakama A. Sustainability of
community-capacity to promote safer motherhood in northwestern Tanzania: what
remains? Glob Health Promot. 2010 Mar;17(1):39-49. doi: 10.1177/1757975909356627.
16
Schytt E, Waldenstrom U, Olsson P. Self-rated health--what does it capture at 1 year after
childbirth? Investigation of a survey question employing thinkaloud interviews. Scand J
Caring Sci. 2009 Dec;23(4):711-20. doi: 10.1111/j.1471-6712.2008.00669.x. Epub 2009
Oct 4. PubMed
17
Nattabi B, Li J, Thompson SC, Orach CG, Earnest J. A systematic review of factors
influencing fertility desires and intentions among people living with HIV/AIDS: implications
for policy and service delivery. AIDS Behav. 2009 Oct;13(5):949-68. doi: 10.1007/s10461009-9537-y. Epub
18
Stapleton H, Fielder A, Kirkham M. Managing infant feeding practices: the competing
needs of bulimic mothers and their children. J Clin Nurs. 2009 Mar;18(6):874-83. doi:
10.1111/j.1365-2702.2008.02528.x.
19
Nacinovich R, Galli J, Bomba M, Filippini E, Parrinello G, Nuzzo M, Lojacono A, Motta M,
Tincani A. Neuropsychological development of children born to patients with
antiphospholipid syndrome. Arthritis Rheum. 2008 Mar 15;59(3):345-51. doi:
10.1002/art.23311.
20
Brown GW, Craig TK, Harris TO, Handley RV. Parental maltreatment and adulthood
cohabiting partnerships: a life-course study of adult chronic depression--4. J Affect Disord.
2008 Sep;110(1-2):115-25. doi: 10.1016/j.jad.2008.01.015. Epub 2008 Mar 4.
21
Twork S, Wirtz M, Schipper S, Klewer J, Bergmann A, Kugler J. Chronical Illness and
maternity: life conditions, quality of life and coping in women with multiple sclerosis. Qual
Life Res. 2007 Dec;16(10):1587-94. Epub 2007 Oct 5.
22
Killewo J, Anwar I, Bashir I, Yunus M, Chakraborty J. Perceived delay in healthcareseeking for episodes of serious illness and its implications for safe motherhood
interventions in rural Bangladesh. J Health Popul Nutr. 2006 Dec;24(4):403-12.
Larissa Sauder
Schwangere
A: Po, keine
Mütter
E
A: Po, keine
Mütter
A: Po, nicht
chon.k
A: Ph, ne
A: Po, kk
E
A: Po, nicht
chron.k
A: Po, nicht
chron.k
A: Po, keine
Mütter
A: Po, ne
A: Po, Fokus
Kinder
A: Po, keine
Mütter
E
A: Ph, ne
87
23
Wilson S. 'When you have children, you're obliged to live': motherhood, chronic illness and
biographical disruption. Sociol Health Illn. 2007 May;29(4):610-26.
24
Backman CL, Smith Ldel F, Smith S, Montie PL, Suto M. Experiences of mothers living
with inflammatory arthritis. Arthritis Rheum. 2007 Apr 15;57(3):381-8.
25
Sandelowski M, Barroso J. Motherhood in the context of maternal HIV infection. Res Nurs
Health. 2003 Dec;26(6):470-82
26
Ahluwalia IB, Schmid T, Kouletio M, Kanenda O. An evaluation of a community-based
approach to safe motherhood in northwestern Tanzania. Int J Gynaecol Obstet. 2003
Aug;82(2):231-40.
27
Marks JS. Safe motherhood: values, purpose, and possibility. Matern Child Health J. 2002
Dec;6(4):269-71.
28
Wilcox LS. Pregnancy and women's lives in the twenty-first century: theUnited States Safe
Motherhood movement. Matern Child Health J. 2002Dec;6(4):215-9. PubMed PMID:
12512762.
29
Young B, Dixon-Woods M, Findlay M, Heney D. Parenting in a crisis: conceptualising
mothers of children with cancer. Soc Sci Med. 2002 Nov;55(10):1835-47.
30
Omeragic F. Bosnia-Herzegovina: a case study in service collapse. Safe motherhood.
Entre Nous Cph Den. 1998 Spring;(38):12. PubMed PMID: 12222291. 31: Finger WR.
Maternal morbidities affect tens of millions. Netw Res TrianglePark N C. 1994 Feb;14(3):811.
31
Finger WR. Maternal morbidities affect tens of millions. Netw Res Triangle Park N C. 1994
Feb;14(3):8-11
32
Alvin P, Muller J, Houssin D, Pras-Jude N, Chapuis Y, Courtecuisse V. [Pregnancy and
motherhood after liver transplantation in terminal autoimmune active hepatitis with primary
amenorrhea]. Gastroenterol Clin Biol. 1989 Dec;13(12):1079-81. French.
E
1/32
Alvin P, Muller J, Houssin D, Pras-Jude N, Chapuis Y, Courtecuisse V. [Pregnancy and
motherhood after liver transplantation in terminal autoimmune active hepatitis with primary
amenorrhea]. Gastroenterol Clin Biol. 1989 Dec;13(12):1079-81. French.
We report the case of a young patient with end-stage auto-immune chronic active hepatitis
and primary amenorrhea who became pregnant 18 months after orthotopic liver
transplantation. She continued an uncomplicated pregnancy on treatment with ciclosporin A
and spontaneously gave birth to a full term and healthy child
2/31
Finger WR. Maternal morbidities affect tens of millions. Netw Res Triangle Park N C. 1994
Feb;14(3):8-11
No abstract
3/23
Wilson S. 'When you have children, you're obliged to live': motherhood, chronic illness and
biographical disruption. Sociol Health Illn. 2007 May;29(4):610-26.
identity, in this instance HIV infection and motherhood. It is argued that, viewed in this light,
biographical disruption remains a powerful analytic framework with which to explore the
intense threat which may be posed to key identities by chronic, potentially fatal illnesses,
and the fundamental re-working of such identities occasioned by such threats. With
reference to the empirical study on which this paper draws, it is shown that the twelve
respondents' emphasis on their need to survive and to protect their children, represented a
analysis problematizes work that suggests that biographical disruption is less relevant to
account of gender and caring responsibilities in further work in this field.
4/24
Bemerkung
A: Q?
Case Study
Larissa Sauder
E
E
A: Po, nicht
chron.k
A: Po, nicht
chron.k
A: Po, nicht
chron.k
A: Po, kk
A: Po, nicht
chron.k
E
E
A?
E
D
E
88
Backman CL, Smith Ldel F, Smith S, Montie PL, Suto M. Experiences of mothers living with
inflammatory arthritis. Arthritis Rheum. 2007 Apr 15;57(3):381-8.
METHODS:A qualitative, grounded theory design guided data collection and analysis. Indepth interviews were conducted with a purposive sample of 12 women with either
analyzed using a systematic approach of coding and forming concepts and key categories
to construct an explanatory framework. Peer checking and member checking enhanced
analytical rigor.
RESULTS:Analysis of participants' experiences resulted in 4 interrelated categories
best described as "sometimes I can, sometimes I can't"; different types and levels of
support from others; the influence of the mother's arthritis on the family; and the challenge
of balancing energy and fatigue. Individuals' arthritis story, life stage, their children's
developmental stage, and daily routine described the context in which mothers experienced
elements of each of the 4 main categories.
CONCLUSION:Inflammatory arthritis has a dramatic impact on the experience
of motherhood, with both positive and negative influences. The perspectives shared by
study participants may inform practice regarding problem identification and adaptive
strategies, and the explanatory model generated from the data proposes hypotheses for
further study
5/25
Sandelowski M, Barroso J. Motherhood in the context of maternal HIV infection. Res Nurs
Health. 2003 Dec;26(6):470-82
Metasummary and metasynthesis techniques were used to integrate findings pertaining
to motherhood in 56 reports of qualitative studies conducted with HIV-positive
women. Motherhood in the context of maternal HIV infection entailed work directed toward
the illness itself and the social consequences of having HIV infection in the service of two
primary goals: the protection of children from HIV infection and HIV-related stigma and the
distinctive kind of maternal practice-virtual motherhood-to resist forces that disrupted their
relationships with and ability to care for their children, as well as their identities as mothers.
6/21
Twork S, Wirtz M, Schipper S, Klewer J, Bergmann A, Kugler J. Chronical Illness and
maternity: life conditions, quality of life and coping in women with multiple sclerosis. Qual
Life Res. 2007 Dec;16(10):1587-94. Epub 2007 Oct 5.
AIM:Research on life circumstances, quality of life (QOL) and coping behavior in mothers
with multiple sclerosis (MS).
METHOD:Anonymous standardised questionnaire sent to 7,050 members of a section of
the German MS Association (response rate 44.8%). Comparison of 482 mothers with MS
(children aged < 18 years) with 607 childless women with MS.
RESULTS:No statistically significant differences concerning age, MS course, complaints or
number of exacerbations. Mothers with MS more frequently had a relationship, a higher
monthly net income, were less employed, EDSS-score was lower and disease duration
shorter. In QOL mothers with MS showed better social aspects even after multivariate
adjustment for sociodemographic and disease-related variables. Influencing parameters on
the social area of QOL were employment status, age, monthly household net income and
disability. In their coping behavior mothers tended more to "religiosity/search for sense in
life".
CONCLUSION:There were several differences in sociodemographic data, QOL and coping
behavior factors between mothers and childless women with MS. However,
if motherhood itself has an influence on QOL and coping can not be derived from our data
but there are some hints that motherhood seems to be no potential problem for living with
the disease. Further research upon this topic is needed.
7/14
Brown-Bryant R, Brumbaugh K. A perspective on CDC's efforts in safe
motherhood: 2001 to the present. J Womens Health (Larchmt). 2010 May;19(5):833-6.
doi: 10.1089/jwh.2010.2049.
This article reviews selected activities to promote Safe Motherhood through scientific and
programmatic activities conducted by CDC's Division of Reproductive Health.
8/9
Schechter MS, Quittner AL, Konstan MW, Millar SJ, Pasta DJ, McMullen A; Long-term
effects of pregnancy and motherhood on disease outcomes of women with cystic fibrosis.
Ann Am Thorac Soc. 2013 Jun;10(3):213-9. doi: 10.1513/AnnalsATS.201211-108OC.
RATIONALE:Studies of pregnancy in cystic fibrosis (CF) have shown no short-term harmful
Larissa Sauder
D
E
D
E
D
A: Ph, ne
A: Ph, ne
Fokus auf
Auswirkungen
Mutterschaft auf
Therapie
89
effects, but there are no long-term studies on the impact of motherhood.
OBJECTIVES:This study sought to evaluate longer-term physiologic and functional
outcomes in women with CF reporting a pregnancy, with the intent of assessing how the
demands of parenting impacted on disease course.
METHODS:Using 1994 to 2005 Epidemiologic Study of Cystic Fibrosis data, we developed
a propensity score to match women reporting a pregnancy at a 1:10 ratio with neverpregnant control subjects and compared clinical outcomes, health-related quality of life, and
health care use.
MEASUREMENTS AND MAIN RESULTS:One hundred nineteen pregnant women
presumed to have become mothers were matched with 1,190 control subjects, a median of
6.0 years (range 1.8-11.1 yr) from the pregnancy. No differences were found in annualized
change from baseline FEV1 and body mass index, in respiratory signs and symptoms, or in
prescribed chronic therapies. Women who had been pregnant were treated for more
pulmonary exacerbations and had more illness-related clinic visits but showed no increase
in prescribed chronictherapies. They also reported lower health-related quality-of-life scores
for Respiratory Symptoms, Physical Functioning, Vitality, and Health Perceptions.
CONCLUSIONS:Pregnancy and motherhood do not appear to
accelerate disease progression but lead to more illness-related visits, pulmonary
exacerbations, and a decrease in some domains of quality of life. These differences
presumably reflect the impact of the physical and emotional challenges of
early motherhood on disease self-management.
9/6
Wadd KM, Bennett PN, Grant J. Mothers requiring dialysis: parenting and end-stage kidney
disease. J Ren Care. 2014 Jun;40(2):140-6. doi:10.1111/jorc.12066. Epub 2014 Mar 26.
BACKGROUND:Mothers requiring dialysis to treat end-stage kidney disease face the
challenging demands of the disease and dialysis treatment in addition to their role as a
parent.
OBJECTIVE:To describe the experience of mothers who require haemodialysis.
METHODS:Four mothers receiving haemodialysis treatment for end-stage
kidney disease in regional Australia were interviewed to explore the mothers' experiences,
attitudes, beliefs and values of their dual role as mothers and haemodialysis recipients.
RESULTS:The overarching theme emerging from the data was the competing roles
of motherhood and dialysis. Four key sub-themes emerged: fitting everything in, internal
family challenges, lost connections and striving for normality.
CONCLUSION:Being a mother adds a range of complexities to being on dialysis. While
managing dialysis, mothers struggle to care for their children and stay connected with
family life. Nephrology health professionals are uniquely placed to support mothers and
need to develop strategies to ease their burdens of care.
10/3
Ullrich G, Bobis I, Bewig B. Parenting stress in mothers with cystic fibrosis.
Disabil Rehabil. 2016 Jan;38(2):174-9. doi: 10.3109/09638288.2015.1031290. Epub 2015
Apr
AIM:To assess the parenting experience of mothers with cystic fibrosis (CF) and to
compare with normative data.
METHODS:Cross-sectional study with a validated generic parental stress questionnaire
(PSQ). This PSQ differentiates four components of parental stress: main factor "parental
stress", compounding factor "role restrictions", protective factors "support from spouse",
and "social support". Cut-off scores categorise results as "normal", "borderline" or
"concerning".
