Reducing caregiver stress with internet

Review
Reducing caregiver stress with internet-based
interventions: a systematic review of open-label
and randomized controlled trials
Chunling Hu, Simon Kung, Teresa A Rummans, Matthew M Clark, Maria I Lapid
Department of Psychiatry and
Psychology, Mayo Clinic,
Rochester, Minnesota, USA
Correspondence to
Dr Simon Kung, Department of
Psychiatry and Psychology,
Mayo Clinic, 200 First St SW,
Rochester, MN 55905, USA;
[email protected]
Received 24 March 2014
Revised 4 June 2014
Accepted 25 July 2014
ABSTRACT
Objective The high level of stress associated with
caring for others with medical conditions has been
recognized for some time. Reducing caregiver stress can
improve caregiver quality of life as well as improve the
care they provide to loved ones. This systematic review
assesses the effectiveness of internet-based interventions
to decrease caregiver stress.
Materials and methods A comprehensive literature
search of Ovid MEDLINE (1946–2013), Embase (1988–
2013), PsycINFO (1987–2013), and CINAHL was
conducted using terms related to caregiver and internetbased interventions. Internet-based interventions
involving informal caregivers in an open-label or
randomized controlled trial setting were included. A pair
of raters independently reviewed all published abstracts.
Data regarding participants, interventions, and outcomes
were extracted and, for randomized trials, methodology
quality was also reviewed.
Results Eight open-label trials met the review criteria:
three showed positive benefit in reducing caregiver
stress, four were partially positive (some outcomes
positive, others negative), and one was a negative study.
Sixteen randomized trials met the review criteria: six
showed positive benefit, five were partially positive, and
five were negative. There were no clear patterns as to
the variables (such as study duration and complexity of
intervention) associated with better outcomes, although
earlier studies typically had more negative outcomes.
Discussion Internet-based interventions were mostly
effective in reducing aspects of caregiver stress and
improving their well-being. Further studies to assess
outcomes for caregivers and their recipients’ health,
different technology delivery methods, and the cost of
such interventions are needed.
more apparent that caregiving for loved ones is burdensome, associated with fatigue, and impacts the
health of the caregivers, therefore interventions are
being designed to help address those concerns.3–7
Training and educational programs have been
developed to provide support for the caregiver.
These interventions have reduced caregiver burden
and depression and improved well-being.6 8
However, due to the demands of caregiving, many
of these face-to-face programs are inaccessible to
caregivers. Therefore, technology-based interventions utilizing telephones, mobile phones, videophones, computers, and the internet are being
developed to try to improve the caregiver’s ability
to access help.4
In 2012 it was estimated that there were 2.4
billion internet users worldwide, with 274 million
in North America.9 Internet usage, which provides
people with abundant information and convenient
ways of communicating, has become a regular activity of daily life. Internet-based programs have been
shown to help people make health improvements
such as smoking cessation or weight loss.10 11 Such
programs have the advantage of being accessible
24 h a day and 7 days a week.
Given that internet-based applications have been
used to benefit patients with chronic illness, our
research question was to find similar applications
but with the target audience being caregivers.
Surveying this field can help guide future application development. In this systematic review we
identify open-label trials and randomized controlled trials (RCTs) of internet-based interventions
to reduce caregiver burden.
MATERIALS AND METHODS
OBJECTIVE
To cite: Hu C, Kung S,
Rummans TA, et al. J Am
Med Inform Assoc Published
Online First: [ please include
Day Month Year]
doi:10.1136/amiajnl-2014002817
Non-professional caregivers, also known as informal
caregivers who are usually family members, play an
important role in caring for people who cannot care
for themselves. There were an estimated 65.7
million informal caregivers in the USA in 2009, of
which 66% (43.5 million) took care of an adult
older than 50 years.1 It is expected that informal
caregiving will be the largest source of long-term
care services in the USA, increasing by 85% from
2000 to 2050.2
The roles and responsibilities of caregivers are
complicated. Caregiving responsibilities are usually
financially uncompensated, require the caregiver to
juggle the responsibilities with other demands on
their time, and often leave the caregiver exhausted
and at risk for health problems. It is becoming
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
The Cochrane Handbook for Systematic Reviews
of Interventions guidelines was used.12
Inclusion criteria
We included studies which met the following predetermined criteria: (1) non-professional (informal)
caregivers of patients with chronic health problem;
(2) internet-based technology delivering interventions to caregivers; (3) interventions designed to
address caregiver stress, burden, or quality of life
(QOL); and (4) open-label trials or RCTs published
in peer-reviewed English language journals.