SAMPLE:Seventy-three women were informed by their local CF centre. Of these, 36
enrolled and had a first-born child aged 1-12 years (consistent with reference values of the
PSQ). Of these, 31 (86%) returned the PSQ. Mean age of mothers was 32.6 years  ±  6.9
years, mean age of first-born child was 5.2 years  ±  3.4 years. Most of the mothers had one
biological child, five women had two children and one had three children.
RESULTS:Parental stress scores were normally distributed, the same applies for
contributing factors and for the two protective factors. Favourable scores were twice as
frequent as concerning scores. Mothers of younger children scored slightly better than
mothers of school-aged children.
CONCLUSION:In line with the only comparable study, mothers with CF seem to be a
remarkably resilient group who mostly cope well with parental stress even in the face of a
progressive, chronic disease requiring time-consuming treatment. Implications for
Rehabilitation Today,motherhood is increasingly becoming an option in fertile women with
cystic fibrosis. The additional burden of parenting seems to be rewarded by fulfilling
essential personal goals. CF clinics should routinely address a possible wish for a child and
to discuss it, openly
E
E
151128_Search_I_1
Search Results: 1-158 of 158
Larissa Sauder
Bemerkung
90
1
Brooks, Jada L, Beil, Heather & Beeber, Linda S. (2015). Maternal depressive symptoms
and healthcare expenditures for publicly insured children with chronic health
conditions. Maternal and Child Health Journal, 19, 790-797. doi:10.1007/s10995-014-15704
2
Dalal, Priti G. (2015). The need to treat maternal pain in the breastfeeding mother: Are
opioids safe? Pain Medicine, 16, 630-631. doi:10.1111/pme.12718_3
3
Farber, Ruth S, Kern, Margaret L & Brusilovsky, Eugene. (2015). Integrating the ICF with
positive psychology: Factors predicting role participation for mothers with multiple
sclerosis. Rehabilitation Psychology, 60, 169-178. doi:10.1037/rep0000023
4
Ferro, Mark A, Boyle, Michael H & Avison, William R. (2015). Association between
trajectories of maternal depression and subsequent psychological functioning in youth with
and without chronic physical illness. Health Psychology, 34, 820-828.
doi:10.1037/hea0000226
5
Horsch, Antje & McManus, Freda. (2014). Brief report: Maternal posttraumatic stress
symptoms are related to adherence to their child's diabetes treatment regimen. Journal of
Health Psychology, 19, 987-992. doi:10.1177/1359105313482169
6
Kang, Sarah J. (2015). Promoting the emotional development in healthy siblings of children
with chronic illnesses: A group intervention approach. Dissertation Abstracts International:
Section B: The Sciences and Engineering, 75(10-B(E)), No Pagination Specified. Retrieved
from
http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=psyc11&NEWS=N&AN=20
15-99080-141.
7
Limbo, Rana & Kobler, Kathie. (2014). Editorial. Illness, Crisis, & Loss, 22, 1-2.
doi:10.2190/IL.22.1.a
8
Malee, Kathleen M, Mellins, Claude A, Huo, Yanling, Tassiopoulos, Katherine, Smith,
Renee, Sirois, Patricia A, et al. (2014). Prevalence, incidence, and persistence of
psychiatric and substance use disorders among mothers living with HIV. JAIDS Journal of
Acquired Immune Deficiency Syndromes, 65, 526-534.
doi:10.1097/QAI.0000000000000070
9
Poole, Janet L, Hare, K. Sena, Turner-Montez, Sabrina, Mendelson, Cindy & Skipper,
Betty. (2014). Mothers with chronic disease: A comparison of parenting in mothers with
systemic sclerosis and systemic lupus erythematosus. OTJR: Occupation, Participation and
Health, 34(1), 12-19. Retrieved from
14-03583-003.
10
Schwartz, Lindsay F, Seidman, Laura C, Zeltzer, Lonnie K & Tsao, Jennie C. I. (2014). Pain
perception: Mother-child concordance for pain location. Merrick, Joav [Ed], Schofield,
Patricia [Ed], Morad, Mohammed [Ed]. Pain: International research in pain
management. Hauppauge, NY, US: Nova Biomedical Books, US; pp. 97-110. Retrieved
from
14-02122-010.
11
Beasant, Lucy, Mills, Nicola & Crawley, Esther. (2014). Adolescents and mothers value
referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy
(CFS/ME). Primary Health Care Research and Development, 15, 134-142.
doi:10.1017/S1463423613000121
12
Buchwald, Dorte, Delmar, Charlotte & Schantz-Laursen, Birgitte. (2012). How children
handle life when their mother or father is seriously ill and dying. Scandinavian Journal of
Caring Sciences, 26, 228-235. doi:10.1111/j.1471-6712.2011.00922.x
13
Chen, Yung-Chi & Fish, Marian C. (2013). Demands of maternal chronic illness and
children's educational functioning: An exploratory study. Child & Adolescent Social Work
Journal, 30, 257-274. doi:10.1007/s10560-012-0288-7
14
Chen, Yung-Chi & Fish, Marian C. (2013). Parental involvement of mothers with chronic
illness and children's academic achievement. Journal of Family Issues, 34, 583-606.
Larissa Sauder
A: Po, kk
A:Ph, wb
E
A:Ph, ne
A: Po, kk
A: Po, kk
E
A: ph ne
E
A: Ph, nicht
chronisch krank
A:Ph ne
A: nicht Fokus
Mutter
A: Ph ne
A: Ph ne
91
doi:10.1177/0192513X12444081
15
Crawley, Esther, Hughes, Rachael, Northstone, Kate, Tilling, Kate, Emond, Alan & Sterne,
Jonathan A. C. (2012). Chronic disabling fatigue at age 13 and association with family
adversity. Pediatrics, 130, e71-e79. doi:10.1542/peds.2011-2587
16
Goldblatt, Ilysa. (2012). How positive psychology may enhance mothers' adjustment to
chronically ill children: A support and prevention program. Dissertation Abstracts
International: Section B: The Sciences and Engineering, 72(10-B), 6384. Retrieved from
2-99080-212.
17
Goosby, Bridget J. (2013). Early life course pathways of adult depression and chronic
pain. Journal of Health and Social Behavior, 54, 75-91. doi:10.1177/0022146512475089
18
Nur, Saadah M. A, Siti, Hajar A. B & Islam, M. Rezaul. (2014). Coping strategies among
mothers of chronically ill children: A case study in Malaysia. Journal of Social Service
Research, 40, 160-177. doi:10.1080/01488376.2013.866613
19
Pikiewicz, Kristi Ann. (2014). I never knew i had expectations until i realized they weren't
going to come true: A grounded theory study of mothering a chronically ill child. Dissertation
Abstracts International: Section B: The Sciences and Engineering, 74(7-B(E)), No
Pagination Specified. Retrieved from
14-99020-080.
20
Ringlever, Linda, Otten, Roy, van Schayck, Onno C. P & Engels, Rutger C. M. E. (2012).
The role of maternal illness perceptions in perceived asthma symptoms in school-aged
children. Journal of Asthma, 49, 1030-1036. doi:10.3109/02770903.2012.726305
21
Aein, Fereshteh, Alhani, Fatemeh, Mohammadi, Eesa & Kazemnejad, Anoshirvan. (2011).
Struggling to create new boundaries: A grounded theory study of collaboration between
nurses and parents in the care process in Iran. Journal of Advanced Nursing, 67, 841-853.
doi:10.1111/j.1365-2648.2010.05515.x
22
Hechler, Tanja, Vervoort, Tine, Hamann, Maximiliane, Tietze, Anna-Lena, Vocks, Silja,
Goubert, Liesbet, et al. (2011). Parental catastrophizing about their child's chronic pain: Are
mothers and fathers different? European Journal of Pain, 15, e1-e9.
doi:10.1016/j.ejpain.2010.09.015
23
Kujawa, Autumn J, Torpey, Dana, Kim, Jiyon, Hajcak, Greg, Rose, Suzanne, Gotlib, Ian H,
et al. (2011). Attentional biases for emotional faces in young children of mothers with
chronic or recurrent depression. Journal of Abnormal Child Psychology, 39, 125-135.
doi:10.1007/s10802-010-9438-6
24
Liossi, Christina, White, Paul, Croome, Natasha & Hatira, Popi. (2012). Pain-related bias in
the classification of emotionally ambiguous facial expressions in mothers of children with
chronic abdominal pain. Pain, 153, 674-681. doi:10.1016/j.pain.2011.12.004
25
Manoogian, Margaret M. (2011). My mother's bed. Health Communication, 26, 202-204.
doi:10.1080/10410236.2010.546772
26
Masterson, Marilyn K. (2011). Chronic sorrow in mothers of adult children with cerebral
palsy: An exploratory study. Dissertation Abstracts International Section A: Humanities and
Social Sciences, 71(7-A), 2660. Retrieved from
1-99010-154.
27
Smith, Mark S, Buchwald, Dedra S, Bogart, Andy, Goldberg, Jack, Smith, Wayne R & Afari,
Niloofar. (2010). Adolescent offspring of mothers with chronic fatigue syndrome. Journal of
Adolescent Health, 46, 284-291. doi:10.1016/j.jadohealth.2009.08.001
28
Tifferet, Sigal, Elizur, Yoel, Constantini, Shlomi, Friedman, Orna & Manor, Orly. (2010).
Maternal adaptation to pediatric neurosurgical diagnosis: A growth curve
analysis. Psychology & Health, 25, 213-229. doi:10.1080/08870440802245298
29
Tifferet, Sigal, Manor, Orly, Elizur, Yoel, Friedman, Orna & Constantini, Shlomi. (2010).
Maternal adaptation to pediatric illness: A personal vulnerability model.Children's Health
Larissa Sauder
A: Po, kk
A: Po, kk
A: keine Mütter
A: Po, kk
A: Po, kk
A: Po, kk
A: kein Mütter
A: Po, kk
A: Fokus Kinder
A: Po, kk
E
A: Po, kk
A: Fokus Kinder
A: Po, kk
A: Po, kk
92
Care, 39, 91-107. doi:10.1080/02739611003679840
30
Wolff, Joshua R. (2010). Fathers' experiences as primary medical caretakers of children
with life-threatening illnesses. Dissertation Abstracts International: Section B: The Sciences
and Engineering, 71(1-B), 676. Retrieved from
0-99140-419.
31
Barnes, Donna B & Murphy, Sheigla. (2009). Reproductive decisions for women with HIV:
Motherhood's role in envisioning a future. Qualitative Health Research, 19, 481-491.
doi:10.1177/1049732309332835
32
Burton, Peter, Lethbridge, Lynn & Phipps, Shelley. (2008). Children with disabilities and
chronic conditions and longer-term parental health. The Journal of Socio-Economics, 37,
1168-1186. doi:10.1016/j.socec.2007.01.032
33
Chen, Yung-Chi. (2010). Parental involvement of chronically ill mothers and its impact on
the child's education. Dissertation Abstracts International Section A: Humanities and Social
Sciences, 70(8-A), 2886. Retrieved from
0-99030-235.
34
Cohen, Lindsey L, Vowles, Kevin E & Eccleston, Christopher. (2010). Adolescent chronic
pain-related functioning: Concordance and discordance of mother-proxy and self-report
ratings. European Journal of Pain, 14, 882-886. doi:10.1016/j.ejpain.2010.01.005
35
Kub, Joan, Jennings, Jacky M, Donithan, Michele, Walker, Jennifer M, Land, Cassia Lewis
& Butz, Arlene. (2009). Life events, chronic stressors, and depressive symptoms in lowincome urban mothers with asthmatic children. Public Health Nursing, 26, 297-306.
doi:10.1111/j.1525-1446.2009.00784.x
36
Shields, Marinna Banks. (2009). African-American mothers with serious and persistent
mental illness: Social support, parenting satisfaction, and parenting style.Dissertation
Abstracts International: Section B: The Sciences and Engineering, 69(9-B), 5313. Retrieved
from
9-99060-118.
37
Tucker, Carolyn M, Butler, Ashley M, Loyuk, Imicuk S, Desmond, Frederic F & Surrency,
Sharon L. (2009). Predictors of a health-promoting lifestyle and behaviors among lowincome African American mothers and White mothers of chronically ill children. Journal of
the National Medical Association, 101(2), 103-110. Retrieved from
9-04681-001.
38
Vallido, Tamara, Wilkes, Lesley, Carter, Bernie & Jackson, Debra. (2010). Mothering
disrupted by illness: A narrative synthesis of qualitative research. Journal of Advanced
Nursing, 66, 1435-1445. doi:10.1111/j.1365-2648.2010.05350.x
39
White, Carmel Parker, White, Mark B & Fox, Melissa A. (2009). Maternal fatigue and its
relationship to the caregiving environment. Families, Systems, & Health, 27, 325-345.
doi:10.1037/a0018284
40
Williams, Sara E, Smith, Craig A, Bruehl, Stephen P, Gigante, Joseph & Walker, Lynn S.
(2009). Medical evaluation of children with chronic abdominal pain: Impact of diagnosis,
physician practice orientation, and maternal trait anxiety on mothers' responses to the
evaluation. Pain, 146, 283-292. doi:10.1016/j.pain.2009.07.039
41
Bakare, Muideen O, Omigbodun, Olayinka O, Kuteyi, Olugbenga B, Meremikwu, Martin M
& Agomoh, Ahamefule O. (2008). Psychological complications of childhood chronic
physical illness in Nigerian children and their mothers: The implication for developing
pediatric liaison services. Child and Adolescent Psychiatry and Mental Health, 2,
doi:10.1186/1753-2000-2-34
42
Copeland, Darcy Ann. (2008). The experience of violence and help-seeking among
mothers of adult chronically mentally ill individuals. Dissertation Abstracts International:
Section B: The Sciences and Engineering, 68(7-B), 4386. Retrieved from
Larissa Sauder
A: Väter
A: keine Mütter
A: Po, kk
E
A: Po, kk
A: Po, kk
E
A: Po, kk
E
E
A: Po, kk
A: Po, kk
A: Po, kk
93
8-99020-027.
43
Dewey, Deborah & Crawford, Susan G. (2007). Correlates of maternal and paternal
adjustment to chronic childhood disease. Journal of Clinical Psychology in Medical
Settings, 14, 219-226. doi:10.1007/s10880-007-9069-4
44
Duryea, Marie Malnati. (2008). Mothers with chronic physical illness and the parentification
of their children. Dissertation Abstracts International: Section B: The Sciences and
Engineering, 69(1-B), 714. Retrieved from
8-99140-215.
45
Evans, Subhadra & de Souza, Lorraine. (2008). Dealing with chronic pain: Giving voice to
the experiences of mothers with chronic pain and their children. Qualitative Health
Research, 18, 489-500. doi:10.1177/1049732308315433
46
Olsen, Brian, Berg, Cynthia A & Wiebe, Deborah J. (2008). Dissimilarity in mother and
adolescent illness representations of type 1 diabetes and negative emotional
adjustment. Psychology & Health, 23, 113-129. doi:10.1080/08870440701437343
47Scheffel, R. S, Kramer, C. K, Rados, D. V, Pinto, L. C, Crispim, D, Gross, J. L, et al.
(2008). The prevalence of chronic diabetic complications and metabolic syndrome is not
associated with maternal type 2 diabetes. Brazilian Journal of Medical and Biological
Research, 41, 1123-1128. doi:10.1590/S0100-879X2008001200013
48
Tifferet, Sigal, Manor, Orly, Constantini, Shlomi, Friedman, Orna & Yoel, Elizur. (2007).
Parental investment in children with chronic disease: The effect of child's and mother's
age. Evolutionary Psychology, 5, 844-859. doi:10.1177/147470490700500413
49
Ueno, Rie & Kamibeppu, Kiyoko. (2008). Narratives by Japanese mothers with chronic
mental illness in the Tokyo metropolitan area: Their feelings toward their children and
perceptions of their children's feelings. Journal of Nervous and Mental Disease, 196, 522530. doi:10.1097/NMD.0b013e31817cf721
50
White, Carmel Parker, Mendoza, Jaymi, White, Mark B & Bond, Christy. (2009). Chronically
ill mothers experiencing pain: Relational coping strategies used while parenting young
children. Chronic Illness, 5, 33-45. doi:10.1177/1742395309102820
51
Alam, Nurul. (2007). Unmet need for additional medical care for sick children in mother's
view in rural Bangladesh: Implications for improving child health services.Journal of
Biosocial Science, 39, 769-778. doi:10.1017/S002193200700185X
52
Annunziato, Rachel A, Rakotomihamina, Volana & Rubacka, Joseph. (2007). Examining
the effects of maternal chronic illness on child well-being in single parent families. Journal
of Developmental and Behavioral Pediatrics, 28, 386-391.
doi:10.1097/DBP.0b013e3181132074
53
Backman, Catherine, Del Fabro Smith, Linda, Smith, Sharon, Montie, Pam & Suto, Melinda.
(2007). 'Sometimes I can, sometimes I can't': The influence of arthritis on mothers'
habits. OTJR: Occupation, Participation and Health, 27, 77S-78S.
doi:10.1177/15394492070270S110
54
Drury, Anna Marie. (2007). Parental overprotection during childhood: Is it associated with
the development of internalizing symptoms for young adults? Dissertation Abstracts
7-99006-340.
55
Evans, Subhadra & Keenan, Thomas R. (2007). Parents with chronic pain: Are children
equally affected by fathers as mothers in pain? A pilot study. Journal of Child Health
Care, 11, 143-157. doi:10.1177/1367493507076072
56
Evans, Subhadra, Keenan, Thomas R & Shipton, Edward A. (2007). Psychosocial
adjustment and physical health of children living with maternal chronic pain. Journal of
Paediatrics and Child Health, 43, 262-270. doi:10.1111/j.1440-1754.2007.01057.x
57
Mednick, Lauren, Cogen, Fran, Henderson, Celia, Rohrbeck, Cynthia A, Kitessa, Doee &
Streisand, Randi. (2007). Hope more, worry less: Hope as a potential resilience factor in
Larissa Sauder
A: Po, kk
E
E
A: Po, kk
A: Po, kk
A: Po, kk
E
E
A: Po, kk
E
E
A:Po, keine
kranken Mütter
A: Väter
A: Fokus Kinder
A: Po, kk
94
mothers of very young children with type 1 diabetes. Children's Health Care, 36, 385-396.
doi:10.1080/02739610701601403
58
Monette, S, Seguin, L, Gauvin, L & Nikiema, B. (2007). Validation of a measure of maternal
perception of the child's health status. Child: Care, Health and Development, 33, 472-481.
doi:10.1111/j.1365-2214.2006.00713.x
59
Rahman, Atif & Creed, Francis. (2007). Outcome of prenatal depression and risk factors
associated with persistence in the first postnatal year: Prospective study from Rawalpindi,
Pakistan. Journal of Affective Disorders, 100, 115-121. doi:10.1016/j.jad.2006.10.004
60
Wilson, Sarah. (2007). 'When you have children, you're obliged to live': Motherhood,
chronic illness and biographical disruption. Sociology of Health & Illness, 29, 610-626.
doi:10.1111/j.1467-9566.2007.01008.x
61
Dahlquist, Lynnda M. (2003). Commentary: Are children with JRA and their families at risk
or resilient? Journal of Pediatric Psychology, 28, 45-46. doi:10.1093/jpepsy/28.1.45
62
Evans, Subhadra, Shipton, Edward A & Keenan, Thomas R. (2005). Psychosocial
functioning of mothers with chronic pain: A comparison to pain-free controls.European
Journal of Pain, 9, 683-690. doi:10.1016/j.ejpain.2005.01.002
63
Holland, Elizabeth Alberta. (2006). Relationship of problem-focused and emotion-focused
coping strategies to maternal self-efficacy beliefs in mothers of children with chronic
illness. Dissertation Abstracts International: Section B: The Sciences and
6-99014-115.
64
Jintrawet, Usanee & Harrigan, Rosanne C. (2003). Beliefs of mothers in Asian countries
and among Hmong in the United States about the causes, treatments, and outcomes of
acute illnesses: An integrated review of the literature. Issues in Comprehensive Pediatric
Nursing, 26, 77-88. doi:10.1080/01460860390197844
65
Konrad, Shelley Cohen. (2005). Mothers Of Children With Acquired Disabilities: Using The
Subjective Voice To Inform Parent/Professional Partnership. Omega: Journal of Death and
Dying, 51, 17-31. doi:10.2190/6DGR-JRM1-1E84-1HE9
66
Magana, Sandy M, Greenberg, Jan S & Seltzer, Marsha M. (2004). The health and wellbeing of black mothers who care for their adult children with schizophrenia.Psychiatric
Services, 55, 711-713. doi:10.1176/appi.ps.55.6.711
67
Pascoe, John M, Stolfi, Adrienne & Ormond, Mary B. (2006). Correlates of mothers'
persistent depressive symptoms: A national study. Journal of Pediatric Health Care, 20,
261-269. doi:10.1016/j.pedhc.2006.01.006
68
Routh, Donald K. (2003). Commentary: Juvenile rheumatic disease as a psychosocial
stressor. Journal of Pediatric Psychology, 28, 41-43. doi:10.1093/jpepsy/28.1.41
69
Seneviratne, Trudi & Conroy, Sue. (2006). Motherhood and mental illness. Henderson,
Claire [Ed], Smith, Catherine [Ed], Smith, Shubulade [Ed], Stevens, Angela [Ed].Women
and psychiatric treatment: A comprehensive text and practical guide. New York, NY, US:
Routledge/Taylor & Francis Group, US; pp. 87-104. Retrieved from
7-07500-006.
70
Seto, Masako, Cornelius, Marie D, Goldschmidt, Lidush, Morimoto, Kanehisa & Day, Nancy
L. (2005). Long-Term Effects of Chronic Depressive Symptoms Among Low-Income
Childrearing Mothers. Maternal and Child Health Journal, 9, 263-271. doi:10.1007/s10995005-0002-x
71
Bornstein, Jeremy E. (2004). Personality, coping, and adaptation in maternal caregivers of
children with chronic illness. Dissertation Abstracts International: Section B: The Sciences
and Engineering, 64(11-B), 5828. Retrieved from
4-99010-033.
72
Bybee, Deborah, Mowbray, Carol T, Oyserman, Daphna & Lewandowski, Lisa. (2003).
Larissa Sauder
A: Po, keine
kranken Mütter
A: ph, ne
E
A: Po, kk
E
A: Po, kk
A: Ph, nicht
chronisch krank
A: Po, kk
A: Po, kk
E
A: Fachartikel
A:keine Mütter
E
A: Po, kk
E
95
Variability in community functioning of mothers with serious mental illness.The Journal of
Behavioral Health Services & Research, 30, 269-289. doi:10.1007/BF02287317
73
Cronin, Anne Frances. (2004). Mothering a Child With Hidden Impairments. American
Journal of Occupational Therapy, 58, 83-92. doi:10.5014/ajot.58.1.83
74
Holditch-Davis, Diane, Cox, Mary Foster, Miles, Margaret Shandor & Belyea, Michael.
(2003). Mother-infant interactions of medically fragile infants and non-chronically ill
premature infants. Research in Nursing & Health, 26, 300-311. doi:10.1002/nur.10095
75
Krishnan, Katherine. (2004). A gift of lessons. Dowling, Cindy [Ed], Nicoll, Neil [Ed],
Thomas, Bernadette [Ed]. A different kind of perfect: Writings by parents on raising a child
with special needs. Boston, MA, US: Trumpeter Books, US; pp. 189-191. Retrieved from
6-13357-043.
76
Mantymaa, Mirjami, Puura, K, Luoma, I, Salmelin, R, Davis, H, Tsiantis, J, et al. (2003).
Infant-mother interaction as a predictor of child's chronic health problems.Child: Care,
Health and Development, 29, 181-191. doi:10.1046/j.1365-2214.2003.00330.x
77
McKeever, Patricia & Miller, Karen-Lee. (2004). Mothering children who have disabilities: A
Bourdieusian interpretation of maternal practices. Social Science & Medicine, 59, 11771191. doi:10.1016/j.socscimed.2003.12.023
78
Meltzer, Lisa J & Johnson, Suzanne Bennett. (2004). Summer camps for chronically ill
children: A source of respite care for mothers. Children's Health Care, 33, 317-331.
doi:10.1207/s15326888chc3304_5
79
Meltzer, Lisa Joan. (2003). Mothers of children with chronic illnesses: A caregiver burden
model and summer camp as respite care. Dissertation Abstracts International: Section B:
The Sciences and Engineering, 63(10-B), 4915. Retrieved from
3-95008-003.
80
Montgomery, Phyllis. (2005). Mothers with a serious mental illness: A critical review of the
literature. Archives of Psychiatric Nursing, 19, 226-235. doi:10.1016/j.apnu.2005.07.005
81
Copeland, Lucia G & Clements, Dianne B. (1993). Parental perceptions and support
strategies in caring for a child with a chronic condition. Issues in Comprehensive Pediatric
Nursing, 16, 109-121. doi:10.3109/01460869309084026
82
Davies, Lana K. (1993). Comparison of dependent-care activities for well siblings of
children with cystic fibrosis and well siblings in families without children with chronic
illness. Issues in Comprehensive Pediatric Nursing, 16, 91-98.
doi:10.3109/01460869309084024
83
Dipple, Heather, Smith, Susan, Andrews, Harry & Evans, Barbara. (2002). The experience
of motherhood in women with severe and enduring mental illness. Social Psychiatry and
Psychiatric Epidemiology, 37, 336-340. doi:10.1007/s00127-002-0559-2
84
Gantt, Laura. (2002). As normal a life as possible: Mothers and their daughters with
congenital heart disease. Health Care for Women International, 23, 481-491.
doi:10.1080/073993302760190083
85
Hunfield, Joke A. M, Perquin, Christel W, Bertina, Wieke, Hazebroek-Kampschreur, Alice A.
J. M, van Suijlekom-Smit, Lisette W. A, Koes, Bart W, et al. (2002). Stability of pain
parameters and pain-related quality of life in adolescents with persistent pain: A three-year
follow-up. The Clinical Journal of Pain, 18, 99-106. doi:10.1097/00002508-20020300000005
86
Law, G. Urquhart. (2002). Dissimilarity in adolescent and maternal representations of Type
1 diabetes: Exploration of relations to adolescent well-being. Child: Care, Health and
Development, 28, 369-378. doi:10.1046/j.1365-2214.2002.00286.x
87
Liakopoulou-Kairis, M, Alifieraki, T, Protagora, D, Korpa, T, Kondyli, K, Dimosthenous, E, et
al. (2002). Recurrent abdominal pain and headache: Psychopathology, life events, and
family functioning. European Child & Adolescent Psychiatry, 11, 115-122.
doi:10.1007/s00787-002-0276-0
Larissa Sauder
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
E
A: Po, kk
A: Po, kk
E
A: Po, kk
A: keine Mütter
A: Fokus Kind
A: Fokus Familie
96
88
London, Andrew S, Scott, Ellen K & Hunter, Vicki. (2002). Children and chronic health
conditions: Welfare reform and health-related carework. Cancian, Francesca M [Ed], Kurz,
Demie [Ed], London, Andrew S [Ed], Reviere, Rebecca [Ed], Tuominen, Mary C [Ed]. Child
care and inequality: Rethinking carework for children and youth. New York, NY, US:
Routledge, US; pp. 99-112. Retrieved from
3-02473-007.