Studies which did not incorporate formal measurement of caregiver stress, burden, or QOL were
excluded from the summary tables but noted in the
text. Studies which were not truly internet-based or
web browser-based were also excluded, such as the
older studies which used videophone technology or
1
Review
older telephone modem connections, or studies which used
only videoconferencing technology which was not internetbased. Studies which provided online education or information
only, without any component of interactivity such as a discussion forum, were excluded because we wanted to assess internetbased studies which incorporated features of interaction.
Two reviewers screened abstracts and, for those abstracts
which appeared to meet the inclusion criteria, the full-text
article was obtained and reviewed. Disagreements regarding
whether an article met our inclusion criteria were resolved by
applying the inclusion criteria again to the article and the two
reviewers arriving at a consensus decision after further discussion. No numerical methods such as inter-rater scores were
used.
Search strategy
The Ovid MEDLINE (1946 to September 2013), Embase (1988
to September 2013), PsycINFO (1987 to September 2013), and
CINAHL databases were used. Search terms were caregivers
AND evaluation/intervention AND technology OR blogging OR
electronic mail OR internet OR software OR user-computer
interface OR web based OR mobile OR cellular phone OR
social media OR smartphone OR interactive OR Facebook OR
twitter OR Tablet OR iPad OR distance learning OR Ehealth
OR Online OR on-line OR Skype OR webcam OR Videophone
OR Telemedicine OR Wireless OR wi-fi. Two reviewers (CH
and SK) independently screened the article abstracts obtained
from the search, and articles meeting the inclusion criteria were
retrieved for full-text review.
(performance and detection bias); (d) whether incomplete
outcome data might affect the true study outcomes (attrition
bias); (e) whether there was selective reporting (reporting bias);
and (f ) the possibility of other bias. As recommended by the
Cochrane Collaboration, we avoided the use of an overall
summary category such as ‘high quality’ or ‘low quality’ to
describe each study.
Data extraction
We extracted the following data: (1) participants (type of health
problem of the care recipient, the number of participants in the
intervention and control and other groups, caregiver mean age
and gender; (2) intervention description (the intervention and
comparison group(s) and study duration); (3) outcome measures
and measurement timeline; and (4) study results (the effectiveness of intervention).
RESULTS
Two authors (CH and SK) independently screened 1474 article
abstracts obtained from the search. Eleven abstracts were identified through bibliography and other search techniques. Of these
combined 1485 abstracts, 162 reported on the same intervention and were excluded and a further 1014 did not meet the
inclusion criteria. Three hundred and nine articles were
retrieved for full-text review, resulting in 8 open-label trials and
16 RCTs included in the final analysis (figure 1).
Table 1 presents the open-label studies which evaluated an
intervention without a comparison group while table 2 contains
those open-label studies which included a comparison group.
Tables 3–6 summarize the RCTs.
Risk of bias assessment
The Cochrane Risk of Bias Tool was used for RCTs as we felt it
has less meaning for open-label trials.12 Two reviewers (CH and
SK) assigned ratings of ‘low,’ ‘high,’ and ‘unclear’ risk of bias
for the following categories: (a) the adequacy of the sequence
generation and randomization (selection bias); (b) the concealment of the treatment allocation (selection bias); (c) the
adequacy of blinding of participants and research staff
Participants
The medical conditions of the care recipient ( patient) included
cancer,30–32 dementia/neurodegenerative disease,13 16 22–24 28
pediatric traumatic brain injury,18–20 stroke,25 27 anorexia
nervosa,34 35 schizophrenia,21 33 heart transplantation,17 frail
elderly,14 hip fracture,15 infant/toddler sleep problem,36 and
fetal alcohol spectrum disorders.37 Due to the nature of the
Figure 1 Preferred Reporting Items
for Systematic Reviews and
Meta-Analyses (PRISMA) flow diagram.
RCT, randomized controlled trial.
2
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
Review
Table 1
Summary of open-label studies of internet-based interventions without a comparison group for caregivers
Year/study
Participants
Interventions
Outcome measures
Results
Comments
2004/Glueckauf et al13 21 caregivers of dementia
patients.
Mean age 64.4; 86%
female.
Two groups were
analyzed as one large
group: 15 received
internet-based class
instruction, 6 received
telephone-based
instruction
2008/Torp et al14
19 caregivers of frail
elderly people.
Mean age 73; 42%
female
Alzheimer’s Caregiver
Support Online website
including information,
webcast sessions, discussion
board, and chat room.
Duration: 16 weeks
Caregiving Self-Efficacy
Scale, Stress-related
Growth Scale, Caregiver
Appraisal Inventory.
Timeline: pretest,
post-test
Positive results. Significant
increases in self-efficacy,
decrease in caregiver burden
Webcast sessions were
designed to reduce caregiver
stress. Telephone-based
instruction provided as a
backup to internet-based
instruction or when caregivers
did not have internet access.
Both groups were similar for
baseline measures so were
combined for data analysis
Online classes, discussion
board, educational
information, videophone.
Duration: 18 months
Social contacts, burden
of care, knowledge,
stress and mental health.
Timeline: baseline, 7,
12 months
2012/Nahm et al15
27 dyads of hip fracture
caregiver and care
recipient.
Caregivers mean age
55.5; 67% female
Web-based Online Hip
Fracture Resource Center
(OHFRC) with learning
modules and discussion
board.
Duration: 8 weeks
2012/Lorig et al16
60 family caregivers of
dementia patients.
Mean age 57.2; 81.7%
female
Intervention: Building Better
Caregivers, an internet-based
skills enhancement workshop
including interactive learning
center, bulletin boards,
individualized problem
behavior diaries and exercise
logs, communications.
Duration: 6 weeks
Mixed results. No significant
improvement in stress and
mental health but significantly
improved contact with family
and friends and improved social
support and knowledge
Caregiver Strain Index,
Negative results for mental
Rhode Island Stress and health outcomes. Improvement
Coping Inventory, care
in caregiver stress, coping, and
recipient outcomes,
computer-mediated social
eHealth literacy, website support was not statistically
usability.
significant. However, there was
Timeline: pre- and
improvement in knowledge
post-intervention
about caring for patients
Health indicators, health Positive study. Significant
reduction in caregiver burden,
behaviors, healthcare
utilization, including Zarit depression, pain, stress
Burden Inventory,
Caregiver Strain Index.
Timeline: baseline, 3
months
Somewhat difficult to recruit
caregivers and resulting
participants tended to be
younger caregivers
Successfully able to reach
rural caregivers
Table 2 Summary of open-label studies of internet-based interventions with a comparison group for caregivers
Year/study
2004/Dew et al
17
2009/Wade et al18
Participants
Interventions
Outcome measures
Results
Comments
Intervention group: 20
patients and caregivers
of heart transplant
patients. Mean age 45;
85% female.
Control: Historic control
group of 40 patients
and caregivers. Mean
age 65; 85% female
Nine families of
children aged 3–8 with
traumatic brain injury.
Mean age and gender
unspecified
Intervention: Online discussion
group, stress and medical
regimen management,
communication with transplant
team, educational information
as well as usual care.
Control: Usual care.
Duration: 4 months
Depression, anxiety,
anger-hostility (using
Symptom Checklist-90),
quality of life (Short
Form-36), medication
compliance.
Timeline: baseline and
post-test
Mixed results. Caregiver
anxiety and hostility
symptoms declined
significantly, but not
depression. Only the social
functioning domain of QOL
significantly improved
Intervention for patients
and caregivers. Seems to
be an ideal/model design.
Modules included working
at user’s own pace and
homework
Intervention: web-based video
education and coaching to
increase positive parenting
skills and to improve caregiver
stress
Duration: 10 core session
Intervention: online multifamily
group program including
discussion board, online chat,
and educational materials.
Control: usual care.