89
Mowbray, Carol, Oyserman, Daphna, Bybee, Deborah & MacFarlane, Peter. (2002).
Parenting of mothers with a serious mental illness: Differential effects of diagnosis, clinical
history, and other mental health variables. Social Work Research, 26, 225-240.
doi:10.1093/swr/26.4.225
90
Nehring, Wendy M & Cohen, Felissa L. (1995). The development of an instrument to
measure the effects of a parent's chronic illness on parenting tasks. Issues in
Comprehensive Pediatric Nursing, 18, 111-123. doi:10.3109/01460869509080963
91
Copeland, Lucia G & Clements, Dianne B. (1993). Parental perceptions and support
strategies in caring for a child with a chronic condition. Issues in Comprehensive Pediatric
Nursing, 16, 109-121. doi:10.3109/01460869309084026
92
Davies, Lana K. (1993). Comparison of dependent-care activities for well siblings of
children with cystic fibrosis and well siblings in families without children with chronic
illness. Issues in Comprehensive Pediatric Nursing, 16, 91-98.
doi:10.3109/01460869309084024
93
94
Gantt, Laura. (2002). As normal a life as possible: Mothers and their daughters with
congenital heart disease. Health Care for Women International, 23, 481-491.
doi:10.1080/073993302760190083
95
Hunfield, Joke A. M, Perquin, Christel W, Bertina, Wieke, Hazebroek-Kampschreur, Alice A.
J. M, van Suijlekom-Smit, Lisette W. A, Koes, Bart W, et al. (2002). Stability of pain
parameters and pain-related quality of life in adolescents with persistent pain: A three-year
follow-up. The Clinical Journal of Pain, 18, 99-106. doi:10.1097/00002508-20020300000005
96
Law, G. Urquhart. (2002). Dissimilarity in adolescent and maternal representations of Type
1 diabetes: Exploration of relations to adolescent well-being. Child: Care, Health and
Development, 28, 369-378. doi:10.1046/j.1365-2214.2002.00286.x
97
Liakopoulou-Kairis, M, Alifieraki, T, Protagora, D, Korpa, T, Kondyli, K, Dimosthenous, E, et
al. (2002). Recurrent abdominal pain and headache: Psychopathology, life events, and
family functioning. European Child & Adolescent Psychiatry, 11, 115-122.
doi:10.1007/s00787-002-0276-0
98
London, Andrew S, Scott, Ellen K & Hunter, Vicki. (2002). Children and chronic health
conditions: Welfare reform and health-related carework. Cancian, Francesca M [Ed], Kurz,
Demie [Ed], London, Andrew S [Ed], Reviere, Rebecca [Ed], Tuominen, Mary C [Ed]. Child
care and inequality: Rethinking carework for children and youth. New York, NY, US:
Routledge, US; pp. 99-112. Retrieved from
3-02473-007.
99
doi:10.1093/swr/26.4.225
100
Nehring, Wendy M & Cohen, Felissa L. (1995). The development of an instrument to
measure the effects of a parent's chronic illness on parenting tasks. Issues in
Comprehensive Pediatric Nursing, 18, 111-123. doi:10.3109/01460869509080963
101
Hamilton, Elizabeth B, Hammen, Constance, Minasian, Gayane & Jones, Maren. (1993).
Larissa Sauder
A: Po, kk
A: Ph ne
A: Ph, ne
A: Po, kk
A: Po, kk
E
A: Po, kk
A: keine Mütter
A: Fokus Kind
A: Fokus Familie
A: Po, kk
E
A: Ph, ne
A: Fokus Kinder
97
Communication styles of children of mothers with affective disorders, chronic medical
illness, and normal controls: A contextual perspective. Journal of Abnormal Child
Psychology, 21, 51-63. doi:10.1007/BF00910488
102
Hamilton, Elizabeth B, Jones, Maren & Hammen, Constance. (1993). Maternal interaction
style in affective disordered, physically ill, and normal women. Family Process, 32, 329340. doi:10.1111/j.1545-5300.1993.00329.x
103
Hamlett, Kim W, Pellegrini, David S & Katz, Kathy S. (1992). Childhood chronic illness as a
family stressor. Journal of Pediatric Psychology, 17, 33-47. doi:10.1093/jpepsy/17.1.33
104
Ireys, Henry T, DeVet, Katherine A & Chernoff, Robin. (2001). Who joins a preventive
intervention? How risk status predicts enrollment. Journal of Community Psychology, 29,
417-427. doi:10.1002/jcop.1026
105
Knafl, Kathleen & Zoeller, Linda. (2000). Childhood chronic illness: A comparison of
mothers' and fathers' experiences. Journal of Family Nursing, 6, 287-302.
doi:10.1177/107484070000600306
106
Martinson, Ida M, Davis, Anne J, Liu-Chiang, Chong-Yeu, Yi-Hua, Liang, Qiao, Jin & Gan,
Madam. (1995). Chinese mothers' reactions to their child's chronic illness.Health Care for
Women International, 16, 365-375. doi:10.1080/07399339509516189
107
Oke, Carolyn Louise. (2000). Differential patterns of maternal and child adaptation to
chronic illness. Dissertation Abstracts International: Section B: The Sciences and
0-95022-295.
108
Radtke, H. Lorraine & Mens-Verhulst, Janneke. (2001). Being a mother and living with
asthma: An exploratory analysis of discourse. Journal of Health Psychology, 6, 379-391.
doi:10.1177/135910530100600402
109
Rodrigue, James R & Houck, Christopher D. (2001). Parental health and adolescent
behavioral adjustment. Children's Health Care, 30, 79-91.
doi:10.1207/S15326888CHC3002_1
110
Smith, Gregory C, Hatfield, Agnes B & Miller, David C. (2000). Planning by older mothers
for the future care of offspring with serious mental illness. Psychiatric Services, 51, 11621166. doi:10.1176/appi.ps.51.9.1162
111
Downey, Geraldine, Purdie, Valerie & Schaffer-Neitz, Rebecca. (1999). Anger transmission
from mother to child: A comparison of mothers in chronic pain and well mothers. Journal of
Marriage and the Family, 61, 62-73. doi:10.2307/353883
112
Haymes, Elayne B. (1998). Level of maternal stress in mothers with chronic mental
illness. Dissertation Abstracts International Section A: Humanities and Social
Sciences,59(6-A), 2187. Retrieved from
8-95023-103.
113
Horton, Trudi Venters. (1999). The role of religion in the adjustment of mothers of children
with chronic physical conditions. Dissertation Abstracts International: Section B: The
Sciences and Engineering, 60(3-B), 1302. Retrieved from
9-95018-229.
114
Johnson Silver, Ellen, Bauman, Laurie J & Weiss, Elisa S. (1999). Perceived role restriction
and depressive symptoms in mothers of children with chronic health conditions. Journal of
Developmental and Behavioral Pediatrics, 20, 362-369. doi:10.1097/00004703-19991000000011
115
Leonetti, Jennifer Anne. (1997). The influence of culture on coping in chronically ill
European and Hispanic American children and their mothers. Dissertation Abstracts
7-95022-384.
116
Larissa Sauder
E
A: Po, kk
A: keine Mütter
A: Po, kk
A: Po, kk
E
E
A: Po, keine
kranken Mütter
A?
A: Ph, ne
A: Ph, ne
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
98
Meyers, Barbara Berke. (1997). Maternal perceptions of parenting infants with congenital
heart disease: Implications for early intervention. Dissertation Abstracts International:
7-95022-066.
117
Thyen, Ute, Terres, Nancy M, Yazdgerdi, Susan R & Perrin, James M. (1998). Impact of
long-term care of children assisted by technology on maternal health. Journal of
Developmental and Behavioral Pediatrics, 19, 273-282. doi:10.1097/00004703-19980800000006
118
Titus, Janet Catherine. (1998). The generalizability of observational ratings of parent-child
interaction with young children who have a chronic illness or disability.Dissertation
Abstracts International: Section B: The Sciences and Engineering, 59(4-B), 1909. Retrieved
from
8-95020-186.
119
Williams, Phoebe Dauz, Williams, Arthur R, Hanson, Sandra, Graff, Carolyn, Ridder,
Lavonne, Curry, Heather, et al. (1999). Maternal mood, family functioning, and perceptions
of social support, self-esteem, and mood among siblings of chronically ill
children. Children's Health Care, 28, 297-310. doi:10.1207/s15326888chc2804_2
120
Zahr, L. K & El-Haddad, A. (1998). Temperament and chronic illness in Egyptian
children. International Journal of Intercultural Relations, 22, 453-465. doi:10.1016/S01471767%2898%2900018121
Allen, Julie Davis. (1996). Maternal well-being and a chronically-ill child. Dissertation
Abstracts International Section A: Humanities and Social Sciences, 57(6-A), 2686.
Retrieved from
6-95024-063.
122
Driskill, Gail. (1996). Chronically ill children: Maternal stress and psychological
symptomatology. Dissertation Abstracts International: Section B: The Sciences and
6-95003-324.
123
Gabor, Linda M & Farnham, Rita. (1996). The impact of children with chronic illness and/or
developmental disabilities on low-income, single-parent families. Infant-Toddler
Intervention, 6(2), 167-180. Retrieved from
8-02786-006.
124
Green, Sheila Sullivan. (1996). Adolescents' responses to single mothers' chronic physical
illness. Dissertation Abstracts International: Section B: The Sciences and
6-95021-142.
125
Ireys, Henry T & Silver, Ellen J. (1996). Perception of the impact of a child's chronic illness:
Does it predict maternal mental health? Journal of Developmental and Behavioral
Pediatrics, 17, 77-83. doi:10.1097/00004703-199604000-00002
126
Nicholson, Joanne, Geller, Jeffrey L & Fisher, William H. (1996). "Sylvia Frumkin" has a
baby: A case study for policymakers. Psychiatric Services, 47(5), 497-501. Retrieved from
6-04158-002.
127
Patrick, Julie Hicks & Pruncho, Rachel A. (1996). Mothers' perceptions of service use and
unmet service needs for their adult offspring with chronic mental illness.Psychiatric
Annals, 26(12), 757-765. Retrieved from
7-02197-002.
128
Thompson, Robert J Jr., Gustafson, Kathryn E & Gil, Karen M. (1995). Psychological
adjustment of adolescents with cystic fibrosis or sickle cell disease and their mothers.
Larissa Sauder
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Fokus Kinder
A: Po, kk
A:?
A: Po, kk
A: Po, kk
99
Wallander, Jan L [Ed], Siegel, Lawrence J [Ed]. Adolescent health problems: Behavioral
perspectives. New York, NY, US: Guilford Press, US; pp. 232-247. Retrieved from
5-98820-011.
129
Wallander, Jan L & Noojin, Ashley Bryant. (1995). Mothers' report of stressful experiences
related to having a child with a physical disability. Children's Health Care,24, 245-256.
doi:10.1207/s15326888chc2404_4
130
Weiss, Elisa Sondra. (1997). An expanded theory of social stress: The case of chronic
physical illness in inner-city minority mothers. Dissertation Abstracts International Section
A: Humanities and Social Sciences, 57(9-A), 4159. Retrieved from
7-95005-188.
131
Gibson, Cheryl Heather. (1994). A study of empowerment in mothers of chronically ill
children. Dissertation Abstracts International: Section B: The Sciences and
6-71920-001.
132
Glasser, Jeffrey Edward. (1994). The impact of marital status on families with a chronically
ill child. Dissertation Abstracts International: Section B: The Sciences and
6-72490-001.
133
Pelletier, L, Godin, G, Lepage, L & Dussault, G. (1994). Social support received by mothers
of chronically ill children. Child: Care, Health and Development, 20, 115-131.
doi:10.1111/j.1365-2214.1994.tb00858.x
134
Perdue, Bobbie Jean. (1994). Self-perceived competencies of latency age children of
chronically, physically ill mothers as a function of maternal psychosocial adjustment to
illness and children's reports of mothering behaviors. Dissertation Abstracts International:
6-71554-001.
135
Radzik, Mari. (1994). Hemophilia and the human immunodeficiency virus: An exploratory
study of parental coping and adolescent self-esteem. Dissertation Abstracts International:
6-72545-001.
136
Silver, Ellen Johnson. (1994). Resources and mental health in mothers of chronically ill
children. Dissertation Abstracts International: Section B: The Sciences and
6-73513-001.
137
Silver, Ellen Johnson, Bauman, Laurie J & Ireys, Henry T. (1995). Relationships of selfesteem and efficacy to psychological distress in mothers of children with chronic physical
illnesses. Health Psychology, 14, 333-340. doi:10.1037/0278-6133.14.4.333
138
Stetz, Kathleen M, Lewis, Frances Marcus & Houck, Gail M. (1994). Family goals as
indicants of adaptation during chronic illness. Public Health Nursing, 11, 385-391.
doi:10.1111/j.1525-1446.1994.tb00203.x
139
Woods, Nancy Fugate & Lewis, Frances Marcus. (1995). Women with chronic illness: Their
views of their families' adaptation. Health Care for Women International, 16, 135-148.
doi:10.1080/07399339509516165
140
Zimburean, Donna Fowler. (1994). The play of chronically ill children. Dissertation Abstracts
International Section A: Humanities and Social Sciences, 54(11-A), 3985. Retrieved from
6-74801-001.
141
Bell, Ruthanne E. (1992). Reactions to child victims and their families. Dissertation
Larissa Sauder
A: Po, kk
E
A: Po, kk
A: Po, kk
A: Po, kk
A: Fokus Kinder
E
A: Po, kk
A: Po, kk
E
A:keine Mütter
A: Po, kk
A: Fokus Kinder
100
Abstracts International, 52(11-B), 6133. Retrieved from
3-70314-001.