Duration: 1 year
Dyadic Parent-Child
Interaction Coding
System-III (DPICS-III),
Eyberg Child Behavior
Inventory (ECBI)
Mixed results. Significant
improvements in parenting
behaviors and no significant
improvement (but a trend
noted) for reducing problem
behaviors
Mixed results. No significant
improvement of caregiver
distress in online versus
control group. Significant
improvement of relationship
stress in online group over
time
Also refer to related
randomized interventions
by Wade et al19 20
2010/Glynn et al21
42 caregivers of
schizophrenia.
26 in intervention
group (mean age 57,
77% female), 16 in
control group (mean
age 53.8, 94% female)
2011/Marziali and
Garcia22
91 caregivers of
dementia patients,
40 in chat group, 51 in
video group.
Mean age 65.5; 72%
female
Internet-based chat support
group, duration: 6 months.
Internet-based video
conferencing support group,
duration: 10 weeks
Caregiver distress
measured by Brief
Symptoms Inventory,
relationship stress between
patient and caregiver,
perceived social support
Timeline: baseline, 6, and
12 months
Caregiver distress, health
status, social support,
service utilization.
Timeline: pretest, post-test
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
Recruitment was
challenging, with resulting
small number of
participants
Positive results. Video group
showed significantly greater
improvement in mental health
status, self-efficacy,
neuroticism, social support,
and lower stress response
3
4
Review
Table 3
Summary of randomized controlled trials of internet-based interventions for caregivers of patients with neurodegenerative disease or stroke
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
Year/study
Participants
Interventions
Outcome measures
Results
Comments
2005/Beauchamp et al23
299 family caregivers of patients with
dementia (150 in intervention group, 149
in control group).
Mean age 46.9; 73% female
66 caregivers of patients with
neurodegenerative disease (Alzheimer’s,
stroke-related dementia, Parkinson’s):
34 in intervention group and 32 in
control.
Mean age 67.8; 76% female
Caregivers had an average
exposure of 32.2 min (SD 43.5,
range 1–368) to the website
program over the 30-day study
duration
Provided a qualitative analysis of
group discussion themes
2009/Pierce et al25
73 caregivers of patients with stroke
(36 in intervention group and 37 in
control group).
Mean age 55; 75% female
Stress (primary outcome), self-efficacy,
intention to get support, ways of coping,
caregiver strain, caregiver gain, depressive
symptoms, state anxiety.
Timeline: baseline and post-intervention
Health Status Questionnaire 12 (HSQ-12),
Center for Epidemiologic Studies-Depression
(CES-D), stress related to activities of daily
living (ADL), Revised Memory and Behavior
Problems Checklist, Multidimensional Scale of
Perceived Social Support.
Timeline: baseline and 6 months
Depression (measured by CES-D), Satisfaction
with Life Scale, and healthcare utilization.
Timeline: baseline and every 3 months
Intervention significantly improved 7 of 8
outcomes (all except ways of coping)
2006/Marziali et al24
Caregiver’s Friend website with
text and video modeling
positive caregiving strategies.
Control: usual care.
Duration: 30 days
Caring for Others website and
22 weeks of videoconferencing
support groups.
Control: no intervention.
Duration: 6 months
2012/Smith et al27
32 spouse caregivers of stroke survivors
(15 dyads in intervention group and 17
dyads in control group).
Mean age 55.3 in intervention group and
54.9 in control group; 100% female
2013/Kajiyama et al28
150 dementia caregivers (75 in
intervention group, 75 in control group).
Mean age 55 in intervention group, 57 in
control. Gender: 83% female in
intervention group, 86% in control group
201 family caregivers of adult patients
with traumatic brain injury (104 in
intervention group, 97 in control group).
Mean age not specified; 86.4% female in
intervention group, 88.4% female in
control group
2013/McLaughlin et al29
Caring∼Web with
informational and email forum
for questions or discussion,
accessed by internet TV.
Control: no internet access.
Duration: 1 year
Website with professional
guide, educational videos,
online chat sessions, email and
message board, and resource
room.
Control: resource room only.
Duration: 11 weeks + 1 month
follow-up
iCare Stress Management
e-Training Program;
Control: Education/information
only
Duration: 3 months
Brain Injury Partners (BIP)
website for advocacy,
improving communication skills
with patients, and resources
for families.
Control: Similar website but
more passive information and
focused on legislative
advocacy.
Duration: 3 months
Depression (primary outcome, measured by
CES-D), Patient Health Questionnaire-9
(PHQ-9), Mastery Scale, Self-Esteem Scale,
Social Support Survey, Credibility/Expectancy
Questionnaire.
Timeline: baseline, post-intervention
(11 weeks), and 1 month follow-up
No differences in any measure between
intervention and control from baseline to
follow-up. However, within the intervention
group (not comparing to control), there was
a greater reduction (change from baseline to
follow-up) of two stress measures (related to
ADLs and managing difficult behaviors)
No significant differences in depression or
life satisfaction between the two groups or
over time. However, patient emergency
department visits and hospital readmissions
were significantly fewer in the intervention
group
Caregivers in the intervention group reported
significantly lower depression at both
post-intervention and 1 month follow-up
compared with control group
Perceived Stress Scale, level of bother due to
disruptive behaviors, CES-D (depression),
Perceived Quality of Life.
Timeline: 3 months
Change in perceived stress was significant
for the iCare intervention group but not for
the other outcome measures
Satisfaction with Life Scale. Likert scales for
knowledge, skill application, and behavioral
intention.
Timeline: pretest, post-test, and 3 months
No significant improvement with life
satisfaction but intervention group had
significantly increased application,
knowledge and attitudes
A related 2008 study by Steiner
using the same Caring∼Web
system and a control group found
no significant difference between
intervention and control for
caregiver emotional support26
Negative study
Review
Table 4 Summary of randomized controlled trials of internet-based interventions for caregivers of patients with cancer
Year/study
Participants
Interventions
Outcome measures
Results
Comments
2002/Farnham et al30
49 caregivers of bone
marrow transplant patients
and 35 patients:
21 in intervention group, 25
in control.
Mean age 49; 60% female
Computer usage patterns
and quality of life.
Timeline: baseline and 28,
56, 84 days (56 and 84 days
results not reported)
No change in quality of
life (life satisfaction,
stress, and social
support)
Participants were living
up to 1 month in the
Hutch outpatient
housing facility and, at
baseline, 60% overall
had internet access
2012/Namkoong et al31
246 non-small cell lung
cancer patient-caregiver
dyads,
124 in intervention group,
122 in control.
Mean age 55.6, 68.3%
female
Bonding (5-item scale) with
other caregivers; coping
strategies (active behavior,
positive reframing, and
instrumental support).
Timeline: baseline and every
2 months, with 6-month
outcomes reported
Intervention had a
significant positive
effect on caregivers’
perceived bonding and
coping strategies
Secondary analysis
2013/Chih et al32
235 advanced stage lung,
breast, and prostate cancer
patient-caregiver dyads: 118
in intervention group, 117 in
comparison group.Mean age
56, 64% female
HutchWorld social
interactive community and
internet information access.
Control: could use any
self-provided computer
facilities.
Duration: 3 months
Comprehensive Health
Enhancement Support
System (CHESS) website for
information,
communication, and
support such as discussion
groups.
Control: laptop computer
with internet access if
needed, list of cancer care
websites.
Duration: 6 months
Intervention group: CHESS
with online clinician report
(CR) to alert clinicians to
severe patient symptoms.
Comparison group: CHESS
only.
Duration: 12–24 months
Caregiver preparedness
(subscale of Family Care
Inventory), Caregiver
Physical Burden (subscale of
Caregiver Burden Inventory),
and Caregiver Negative
Mood (subset of Profile of
Mood States).
Timeline: 6 and 12 months
Less negative mood in
CHESS+CR compared
with CHESS only; no
significant differences
on caregiver
preparedness or
physical burden
This study combined
two randomized trials
which had three
comparison groups but
did not use the control
comparison group which
did not use CHESS
medical conditions such as dementia or stroke, or sometimes to
the age of the patient such as for the pediatric population, many
of the studies targeted only the caregiver. However, some of the
studies were able to include the patient and caregiver in trying
to improve outcomes for both.15 17 19 20 27 30–33 In the eight
open-label studies 289 caregivers and patients were enrolled
and, in the 16 RCTs, 1882 caregivers were enrolled with 10
studies having fewer than 100 caregivers and six having more
than 100.