142
Burkhart, Patricia V. (1993). Health perceptions of mothers of children with chronic
conditions. Maternal-Child Nursing Journal, 21(4), 122-129. Retrieved from
4-26048-001.
143
Glazer-Waldman, Hilda R, Zimmerman, Judith E, Landreth, Garry L & Norton, Douglas.
(1992). Filial therapy: An intervention for parents of children with chronic
illness. International Journal of Play Therapy, 1, 31-42. doi:10.1037/h0090233
144
Kromer, Megan E. (1992). The impact of respite care on stress in mothers of children with
handicapping conditions. Dissertation Abstracts International, 53(4-A), 1057. Retrieved
from
3-73890-001.
145
McKeever, Patricia Taylor. (1993). Mothering chronically ill, technology-dependent children:
An analysis using critical theory. Dissertation Abstracts International,53(12-A), 4487-4488.
Retrieved from
5-70979-001.
146
Perrin, Ellen C, Ayoub, Catherine C & Willett, John B. (1993). In the eyes of the beholder:
Family and maternal influences on perceptions of adjustment of children with a chronic
illness. Journal of Developmental and Behavioral Pediatrics, 14(2), 94-105. Retrieved from
3-38127-001.
147
Strauss, Phyllis K. (1992). Chronic maternal illness: The adjustment of young adult
offspring. Dissertation Abstracts International, 53(6-A), 1804-1805. Retrieved from
4-70440-001.
148
Turner-Henson, Anne. (1993). Chronically ill children's mothers' perceptions of
environmental variables. Dissertation Abstracts International, 53(7-B), 3405-3406.
Retrieved from
4-71372-001.
149
Williams, Phoebe Dauz, Lorenzo, Florita D & Borja, Maridel. (1993). Pediatric chronic
illness: Effects on siblings and mothers. Maternal-Child Nursing Journal, 21(4), 111-121.
Retrieved from
4-26094-001.
150
Woods, Nancy F & Lewis, Frances M. (1992). Design and measurement challenges in
family research. Western Journal of Nursing Research, 14, 397-403.
doi:10.1177/019394599201400312
151
Bauman, Laurie J & Adair, Elissa G. (1992). The use of ethnographic interviewing to inform
questionnaire construction. Health Education Quarterly, 19, 9-23.
doi:10.1177/109019819201900102
152
Cummings, S. Thomas, Bayley, Helen C & Rie, Herbert E. (1966). Effects of the child's
deficiency on the mother: A study of mothers of mentally retarded, chronically ill and
neurotic children. American Journal of Orthopsychiatry, 36, 595-608. doi:10.1111/j.19390025.1966.tb02311.x
153
Dura, Jason R. (1988). A comparison of family environment and family member
characteristics in families with maternal chronic pain, diabetes, or no illness.Dissertation
Abstracts International, 48(9-B), 2778. Retrieved from
8-57199-001.
154
Dura, Jason R & Beck, Steven J. (1988). A comparison of family functioning when mothers
Larissa Sauder
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Po, kk
A: Fokus Kinder
A: Po, kk
A: Po, kk
A: keine chronisch
kranken Mütter
A: keine chronisch
kranken Mütter
A: Po, kk
A: Fokus Familie
A: Fokus Familie
101
have chronic pain. Pain, 35, 79-89. doi:10.1016/0304-3959%2888%2990279-5
155
Florian, Victor & Krulik, Tamar. (1991). Loneliness and social support of mothers of
chronically ill children. Social Science & Medicine, 32, 1291-1296. doi:10.1016/02779536%2891%2990045-E
156
Hough, Edythe E, Lewis, Frances M & Woods, Nancy F. (1991). Family response to
mother's chronic illness: Case studies of well- and poorly adjusted families.Western Journal
of Nursing Research, 13, 568-596. doi:10.1177/019394599101300502
157
Tavormina, Joseph B. (1977). A Comprehensive Overview of an Ever-Broadening
Topic. PsycCRITIQUES, 22, 66-67. doi:10.1037/015738
158
Turner-Henson, Anne, Holaday, Bonnie & Swan, James H. (1992). When parenting
becomes caregiving: Caring for the chronically ill child. Family & Community Health: The
Journal of Health Promotion & Maintenance, 15(2), 19-30. Retrieved from
3-02175-001.
Eingeschlossene Titel->Abstracts 158<28<(12) 10
1/138
Stetz, Kathleen M, Lewis, Frances Marcus & Houck, Gail M. (1994). Family goals as
indicants of adaptation during chronic illness. Public Health Nursing, 11, 385-391.
doi:10.1111/j.1525-1446.1994.tb00203.x
Examined goals of families with chronically ill mothers and the way these goals relate to
family functioning, using previously published data from a 5-occasion, longitudinal study (F.
M. Lewis and M. A. Hammond; see record 1994-02402-001). The data set from Occasion
4, of 103 families with mothers with breast cancer, diabetes, or fibrocystic breast disease,
were analyzed using a coding scheme generated from Occasion 2 and 3 data. Content
analysis of responses revealed 10 mutually exclusive categories of family goals: viability of
children, cohesion, adaptation, boundary alterations, health maintenance, conflict
management, individual achievements and pursuits, acquisition of possessions, financial
stability, and family relocation. Types of goals identified did not differ by disease type.
Results suggest that family-system goals are relatively enduring and not readily discarded
in response to health or illness disruption.
2/135
Radzik, Mari. (1994). Hemophilia and the human immunodeficiency virus: An exploratory
study of parental coping and adolescent self-esteem. Dissertation Abstracts International:
Section B: The Sciences and Engineering, 54(9-B), 4931.
3/130
Weiss, Elisa Sondra. (1997). An expanded theory of social stress: The case of chronic
physical illness in inner-city minority mothers. Dissertation Abstracts International Section
A: Humanities and Social Sciences, 57(9-A), 4159.
4/108
Radtke, H. Lorraine & Mens-Verhulst, Janneke. (2001). Being a mother and living with
asthma: An exploratory analysis of discourse. Journal of Health Psychology, 6, 379-391.
doi:10.1177/135910530100600402
Although contemporary scholarship on the psychology of women has recognized the
significance of motherhood for women, this positioning has received little attention from
researchers interested in women and chronic illness. In this article we begin to fill this gap
by exploring the complexity of being a mother when women are chronically ill. We focus on
mothers with asthma and, adopting a discursive approach, analyze three interviews with
asthmatic mothers using discourse analysis to explore how they negotiate their identities.
The women were white, Dutch autochthones, who ranged in age from 31 to 60 years. Two
were diagnosed with asthma in early childhood and one was diagnosed at age 40. We
argue that being a mother is relevant to how women live with asthma.
5/107
Oke, Carolyn Louise. (2000). Differential patterns of maternal and child adaptation to
chronic illness. Dissertation Abstracts International: Section B: The Sciences and
Engineering, 61(5-B), 2774.
6/102
Hamilton, Elizabeth B, Jones, Maren & Hammen, Constance. (1993). Maternal interaction
style in affective disordered, physically ill, and normal women. Family Process, 32, 329340. doi:10.1111/j.1545-5300.1993.00329.x
Studied affective style (AS) and communication deviance (CD) in mothers with unipolar
depression, bipolar disorder, or chronic physical illness and in normal controls. The sample
consisted of 64 mothers with children aged 8–26 yrs. Assessment instruments included the
Schedule for Affective Disorders and Schizophrenia—Lifetime Version and a conflict
resolution task. Unipolar mothers were more likely to show negative AS than were any
Larissa Sauder
A: Po, kk
A: Fokus Familie
A: keine kranken
Mütter
A: Po, kk
Bemerkung
E
NV
Kein Text
auffindbar
A: Q
Kein Text
auffindbar
A:Q
E
V
Kein Text
auffindbar
A:Q
A: Ph, ne
Vergleichsstudie
102
other maternal group. Chronic stress, few positive life events, and single parenting were
associated with AS. CD was associated solely with lower SES. Results suggest that
dysfunctional interactions are determined not only by maternal psychopathology, but also
by an array of contextual factors related to the quality of the family environment.
7/99
doi:10.1093/swr/26.4.225
This study examined the effects of mental illness on parenting in a large urban-based
sample of women with serious mental illness. Seventy percent of the sample were women
from ethnic minority groups, average age mid-30s; all had care responsibility for at least
one minor child. Diagnostic Interview Schedule modules were administered; the women
were interviewed to obtain information on parenting, clinical history, and current functioning.
Diagnosis had a small but significant negative effect on parenting attitudes and behaviors,
and there were race-by-diagnosis interactions. However, current symptoms mediated the
effects of diagnosis and chronicity on parenting stress, and current symptomatology and
community functioning partially mediated the effects of diagnosis on parenting satisfaction.
Researchers-practitioners need to assess the status of mothers with mental illness rather
than assuming problems or intervention needs.
8/93
Background This study considers the experience of motherhood of women who are patients
of the rehabilitation services in Leicester. Method Data were collected from case notes, by
semi-structured interviews with all women identified as mothers, and by enquiries with key
workers on demographic characteristics, number of children, contact with and separations
from these children, and other relationships. Results Fifty-eight women had 122 children. Of
the mothers, 68 % were permanently separated from at least one child before the age of 18
years, and often had little or no subsequent contact with them. There was also attrition of
other important relationships. There was scanty documentation about these issues in
medical notes. Conclusion Many women in long-term psychiatric care have experienced
multiple losses. Clinicians should be mindful of this.
9/80
Montgomery, Phyllis. (2005). Mothers with a serious mental illness: A critical review of the
literature. Archives of Psychiatric Nursing, 19, 226-235. doi:10.1016/j.apnu.2005.07.005
The desire to mother in women with a serious mental illness (SMI) is increasingly
recognized by health care professionals. Defining women with an SMI strictly in terms of
cause, course, and treatment overshadows the diversity of their role as a mother. A review
of the literature reveals that limited published research exists on the subjective experiences
of mothers with an SMI. Often, the reviewed studies reinforce mothers as pathological.
Viewed as lacking mothering abilities, they are not recognized as mothers. This article
critically examines how the literature about mothers with an SMI has contributed to their
marginalized position. To this end, a literature review was undertaken and examined from
Oliver's theoretical notion of subjectivity from the marginalized or “othered” position [Oliver,
K. (2001). Witnessing: Beyond Recognition. Minneapolis, MN: University of Minnesota
Press]. Subjectivity based on witnessing a mother's self-identity creates possibilities that
are not exclusionary because of her difference secondary to illness.
10/72
Bybee, Deborah, Mowbray, Carol T, Oyserman, Daphna & Lewandowski, Lisa. (2003).
Variability in community functioning of mothers with serious mental illness.The Journal of
Behavioral Health Services & Research, 30, 269-289. doi:10.1007/BF02287317
In thepost-deinstitutionalization era, everyday community functioning is an important aspect
of assessment and treatment of individuals with serious mental illness. The current study
focuses on correlates of community functioning among 332 low-income mothers with
serious mental illness. Results revealed significant relationships between everyday
functioning and a number of demographic, psychiatric, contextual, and mental health
treatment variables. Current psychiatric symptoms accounted for the greatest amount of
variance and completely mediated the effects of diagnosis and substance abuse history on
community functioning; yet contextual variables such as financial worries and social support
were also significant predictors, even after controlling for symptoms and other clinical
characteristics. Additionally, use of mental health services was a significant moderator of
the effect of social stress on community functioning. Implications of results for future
research and practice are discussed.
11/70
Seto, Masako, Cornelius, Marie D, Goldschmidt, Lidush, Morimoto, Kanehisa & Day, Nancy
L. (2005). Long-Term Effects of Chronic Depressive Symptoms Among Low-Income
Larissa Sauder
E
NV
A: Ph, ne
Untersucht den
Unterbruch der
Beziehung
aufgrund
Psychiatrieaufenth
alt
E
N
Lit Review
A: Ph, ne
Untersucht
Auswirkungen
A: Ph, ne
Untersucht
103
Childrearing Mothers. Maternal and Child Health Journal, 9, 263-271. doi:10.1007/s10995005-0002-x
Objectives: Longitudinal studies of maternal depression in the postpartum period have
demonstrated that a chronic state of depressive symptoms is not rare. In spite of this,
however, the characteristics of chronically depressed mothers have rarely been studied.
This study examines the demographic and socioenvironmental characteristics across time
of childrearing women with chronic depressive symptoms. Methods: A cohort of 476
childrearing lower-income mothers was interviewed from the first trimester of pregnancy
through the tenth year postpartum. The Center for Epidemiologic Studies-Depression Scale
(CES-D; Radloff, L. (1977) Appl Psychol Meas 1:385–401) was used to define depressive
symptomatology. Four groups were defined based on the CES-D scores at 18 months, 3, 6
and 10 years: never-depressed (CES-D < 16), depressed only at one phase (CES-D ≥ 16),
chronically mildly depressed (CES-D > 16 and ≤24 at three or more phases), and
chronically severely depressed (CES-D ≥ 25 at three or more times). Demographic and
socioenvironmental characteristics of the groups were evaluated across time. Results:
Chronically depressed women compared to never-depressed women were less likely to be
married, had less education, had lower family income, and were more likely to use
substances. They reported more frequent arguments with close family members or friends,
separation/divorce with partners, financial problems, less social support, and more financial
strain. Conclusions: Women who continue to be depressed across the 10 postpartum years
have less optimal outcomes compared to women who are not depressed and those who
are only intermittently depressed. Pregnancy and delivery and subsequent pediatric visits
are important times to identify women who are depressed.
12/67
Pascoe, John M, Stolfi, Adrienne & Ormond, Mary B. (2006). Correlates of mothers'
persistent depressive symptoms: A national study. Journal of Pediatric Health Care, 20,
261-269. doi:10.1016/j.pedhc.2006.01.006
The purpose of this study was to examine the prevalence, persistence, and correlates of
mothers’ depressive symptoms over a 5-year period in a nationally representative sample
of the United States population.