Interventions
The internet interventions included interactive modules with
study investigator assistance or community interactions. Five of
the RCTs compared an internet intervention with standard
care,23–25 28 33 six compared an internet intervention with
unguided computer use or internet resources,19 20 27 30 31 34
three compared an internet intervention with added features to
the same internet intervention,29 32 35 and two RCTs used a
three-group design comparing the internet intervention with a
control group and a third group of either higher or lower intensity than the intervention.36 37 About half of the RCTs had
durations of 3 months or less.23 27–30 33 35–37
Outcome measures
The included studies used formal rating scales to measure the
outcomes related to caregiver stress, mood, anxiety, well-being,
life satisfaction, or QOL. Secondary outcomes included internet
program usage and satisfaction. A few studies measured patient
healthcare utilization.25 34 36
Outcomes
Of the eight open-label studies, three reported positive benefit
in reducing caregiver stress as measured by their selected rating
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
scales,13 16 22 four reported mixed results,14 17 18 21 and one
reported a negative result.15
Of the 16 RCTs, six reported positive or mostly positive
results,19 23 27 31 34 36 five reported mixed results with some of
the outcome measures showing improvement28 32 35 37 or when
taking into account factors such as socioeconomic status,20 and
five reported negative results in the primary outcomes.24 25 29 30 33
These negative studies comprised most of the earlier studies
with publication years 2002, 2005, 2006, 2009, and 2013.
Risk of bias for RCTs
A summary of the risk of bias for RCTs is shown in table 7.
Keep in mind that the Cochrane Risk of Bias Tool is better
suited to assessing the fidelity of randomized double-blind trials
more along the lines of medication interventions. Also, these
internet intervention studies were likely not designed with the
Cochrane guidelines in mind (such as to describe the details of
randomization), so there are many resulting ‘unclear’ conclusions. However, we include this assessment as it is recommended when evaluating randomized trials.
Due to the nature of internet use, a careful control group and
rigorous blinding are usually not possible. Participants in several
studies in which the control group received usual care or no
internet support still had their own computer and/or access to
internet.30 33 For participants in the intervention groups there
could be a wide range of times that they spent on the intervention. Several studies did not record internet usage factors such
as time and frequency, making compliance difficult to assess,
also resulting in potential bias.25 31
Another risk of bias relates to incomplete data and drop-out
rates which might affect the true outcome of the study. Using
criteria from a different set of guidelines, acceptable drop-out
rates were based on the study duration: <20% for studies less
5
Review
Table 5 Summary of randomized controlled trials of internet-based interventions for caregivers of patients with mental illness (schizophrenia or
anorexia nervosa)
Year/study
Participants
Interventions
Outcome measures
Results
Comments
2005/Rotondi et al33
21 support persons and
their patients with
schizophrenia or
schizoaffective disorder:
11 in intervention group
and 10 in control.
Mean age 51.5; 66.7%
female
63 caregivers of patients
with anorexia nervosa:
33 in intervention group,
30 in control.
Mean age 48.2
Schizophrenia Guide
website providing
information and bulletin
board therapy groups.
Control: usual care.
Duration: 3 months
Perceived social support and
perceived stress.
Timeline: baseline and 3 months
No significant differences in
perceived social support or
stress from baseline to
3 month follow-up
The intervention’s
primary focus was to
improve patient support
and stress, but also
included support
person outcomes
Overcoming Anorexia
Online (OAO) website
delivering a cognitive
behavioral therapy (CBT)
intervention and
clinician guidance.
Control: standard
support resource with
telephone hotline, email
support, message board
and, where available,
support group.
Duration: 4 months
Overcoming Anorexia
Online (OAO) website +
clinician guidance.
Control group: OAO
alone.
Duration: 3 month
Hospital Anxiety and Depression
Scale (HADS; primary outcome).
Secondary outcomes consisted
of caregiver experience, impact
of illness, expressed emotion,
and accommodation/ enabling
scale.
Timeline: baseline, 4 months
(end of treatment) and 6 months
Intervention significantly
decreased anxiety and
depression (primary outcome
HADS, p=0.033) compared
with control group. No
significant improvements in
the secondary outcomes
The researcher
assessing outcomes
was adequately blinded
to the intervention vs
control group
Primary outcome: Caregiver
Level of Expressed Emotion
(LEE), rated by caregiver and
patient.
Secondary outcomes: General
Health Questionnaire-28,
Medical Outcomes Study Short
Form Scale, Depression Anxiety
Stress Scales-21, Eating Disorder
Symptom Impact Scale,
Experience of Care Giving
Inventory.
Timeline: baseline,
post-intervention, and 3-month
follow-up
Intervention group had a
larger significant decrease in
the intrusiveness subscale of
the LEE
2011/Grover et al34
2013/Hoyle et al35
37 caregivers of patients
with anorexia nervosa: 19
in intervention group, 18
in control group. Mean
age not reported. Gender:
83% female
than 3 months and <30% for studies more than 3 months.38
With these criteria, six of the short-term studies had acceptable
drop-out rates19 20 23 27 33 36 and four did not.28 30 35 37 All
five of the longer-term studies had drop-out rates
>30%,24 25 31 32 34 with one study reporting >50% loss to
follow-up.31 Most studies reported that the loss to follow-up
was similar between groups except one study which reported
more drop-outs in the control group24 and one study reporting
more drop-outs in the intervention group.37 One study included
intent-to-treat analysis27 and one study described the
intention-to-treat analysis but did not report the resulting
data.33
with providers or other caregivers.50 53–59 Some tested whether
an in-person educational workshop could be equally effective
when converted to an online format.47 60 Studies which were
not internet web-based, such as purely videoconferencing or
videophone-based, or those using older technology such as telephone dial-up modems, were also excluded.61–69 One study was
excluded because the target audience was professional caregivers
(ie, nursing home staff ) and the intervention was e-learning
modules only.70 Overall, these studies showed a wide range of
technologies and patient populations (dementia, cancer, brain
injury, frail elderly patients, developmentally disabled patients,
chronic illness, heart transplant, and schizophrenia).
Excluded studies
DISCUSSION
Thirty-two open-label studies were not included in the tables
because of our stringent inclusion criteria, but will be presented
here in the text because they still demonstrate useful applications of computer-based technology for assisting caregivers.
Several of these studies were proof-of-concept feasibility studies
which measured usability, usage, and/or user satisfaction.39–43
We also excluded studies which did not measure outcomes
related to reducing caregiver stress or improving caregiver QOL
but instead might have measured caregiver knowledge, for
example.39 44–52 Some of the interventions were only informational or educational without any interactive component such as
a discussion forum or a method for the caregiver to interact
In this systematic review of eight open-label trials and 16 RCTs
of internet interventions to improve caregiver stress, we identified moderate evidence of benefit: nine trials were positive
(three open-label studies and six RCTs), nine were partially positive (four open-label studies and five RCTs), and six were negative (one open-label study and five RCTs). Despite inherent
differences in assessing the risk of bias for internet behavioral
trials versus the traditional medication-based double-blind RCT,
the quality of the RCTs was acceptable given the nature of the
interventions.
The evidence of benefit increases if the ‘partially positive’ category was reassigned to the positive category. In that case, 18
6
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
Table 6
Summary of randomized controlled trials of internet-based interventions for caregivers of patients with medical illness (traumatic brain injury, sleep disturbance, fetal alcohol syndrome)
Year/study
Participants
Interventions
Outcome measures
Results
Comments
2006/Wade et al19
46 families of children with
moderate-to-severe traumatic brain injury:
26 in intervention group and 20 in control
group.Mean caregiver age not reported
Social Problem-Solving Index, Symptoms
Checklist-90-Revised (SCL-90-R), CES-D,
Anxiety Inventory.
Timeline: baseline and follow-up
Parents in the intervention group
reported significantly less depression,
anxiety, and general psychiatric
symptoms at follow-up. However,
problem-solving skills did not
significantly improve
Therapist assisted family in completing the
sessions with webcam videoconferencing if
family had not completed the content on
their own
2011/Mindell et al36
264 mothers and their children (ages 6–
36 months) with sleep problems:
96 in internet intervention group, 84 in
internet intervention plus bedtime routine
group, and 84 in control group. Mean
maternal age: 59% in the 30–39 year-old
age category
Brief Infant Sleep Questionnaire (BISQ),
Pittsburg Sleep Quality Index (PSQI)
regarding maternal sleep, Profile of Mood
States (POMS) regarding maternal mood
states.