Method: Data from 2235 mothers in the National Survey of Families and Households, Wave
I, 1987-1988, and Wave II, 1992-1994, were analyzed. Outcome measures were scores on
the Center for Epidemiological Studies Depression Scale (CES-D, 12-item version) and a
validated three-item depression screen.
Results: One fifth of study mothers had positive CES-D scores and almost half (48%) had
negative CES-D scores in both waves. Wave I risk factors for persistent “positive” CES-D
scores were maternal age less than 30 years (24%), African-American (33%), never
married (26%) or divorced (32%), education less than high school (35%), and indigent
(32%). Adjusted odds ratios (AOR) and 95% confidence intervals for persistent “positive”
versus persistent “negative” CES-D scores were: age less than 30 years (Wave I), AOR =
1.64, (1.22-2.21); unmarried (Wave II), AOR = 2.60, (1.89-3.56); education less than high
school (Wave II), AOR = 2.18, (1.41-3.38); and indigent (Wave II), AOR = 2.09 (1.36-3.21).
Discussion: About one fifth of the study sample reported high depressive symptoms twice
over a 5-year period. Depression in women, especially mothers, is an urgent public health
problem.
13/62
Evans, Subhadra, Shipton, Edward A & Keenan, Thomas R. (2005). Psychosocial
functioning of mothers with chronic pain: A comparison to pain-free controls.European
Journal of Pain, 9, 683-690. doi:10.1016/j.ejpain.2005.01.002
This study compared the functioning of mothers experiencing chronic pain and control
mothers on a range of psychosocial variables. Participants included 39 mothers with
chronic pain conditions ranging from migraine and arthritis to chronic neck and back pain
and 35 control mothers with out chronic pain. Analyses indicated that mothers with chronic
pain experienced more physical, psychological and social difficulties when compared to
controls. More difficulties were reported in completing day-to-day parenting tasks in
mothers with chronic pain. Consistent with the biopsychosocial model of chronic pain,
psychosocial variables accounted for approximately half of the variance in chronic pain
mothers' physical functioning scores. The importance of psychological variables in the
experience of chronic pain, the potential reduction in parenting efficacy and the risk that
these influences hold for children are discussed.
14/60
Wilson, Sarah. (2007). 'When you have children, you're obliged to live': Motherhood,
chronic illness and biographical disruption. Sociology of Health & Illness, 29, 610-626.
doi:10.1111/j.1467-9566.2007.01008.x
identity, in this instance HIV infection and motherhood. It is argued that, viewed in this light,
Larissa Sauder
Auswirkungen
Kohortenstudie
A: Ph, ne
Quantitive
Untersuchung
E
V
E
V
104
intense threat which may be posed to key identities by chronic, potentially fatal illnesses,
and the fundamental re-working of such identities occasioned by such threats. With
reference to the empirical study on which this paper draws, it is shown that the twelve
respondents' emphasis on their need to survive and to protect their children, represented a
analysis problematises work that suggests that biographical disruption is less relevant to
account of gender and caring responsibilities in further work in this field.
15/53
Backman, Catherine, Del Fabro Smith, Linda, Smith, Sharon, Montie, Pam & Suto, Melinda.
(2007). 'Sometimes I can, sometimes I can't': The influence of arthritis on mothers'
habits. OTJR: Occupation, Participation and Health, 27, 77S-78S.
doi:10.1177/15394492070270S110
The purpose of this study was threefold: (1) to describe the effect of chronic inflammatory
arthritis on participation in the role of mother; (2) to develop a conceptual framework to
guide future studies; and (3) to identify strategies to facilitate the performance of mothering
tasks to share with other mothers. In-depth interviews were conducted with a purposive
sample of 12 women with inflammatory arthritis. Women's ages ranged from 24 to 56 years
and each participant had one to six children living at home. Contextual factors, such as the
life stage of the mother and the children and the duration and management of the mother's
arthritis, influenced the extent to which each mother experienced and described her role.
Arthritis symptoms affected habits that contribute to participation in mothering tasks.
Mothers described how they developed new habits and new ways of engaging in mothering
tasks. The new habits or strategies that some participants considered successful in
supporting their mothering tasks may help others to accommodate symptoms and
limitations presented by arthritis and other chronic illnesses.
16/52
Annunziato, Rachel A, Rakotomihamina, Volana & Rubacka, Joseph. (2007). Examining
the effects of maternal chronic illness on child well-being in single parent families. Journal
of Developmental and Behavioral Pediatrics, 28, 386-391.
doi:10.1097/DBP.0b013e3181132074
Objective: Chronic illness is highly prevalent among adults with children. It is therefore
important to understand how parental illness may or may not have an impact on affected
families. Findings thus far have suggested that differences between children with and
without a sick parent are minimal, but there are individual and familial moderators of
outcome. It is unclear whether these results are generalizable to single-parent families, The
purpose of the present study was to examine whether maternal chronic illness affects
multiple aspects of child functioning in a large, ethnically diverse sample of single-parent
families compared to those not affected by illness. Potential moderators of differences,
including maternal distress, parenting variables (aggravation and warmth), functional
impairment related to illness, and demographic characteristics were also tested. Methods:
Using data from the Child Development Study (CDS), 812 mother-child pairs were studied.
Mothers completed measures of child internalizing, externalizing, and positive behaviors,
while children completed a measure of depression. Results: The results indicated that
overall there were no differences between children with or without a sick mother on the
measures of well-being. Higher symptom levels among both cohorts were associated with
maternal distress and aggravation in parenting only. However, children with a sick mother
were more likely to have a consultation due to emotional difficulties. Conclusion: Several
areas for future work on how illness affects single-parent families were identified such as
prospectively studying illnesses with a variable course and determining which protective
factors promote resiliency for children in this difficult situation.
17/50
White, Carmel Parker, Mendoza, Jaymi, White, Mark B & Bond, Christy. (2009). Chronically
ill mothers experiencing pain: Relational coping strategies used while parenting young
children. Chronic Illness, 5, 33-45. doi:10.1177/1742395309102820
Objective: There has been little research on women who are parenting while they
experience pain and none of this research has focused on mothers with young children.
The purpose of this study was to consider relational coping strategies generated by
mothers that they used when parenting young children and experiencing pain. Methods:
Two-hundred sixty-two mothers participated in this survey research; 171 who have either
multiple sclerosis (MS) or rheumatoid arthritis (RA), and a comparison group of 91well
mothers. Mothers completed questionnaires inquiring about (a) their coping strategies, (b)
levels of pain, fatigue and physical functioning, and (c) if they were currently experiencing
an exacerbation of their chronic illness. Results: Well mothers reported using more selfcare when parenting while experiencing pain. Mothers with RA were more likely to set
Larissa Sauder
E
V
A: Ph, ne
Fokus Auswirkung
auf Kinder
E
V
105
boundaries around their behaviour.Women with MS who were experiencing an
exacerbation changed their coping strategies to include more child activities and encourage
more mature child behaviour when compared to women with RA who were experiencing an
exacerbation. Discussion: From the perspective of relational coping theory, mothers
consider their own pain while simultaneously attending to their responsibilities as a parent.
Previous research has suggested that women may withdraw or reduce their parenting
activities when they are in pain and this study supported the previous research, especially
for women with RA.
18/49
Ueno, Rie & Kamibeppu, Kiyoko. (2008). Narratives by Japanese mothers with chronic
mental illness in the Tokyo metropolitan area: Their feelings toward their children and
perceptions of their children's feelings. Journal of Nervous and Mental Disease, 196, 522530. doi:10.1097/NMD.0b013e31817cf721
Women with mental illness generally have normal fertility rates. Mothers with mental illness
think that their children are important for their lives but also experience difficulties in relating
to their children. Therefore, it is important to understand the mothers' perception of what
experiences influence them or their parenting practices in relationships with their children.
We conducted narrative interviews with 20 Japanese mothers who were being treated for
either schizophrenia or mood disorders. The data were analyzed using the Modified
Grounded Theory Approach. For the mothers, their feelings toward their children and their
perception of their children's feelings toward them or their illness influenced the mothers
and their parenting practices. Implications for support are discussed and directions for
future research are presented.
19/44
Duryea, Marie Malnati. (2008). Mothers with chronic physical illness and the parentification
of their children. Dissertation Abstracts International: Section B: The Sciences and
8-99140-215.
More than 133 million Americans are living with chronic conditions and this number
continues to rise (Partnership for Solutions, 2004); by 2020, it is estimated that 157 million
people will suffer from chronic illnesses (Anderson, 2003), a large percentage of whom are
in their child-rearing stage of life. Incorporating concepts from family systems and family
development theories, this exploratory study examined the impact of maternal chronic
physical illness on children. Specifically, it examined the extent to which length of illness
and symptom severity of fibromyalgia and rheumatoid arthritis; mother's age, educational
level, and marital status; perceived effects of the illness on parent, child, and parent-child
interactions; and parent and child's perceived availability of and satisfaction with support
are related to the child's parentification. Two-hundred mothers and their oldest child, aged
11-17 years, answered the researcher-developed questionnaire that had been mailed to
them; youths also completed the Parentification Questionnaire - Youth. Results indicated
that parentification was greater for older children, females more than males, and boys
whose mothers had the illness longer. Higher parentification scores also were obtained by
children whose mothers reported lower satisfaction with support and who felt more
burdened by their illness. Lower parentification scores were obtained by children who
reported greater satisfaction with their support, said that they felt closer to their mothers,
and whose mothers reported they felt closer to their children. Implications of these findings
for preventative strategies and intervention are discussed and suggestions for future
research presented. To date, little attention has been paid to the impact of mothers' chronic
illness on their children. This study suggests that to reduce parentification in children whose
mothers are chronically ill, increased support needs to be offered at all levels of the family
system - the child, mother-child dyad, and the family as a whole
20/45
Evans, Subhadra & de Souza, Lorraine. (2008). Dealing with chronic pain: Giving voice to
the experiences of mothers with chronic pain and their children. Qualitative Health
Research, 18, 489-500. doi:10.1177/1049732308315433
Despite the substantial monetary, personal, and social cost of chronic pain, research into
the family life of sufferers is wanting. Parents dealing with chronic pain, as well as their
children, have been particularly neglected. Using qualitative interview data from 16 mothers
suffering from a variety of chronic pain conditions, and their 21 children, aged 6 to 12 years,
we explored the impact of maternal chronic pain on mothers and children. Consistent with a
gains-and-loss theory and the strengths perspective, the findings revealed both positive
and challenging aspects of pain. Despite the presence of risks-including maternal stress,
parenting difficulties, and children's distress-maternal chronic pain also provided
opportunities for growth in many families. The findings suggest that maternal chronic pain
can catalyze enhanced development as well as adversity. Researchers and clinicians
should be aware of the pitfalls facing families dealing with chronic pain, while remaining
Larissa Sauder
E
NV
A: Po
Fokus Auswirkung
Kinder
E
V
106
open to the possibility that some families might flourish.
21/38
Vallido, Tamara, Wilkes, Lesley, Carter, Bernie & Jackson, Debra. (2010). Mothering
disrupted by illness: A narrative synthesis of qualitative research. Journal of Advanced
Nursing, 66, 1435-1445. doi:10.1111/j.1365-2648.2010.05350.x
Aim: This paper is a report of a literature review of qualitative empirical research
investigating women's experiences of mothering disrupted by illness. Background: As a
primary identity, motherhood is endangered by illness. Illness can interfere with a woman's
ability to mother her child/children. Healthcare professionals regularly fail to acknowledge a
woman's dual identities of mother and patient. Data Sources: CINAHL, Medline, PsychInfo,
Scopus and Sociological abstracts were searched 1980-2009. Methods: A narrative
synthesis was used, with quality appraisal guided by the Critical Appraisal Skills
Programme method. Concepts were analysed thematically, explicating common
experiences of women disrupted in their mothering by illness. This allowed for both
descriptive and narrative synthesis to occur. Results: Thirteen papers were included in the
final review. Themes identified were: mechanism of disruption; reframing the mother role;
protecting the children; experiencing guilt or shame; problems with healthcare
professionals; and living to mother, mothering to live. Conclusion: Women disrupted in their
mothering by illness view themselves as a mother first and a patient second. Women found
themselves unsupported in their mothering role by healthcare professionals, and this may
have left them reluctant to broach difficulties they had relinquishing mothering duties when
ill. Nurses are well-positioned to support women in illness by acknowledging the importance
of their identity as mothers, offering them opportunities to discuss how illness is disrupting
their ability to mother, providing support to help them negotiate the social/emotional distress
experienced when mothering is disrupted and, where necessary, referring them to other
members of the healthcare team, such as social workers.
E
V
22/39
White, Carmel Parker, White, Mark B & Fox, Melissa A. (2009). Maternal fatigue and its
relationship to the caregiving environment. Families, Systems, & Health, 27, 325-345.
doi:10.1037/a0018284
For women with an autoimmune illness, fatigue can be a debilitating symptom that impacts
many aspects of their life. There is scant research on maternal fatigue and its impact on the
caregiving environment for either well women or women with chronic illnesses. The
objective of this study was to examine the role maternal fatigue played in the caregiving
environment, specifically in the mother’s experience of the daily hassles of parenting, the
discipline style she employed, and how she monitored her child’s whereabouts. Twohundred sixty-two mothers participated in this study: 103 mothers with multiple sclerosis
(MS), 68 mothers with rheumatoid arthritis (RA), and a comparison group of 91 well
mothers. Mothers completed questionnaires assessing their self-reported levels of fatigue,
depression, quality and quantity of sleep, parenting daily hassles, discipline styles, and
monitoring. After sleep, depression, and number of children were controlled for, fatigue
explained additional variance in predicting monitoring for all three groups of mothers.
Fatigue was also a significant predictor of parenting daily hassles for both well mothers and
mothers with RA, but not for mothers with MS. For mothers with MS, it was the covariates
(i.e., the number of children in the family and sleep quality and quantity) that were
predictive of parenting daily hassles. Several explanations for mothers with MS not being
as influenced by fatigue are discussed.
23/36
Shields, Marinna Banks. (2009). African-American mothers with serious and persistent
mental illness: Social support, parenting satisfaction, and parenting style.Dissertation
Abstracts International: Section B: The Sciences and Engineering, 69(9-B), 5313.
Research is limited regarding mothers with serious and persistent mental illness (SPMI).
This exploratory study used quantitative and qualitative measures to explore the social
support, parenting satisfaction, and parenting style of African-American women with SPMI.
This research explored perceptions of social support, parenting satisfaction, and parenting
styles for mothers with SPMI. Surveys were conducted with 33 African-American mothers
with SPMI enrolled in Programs of Assertive Community Treatment (PACT) in the District of
Columbia. These mothers completed the Multidimensional Scale of Perceived Social
Support (MSPSS) to evaluate social support, the Kansas Parenting Satisfaction Scale
(KPS) to evaluate parenting satisfaction, and the Parenting Practices Questionnaire (PPQ)
to evaluate parenting style. Additionally, 10 mothers participated in case studies to collect
qualitative data. The quantitative and qualitative portions of the study revealed similar
findings. In the quantitative portion of the study, the mothers completed surveys. The
mothers were found to have high scores in perceived social support, parenting satisfaction,
and authoritative parenting style characteristics, the most positive parenting style. The
relationship between social support from a special person was found to be statistically
A: Ph, ne
Larissa Sauder
Quantitative
Studie
A:?
107
significant to both parenting satisfaction as well as the authoritative parenting style. The
mothers participating in the case studies, the qualitative portion of the study, were also
found to have high levels of perceived social support, parenting satisfaction and
authoritative parenting characteristics. The qualitative research gave insight as to why
mothers perceived social support, parenting satisfaction, and authoritative parenting style
despite the fact that the majority of the mothers did not provide primary care for their
children. Future research needs to synthesize qualitative and quantitative research
encompassing both mental health and child welfare systems, and cultural knowledge. This
will begin to build the dialogue that enhances services that supports mothers with SPMI as
well as the caregivers of their children.
24/33
Chen, Yung-Chi. (2010). Parental involvement of chronically ill mothers and its impact on
the child's education. Dissertation Abstracts International Section A: Humanities and Social
Sciences, 70(8-A), 2886. Retrieved from
0-99030-235.
This study examined how maternal chronic illnesses may affect children's academic
functioning through parental involvement. Levels of maternal demands of illness were
measured in order to see if they affect the levels of parental involvement and children's
grades. Four research questions are addressed in this study. Do the maternal demands of
illness affect children's educational achievement? Do the maternal demands of illness
impact the extent of parental involvement? Does parental involvement of mothers with
chronic illness influence their children's academic achievement? Does positive parental
involvement mediate or moderate the impact of maternal chronic illness on children's
educational performance? One hundred fifty mothers diagnosed with Multiple Sclerosis
(MS), diabetes, cancer, HIV/AIDS, Myelodysplasic Syndrome, and Fibromyalgia and with a
child in middle school or high school (aged 10-18) participating in this study were recruited
from national organizations, clinics, and social support groups serving patients with chronic
illnesses. Participants completed a 184-item questionnaire that was composed of measures
of (1) parent demographic information, (2) parent medical information, (3) child
demographic information, (4) Demands of Illness Inventory (DOII), (5) parental self-efficacy,
(6) parental educational aspirations, (7) grade expectations, (8) school contact and
participation, (9) Parent Involvement in School Interview, (10) home supervision, and (11)
children's educational outcomes. Each participant was compensated ten dollars for
completing the questionnaire. Overall, the results suggest that the majority of students of
mothers with chronic illness were able to function adequately in terms of academic
achievement. However, children's academic functioning may be at risk when their mothers
experienced high levels of illness demands as a result of their chronic illness. Children's
grades were found negatively related to levels of demands of illness their mothers
experienced. This study also revealed that levels of demands of illness imposed on the
mothers with chronic illness and disruption in normal family functioning were negatively
related to parental self-efficacy in helping their children succeed in education. Moreover,
this study found that parental self-efficacy mediated the effects of maternal demands of
illness on children's academic achievement. Children of chronically ill mothers with higher
academic efficacy tended to do better academically than those of mothers with lower levels
of efficacy. Finally, among different forms of parental involvement, parental educational
aspirations and grade expectations were positively related to children's educational
performance in terms of grades.
25/25
Manoogian, Margaret M. (2011). My mother's bed. Health Communication, 26, 202-204.
doi:10.1080/10410236.2010.546772
In my current academic position, I teach a course on death and dying to a variety of
university students. Many are required to enroll as it relates to their chosen career paths,
and others are drawn to this particular class because of a significant loss lodged in their
hearts. I share with students my identity as a family gerontologist. I describe my scholarship
on intergenerational relationships as they are experienced in families challenged by
genocide, poverty, and chronic disease. I acknowledge the variety of losses that all of us
grieve on a daily basis that may or may not involve the death of someone we love. I outline
the ways that we may learn new skills when dealing with death, share stories about and the
meanings we ascribe to both living and dying, and reflect on the art of grieving as a
normative and often unrecognized path. My trained lens recognizes the bed as a
communication platform and a vehicle for creating family stories that link generations over
time. More importantly, I acknowledge my mother's bed for its gifts of life and grief,
connection and memory.
26/9
Poole, Janet L, Hare, K. Sena, Turner-Montez, Sabrina, Mendelson, Cindy & Skipper,
Betty. (2014). Mothers with chronic disease: A comparison of parenting in mothers with
Larissa Sauder
A: Po
Fokus Auswirkung
Kinder
A: Fachartikel
E
V
108
systemic sclerosis and systemic lupus erythematosus. OTJR: Occupation, Participation and
Health, 34(1), 12-19.
This study compared parenting ability in mothers with systemic sclerosis (SSc) and
systemic lupus erythematosus (SLE), two chronic, autoimmune, connective tissue diseases
that primarily affect women. Seventy-four mothers with SSc and 68 mothers with SLE
completed self-report questionnaires on demographic characteristics, pain, fatigue,
occupational performance, and parenting. Results showed that mothers with SSc were
slightly older, were more educated, and had decreased occupational performance. Mothers
with SLE had more pain and fatigue. There were no significant differences between
mothers with SSc and SLE who had children 5 years of age and younger. However, there
were significant differences between the mothers with SSc and SLE who had children aged
6 to 18 years on four items on the Parenting Disability Index: playing games with child,
getting up with child during the night, keeping child out of unsafe situations, and helping
child solve personal/social problems. These differences may be due to differences in the
levels of pain, fatigue, and occupational performance, possibly stemming from differences
in disease manifestations.
27/7
Limbo, Rana & Kobler, Kathie. (2014). Editorial. Illness, Crisis, & Loss, 22, 1-2.
doi:10.2190/IL.22.1.a
This editorial discusses, the articles which were featured in the current issue of Illness,
Crisis, & Loss. This theme issue on palliative care provides an array of articles, inspirational
pieces, commentary, and book reviews that demonstrate the breadth and depth of a field
that has grown and flourished around the world in the past 40 years. The featured articles
in this issue reflect the worldwide impact of palliative care, the intensity and intimacy of the
relationship between nurse and patient, the emotional sequelae of chronic disease, and
research involving palliative care for mothers whose babies were diagnosed during
pregnancy with a life-threatening condition. The authors of the moving narratives in the
Voices section bring the reader into the moments of providing palliative care that involve
reflection, spiritual meaning, and metaphor. The author of the commentary segment
summarizes the wide array of certifications available for palliative care clinicians,
emphasizing the importance of fostering continuing competence across all disciplines.
28/3
Farber, Ruth S, Kern, Margaret L & Brusilovsky, Eugene. (2015). Integrating the ICF with
positive psychology: Factors predicting role participation for mothers with multiple
sclerosis. Rehabilitation Psychology, 60, 169-178. doi:10.1037/rep0000023
Objective: Being a mother has become a realizable life role for women with disabilities and
chronic illnesses, including multiple sclerosis (MS). Identifying psychosocial factors that
facilitate participation in important life roles—including motherhood—is essential to help
women have fuller lives despite the challenge of their illness. By integrating
the International Classification of Functioning, Disability, and Health(ICF) and a positive
psychology perspective, this study examined how environmental social factors and positive
personal factors contribute to daily role participation and satisfaction with parental
participation.Method: One hundred and 11 community-dwelling mothers with MS
completed Ryff’s Psychological Well-Being Scales, the Medical Outcome Study Social
Support Survey, the Short Form-36, and the Parental Participation Scale. Hierarchical
regression analyses examined associations between social support and positive personal
factors (environmental mastery, self-acceptance, purpose in life) with daily role participation
(physical and emotional) and satisfaction with parental participation. One-way ANOVAs
tested synergistic combinations of social support and positive personal
factors. Results: Social support predicted daily role participation (fewer limitations) and
greater satisfaction with parental participation. Positive personal factors contributed
additional unique variance. Positive personal factors and social support synergistically
predicted better function and greater satisfaction than either alone. Conclusion: Integrating
components of the ICF and positive psychology provides a useful model for understanding
how mothers with MS can thrive despite challenge or impairment. Both positive personal
factors and environmental social factors were important contributors to positive role
functioning. Incorporating these paradigms into treatment may help mothers with MS
participate more fully in meaningful life roles.
151130_Search_I_2
Results: 1-21 of 21
1
Integrating the ICF with positive psychology: Factors predicting role participation for
mothers with multiple sclerosis. [References].
Farber, Ruth S; Kern, Margaret L; Brusilovsky, Eugene.
Rehabilitation Psychology
May 2015
2
Larissa Sauder
A: Fachartikel
E
V
Bemerkung
E
A:Po, kk
109
Parenting stress among caregivers of children with chronic illness: A systematic review.
[References].
Cousino, Melissa K; Hazen, Rebecca A.
Journal of Pediatric Psychology
Sep 2013
3
The role of parental and adolescent attributions in adjustment of adolescents with chronic
illness. [References].
Guion, Kimberly; Mrug, Sylvie.
Journal of Clinical Psychology in Medical Settings
Publication Date
Sep 2012
4
Improvements in maternal depression as a mediator of child behaviour change.
[References].
Hutchings, Judy; Bywater, Tracey; Williams, Margiad Elen; Lane, Eleanor; Whitaker,
Christopher J.
Psychology
Sep 2012
5
Fundamental assumptions, coping, and posttraumatic growth in parents of chronically ill
children.
Engelbert, Corinne N.
Dissertation Abstracts International: Section B: The Sciences and Engineering
2012
6
Reliability and validity of the PedsQLTM Multidimensional Fatigue Scale in Japan.
[References].
Kobayashi, Kyoko; Okano, Yoshiyuki; Hohashi, Naohiro.
Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment,
Care & Rehabilitation
Sep 2011
7
Parental functioning in the context of adolescent chronic pain: A review of previously used
measures. [References].
Jordan, Abbie; Eccleston, Christopher; Crombez, Geert.
Jul 2008
8
Toward conceptual clarity in a critical parenting construct: Parental monitoring in youth with
chronic illness. [References].
Ellis, Deborah A; Templin, Thomas N; Naar-King, Sylvie; Frey, Maureen A.
Sep 2008
9
Progressivity and participation: Children's management of parental assistance in paediatric
chronic pain encounters. [References].
Clemente, Ignasi.
Sociology of Health & Illness
Sep 2009
10
Utilizing role theory to help employed parents cope with children's chronic illness.
[References].
Major, Debra A.
Health Education Research
Feb 2003
11
Parents of children with chronic disabilities: The gratification of caregiving. [References].
Schwartz, Chaya.
Families in Society
Oct-Dec 2003
12
Parents are not homogeneous.
Laws, Tom A.
BMJ: British Medical Journal
May 2003
Larissa Sauder
A:Po, kk
A: Po
Fokus Kinder
A:Po, kk
A: Ph, ne
A:Po, kk
A:Po, kk
A:Po, kk
A:Po, kk
A:Po, kk
E
110
13
Managing communication with young people who have a potentially life threatening chronic
illness: Qualitative study of patients and parents. [References].
Young, Bridget; Dixon-Woods, Mary; Windridge, Kate C; Heney, David.
BMJ: British Medical Journal
Feb 2003
14
Fathering a child living with HIV/AIDS: Psychosocial adjustment and parenting stress.
[References].
Wiener, Lori S; Vasquez, Mary Jo P; Battles, Haven B.
Sep 2001
15
Perceived role restriction and depressive symptoms in mothers of children with chronic
health conditions. [References].
Johnson Silver, Ellen; Bauman, Laurie J; Weiss, Elisa S.
Journal of Developmental and Behavioral Pediatrics
Oct 1999
16
Parents' reports of "tricks of the trade" for managing childhood chronic illness.
Gallo, Agatha M; Knafl, Kathleen A.
Journal of the Society of Pediatric Nurses
Jul-Sep 1998
17
Generative ingenuity in fatherwork with young children with special needs.
Brotherson, Sean E; Dollahite, David Curtis.
Generative fathering: Beyond deficit perspectives.
1997
18
Maternal perceptions of parenting infants with congenital heart disease: Implications for
early intervention.
Meyers, Barbara Berke.
Dissertation Abstracts International: Section B: The Sciences and Engineering
Nov 1997
19
Sexual behavior among adolescents reporting chronic conditions: A French national survey.
Choquet, Marie; Fediaevsky, Laurence Du Pasquier; Manfredi, Robert.
Journal of Adolescent Health
Jan 1997
20
Parents of children with rheumatic disease as peer counselors.
DeNardo, Bethany A; Stebulis, Judith A; Tucker, Lori B; Schaller, Jane G.
Arthritis Care & Research
Jun 1995
21
When parenting becomes caregiving: Caring for the chronically ill child.
Turner-Henson, Anne; Holaday, Bonnie; Swan, James H.
Family & Community Health: The Journal of Health Promotion & Maintenance
Jul 1992
1/12
Parents are not homogeneous.
Laws, Tom A. BMJ: British Medical Journal May 2003
AB Comments on the B. Young et al study (see record 2003-01573-002) which examined
young people's and parents' accounts of communication about cancer in childhood. The
present author notes that Young et al offer an important insight into the rub between parental
desires to protect their offspring from unpleasant news while at the same time recognizing
the child's autonomy, however, it is argued that the paper falls short in 2 respects. First,
although Young et al say they did not address the influence of sex, it is argued that this factor
cannot be simply discarded without explanation. Second, the voices of the mothers and
fathers were aggregated into a single factor, that of the "parent". It is argued that this is
contrary to literature exploring relations between the sexes in families, and that a verbatim
account of interparent discussions as to why health information should be withheld would be
a valuable prelude to the Young et al article.
Larissa Sauder
A:Po, kk
A: Po
Väter
A:Po, kk
A:Po, kk
A:Po, kk
A:Po, kk
A:Po
Keine Mütter
A:Po, kk
A:Po, kk
Bemerkung
A: Ph, ne
111
2/1
Integrating the ICF with positive psychology: Factors predicting role participation for mothers
with multiple sclerosis. [References].
Farber, Ruth S; Kern, Margaret L; Brusilovsky, Eugene. Rehabilitation Psychology May 2015
AB Objective: Being a mother has become a realizable life role for women with disabilities
and chronic illnesses, including multiple sclerosis (MS). Identifying psychosocial factors that
facilitate participation in important life roles-including motherhood-is essential to help women
have fuller lives despite the challenge of their illness. By integrating the International
Classification of Functioning, Disability, and Health (ICF) and a positive psychology
perspective, this study examined how environmental social factors and positive personal
factors contribute to daily role participation and satisfaction with parental participation.
Method: One hundred and 11 community-dwelling mothers with MS completed Ryff's
Psychological Well-Being Scales, the Medical Outcome Study Social Support Survey, the
Short Form-36, and the Parental Participation Scale. Hierarchical regression analyses
examined associations between social support and positive personal factors (environmental
mastery, self-acceptance, purpose in life) with daily role participation (physical and
emotional) and satisfaction with parental participation. One-way ANOVAs tested synergistic
combinations of social support and positive personal factors. Results: Social support
predicted daily role participation (fewer limitations) and greater satisfaction with parental
participation. Positive personal factors contributed additional unique variance. Positive
personal factors and social support synergistically predicted better function and greater
satisfaction than either alone. Conclusion: Integrating components of the ICF and positive
psychology provides a useful model for understanding how mothers with MS can thrive
despite challenge or impairment. Both positive personal factors and environmental social
factors were important contributors to positive role functioning. Incorporating these paradigms
into treatment may help mothers with MS participate more fully in meaningful life roles.
E
V
151202_Search_I_4
Bemerkung
Results: 1-11 of 11
1
E
Integrating the ICF With Positive Psychology: Factors Predicting Role Participation for
Mothers With Multiple Sclerosis
Farber, Ruth S; Kern, Margaret L; Brusilovsky, Eugene
2
A: Po, keine
Accessing heritage culture resources when facing chronic illness among low acculturated
Mütter
Hispanics.
Ireland, Olga Martha: Northcentral U., US
3
A: Po, keine
Down the rabbit hole': Enhancing the transition process for youth with cystic fibrosis and
Mütter
congenital heart disease by re-imagining the future and time.
Moola, F. J. Norman, M. E
4
E
Mothering disrupted by illness: A narrative synthesis of qualitative research. [References].
Vallido, Tamara; Wilkes, Lesley; Carter, Bernie; Jackson, Debra.
5
A: Po, keine
Mütter
Reproductive decisions for women with HIV: Motherhood's role in envisioning a future. [References]
Barnes, Donna B; Murphy, Sheigla.
6
Chronical illness and maternity: Life conditions, quality of life and coping in women with
multiple sclerosis
Twork, Sabine; Wirtz, Markus; Schipper, Sabine; Klewer, Jorg; Bergmann, Antje; Kugler,
Joachim.
7
'When you have children, you're obliged to live': Motherhood, chronic illness and biographical
disruption.
Wilson, Sarah.
8
Chapter: Motherhood and mental illness.
Seneviratne, Trudi; Conroy, Sue.
9
The experience of motherhood in mothers of children with and without chronic disease in the
second year of life.
Castro, Elisa Kern; Piccinini, Cesar Augusto.
10
The experience of motherhood in women with severe and enduring mental illness.
Dipple, Heather; Smith, Susan; Andrews, Harry; Evans, Barbara.
Larissa Sauder
E
E
E
A: Po, kk
E
112
11
Being a mother and living with asthma: An exploratory analysis of discourse.
Radtke, H. Lorraine; Mens-Verhulst, Janneke.
Eingeschlossene Titel -> Abstracts 11<6<4
1/11
Being a mother and living with asthma: An exploratory analysis of discourse.
Radtke, H. Lorraine; Mens-Verhulst, Janneke.
Although contemporary scholarship on the psychology of women has recognized the
significance of motherhood for women, this positioning has received little attention from
researchers interested in women and chronic illness. In this article, the authors begin to fill
this gap by exploring the complexity of being a mother when women are chronically ill. They
focus on mothers with asthma and, adopting a discursive approach, analyze three interviews
with asthmatic mothers using discourse analysis to explore how they negotiate their
identities. The women were white, Dutch autochthones, who ranged in age from 31 to 60 yrs.
Two were diagnosed with asthma in early childhood and one was diagnosed at age 40. The
authors argue that being a mother is relevant to how women live with asthma.
2/10
The experience of motherhood in women with severe and enduring mental illness.
Dipple, Heather; Smith, Susan; Andrews, Harry; Evans, Barbara.
This study considers the experience of motherhood of women who are patients of the
rehabilitation services in Leicester. Data were collected from case notes, by semi-structured
interviews with all women identified as mothers, and by enquiries with key workers on
demographic characteristics, number of children, contact with and separations from these
children, and other relationships. 58 women (aged 24-87 yrs) had 122 children. Of the
mothers, 68% were permanently separated from at least 1 child before the age of 18 yrs, and
often had little or no subsequent contact with them. There was also attrition of other important
relationships. There was scanty documentation about these issues in medical notes. The
authors conclude that many women in long-term psychiatric care have experienced multiple
losses. Clinicians should be mindful of this.
3/8
Chapter: Motherhood and mental illness.
Seneviratne, Trudi; Conroy, Sue.
from the chapter) Pregnancy and childbirth have an enormous combined psychological and
physiological effect on a woman's life. Historically, physicians have postulated a link between
childbirth and mental illness. More recently, studies have shown that childbearing is
associated with a marked increase in the incidence and prevalence of psychiatric disorder
but exact causal mechanisms remain unclear. This chapter will first, explore how childbirth
contributes to the onset of these psychiatric disorders and secondly, the extent to which
childbirth affects women with a history of a chronic mental illness. Such disorders highlight
the need for specialist perinatal psychiatric services, which deploy a multidisciplinary team
and individualized treatment plans, as described in the final section of this chapter.
4/7
'When you have children, you're obliged to live': Motherhood, chronic illness and biographical
disruption.
Wilson, Sarah.
Recent work on biographical disruption has emphasised the critical importance of timing and
context to the understanding of the effects of illness on identity. This paper takes a different
approach by examining the inter-relationship between illness and key sources of identity, in
this instance HIV infection and motherhood. It is argued that, viewed in this light,
intense threat which may be posed to key identities by chronic, potentially fatal illnesses, and
the fundamental re-working of such identities occasioned by such threats. With reference to
the empirical study on which this paper draws, it is shown that the twelve respondents'
emphasis on their need to survive and to protect their children, represented a fundamental
re-formulation of their identities as mothers and, therefore, a type of biographical disruption
while paradoxically also containing elements of biographical reinforcement. It is further
argued that the incorporation of such key identities into the analysis problematises work that
suggests that biographical disruption is less relevant to those who have experienced difficult
lives, while also highlighting the need to take greater account of gender and caring
responsibilities in further work in this field.
5/6
Chronical illness and maternity: Life conditions, quality of life and coping in women with
multiple sclerosis
Twork, Sabine; Wirtz, Markus; Schipper, Sabine; Klewer, Jorg; Bergmann, Antje; Kugler,
Joachim
Aim: Research on life circumstances, quality of life (QOL) and coping behavior in mothers
with multiple sclerosis (MS). Method: Anonymous standardised questionnaire sent to 7050
Larissa Sauder
E
E
D
V
A:Ph: ne
Fokus Trennung
Kind
A: Ph, ne
E
D
V
E
V
113
members of a section of the German MS Association (response rate 44.8%). Comparison of
482 mothers with MS (children aged < 18 years) with 607 childless women with MS. Results:
No statistically significant differences concerning age, MS course, complaints or number of
exacerbations. Mothers with MS more frequently had a relationship, a higher monthly net
income, were less employed, EDSS-score was lower and disease duration shorter. In QOL
mothers with MS showed better social aspects even after multivariate adjustment for
sociodemographic and disease-related variables. Influencing parameters on the social area
of QOL were employment status, age, monthly household net income and disability. In their
coping behavior mothers tended more to "religiosity/search for sense in life". Conclusion:
There were several differences in sociodemographic data, QOL and coping behavior factors
between mothers and childless women with MS. However, if motherhood itself has an
influence on QOL and coping can not be derived from our data but there are some hints
thatmotherhood seems to be no potential problem for living with the disease. Further
research upon this topic is needed.
6/4
Mothering disrupted by illness: A narrative synthesis of qualitative research. [References].
Vallido, Tamara; Wilkes, Lesley; Carter, Bernie; Jackson, Debra.
Aim: This paper is a report of a literature review of qualitative empirical research investigating
women's experiences of mothering disrupted by illness. Background: As a primary identity,
motherhood is endangered by illness. Illness can interfere with a woman's ability to mother
her child/children. Healthcare professionals regularly fail to acknowledge a woman's dual
identities of mother and patient. Data Sources: CINAHL, Medline, PsychInfo, Scopus and
Sociological abstracts were searched 1980-2009. Methods: A narrative synthesis was used,
with quality appraisal guided by the Critical Appraisal Skills Programme method. Concepts
were analysed thematically, explicating common experiences of women disrupted in their
mothering by illness. This allowed for both descriptive and narrative synthesis to occur.
Results: Thirteen papers were included in the final review. Themes identified were:
mechanism of disruption; reframing the mother role; protecting the children; experiencing
guilt or shame; problems with healthcare professionals; and living to mother, mothering to
live. Conclusion: Women disrupted in their mothering by illness view themselves as a mother
first and a patient second. Women found themselves unsupported in their mothering role by
healthcare professionals, and this may have left them reluctant to broach difficulties they had
relinquishing mothering duties when ill. Nurses are well-positioned to support women in
illness by acknowledging the importance of their identity as mothers, offering them
opportunities to discuss how illness is disrupting their ability to mother, providing support to
help them negotiate the social/emotional distress experienced when mothering is disrupted
and, where necessary, referring them to other members of the healthcare team, such as
social workers.
7/1
Integrating the ICF With Positive Psychology: Factors Predicting Role Participation for
Mothers With Multiple Sclerosis
Farber, Ruth S; Kern, Margaret L; Brusilovsky, Eugene
AB Objective: Being a mother has become a realizable life role for women with disabilities
and chronic illnesses, including multiple sclerosis (MS). Identifying psychosocial factors that
facilitate participation in important life roles-including motherhood-is essential to help women
have fuller lives despite the challenge of their illness. By integrating the International
Classification of Functioning, Disability, and Health (ICF) and a positive psychology
perspective, this study examined how environmental social factors and positive personal
factors contribute to daily role participation and satisfaction with parental participation.
Method: One hundred and 11 community-dwelling mothers with MS completed Ryff's
Psychological Well-Being Scales, the Medical Outcome Study Social Support Survey, the
Short Form-36, and the Parental Participation Scale. Hierarchical regression analyses
examined associations between social support and positive personal factors (environmental
mastery, self-acceptance, purpose in life) with daily role participation (physical and
emotional) and satisfaction with parental participation. One-way ANOVAs tested synergistic
combinations of social support and positive personal factors. Results: Social support
predicted daily role participation (fewer limitations) and greater satisfaction with parental
participation. Positive personal factors contributed additional unique variance. Positive
personal factors and social support synergistically predicted better function and greater
satisfaction than either alone. Conclusion: Integrating components of the ICF and positive
psychology provides a useful model for understanding how mothers with MS can thrive
despite challenge or impairment. Both positive personal factors and environmental social
factors were important contributors to positive role functioning. Incorporating these paradigms
into treatment may help mothers with MS participate more fully in meaningful life roles.
Larissa Sauder
E
V
E
V
114

und chronisch Kranksein - ZHAW digitalcollection

Transcription

Similar documents

14.04.2011 1,69 MB

Dipl.arbeit Eva Vilits 09_2009 - Veterinärmedizinische Universität

FHA Frauenheilkunde aktuell

Kassiber_8 - Das Haus der Renunziation

Teil 6: Relationale Algebra

Die Facharbeit eine telekommunikative Lernsequenz Autor: Bernd

De nos jours, chacun fait ce qu`il veut - edoc

Auch als ePaper unter www.vg