Timeline: baseline, weeks 2 and 3
Both intervention groups showed
significant improvement of maternal
sleep and mood state compared with
control group
The intervention’s primary outcome was to
improve patient (child) symptoms (sleep)
instead of caregiver symptoms, however, the
study also measured caregiver (maternal)
response to the intervention
2012/Wade et al20
41 families of adolescents with
moderate-to-severe traumatic brain injury:
20 in intervention group and 21 in control
group.Mean age 41.58 in intervention
group and 40.81 in control
Social Problem-Solving Index, Symptoms
Checklist-90-Revised (SCL-90-R), CES-D,
moderated by socioeconomic status (SES).
Timeline: baseline and follow-up
Lower SES families using TOPS improved
on depression scale and two
problem-solving items compared with
lower SES in the control group
Therapist reviewed website content with
family via webcam videoconferencing in the
second part of each session
2012/Kable et al37
59 families of children with fetal alcohol
spectrum disorders (FASD): 18 in
intervention internet group, 23 in
workshop group, 18 in community
standard of care group
Online family problem-solving
therapy website including 14
sessions.
Control: internet resources
comparison group.
Duration: variable, depending on
session completion, overall
>3 months
Group 1 received the internet
Customized Sleep Profile (CSP)
algorithm-based advice on how
mothers can improve child’s
sleep.
Group 2 received CSP +
instructions on a nightly 3-step
bedtime routine for the child.
Group 3 (control) received no
intervention.
Duration: 3 weeks, of which first
week was baseline observation
and intervention was 2 weeks
Teen Online Problem Solving
(TOPS) website including 9–13
sessions.
Control: internet resources
comparison group with links to
TBI information.
Duration: 8 months
Community group received an
informational packet.
Workshop group had two
in-person workshops.
Internet group presented
web-based parent education
paralleling the workshops.
Duration: unspecified, probably
<3 months
Child Behavior Checklist, Caregiver
Advocacy Knowledge Questionnaire,
Behavioral Regulation Knowledge
Questionnaire.
Timeline: baseline and post-intervention
Internet group had no significant
improvement in child behavior while
community and workshop groups had
improvement. Internet group had
improvement in knowledge of FASD
Some baseline differences among group
characteristics
TBI, traumatic brain injury.
Review
7
8
Review
Table 7
Risk of bias and quality assessment for randomized controlled trials
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
Blinding?
Incomplete outcome
data addressed?
Free of selective
reporting?
Free of
other
bias?
?
H
H
L
H
?
?
H
L
L
L
Rotondi et al33
?
?
?
H
?
H
Marziali et al24
?
?
H
H
L
L
Wade et al19
L
?
L
L
L
H
Pierce et al25
L
?
H
L
L
H
Grover et al34
L
L
L
H
L
L
Mindell et al36
?
?
L
L
L
H
Namkoong et al31
L
?
?
H
L
L
Smith et al27
L
?
L
L
L
L
Wade et al20
L
H
H
H
L
L
Kable et al37
Chih et al32
?
?
?
?
?
?
H
?
L
H
L
H
Kajiyama et al28
?
?
?
H
L
L
Hoyle et al35
?
?
?
?
L
L
McLaughlin et al29
?
?
?
L
L
L
Reference
Adequate
sequence
generation?
Allocation
concealment?
Farnham et al30
?
Beauchamp et al23
?, unclear; H, high risk of bias; L, low risk of bias.
Comments
Did not describe dropout or sample size at the end of the intervention.
Participants in the control group could still access the internet
Low dropout rate. Reported that baseline measures and demographic characteristics of patients
who dropped out were not significantly different between the two groups
Unclear regarding dropout rate. Unclear regarding exact questions used to rate stress and social
support. A few participants in the control group had access to the internet
Research staff were not blinded to the groups. High and unequal dropout rate between
intervention and control groups, with 28/66 patients (42%) lost to follow-up
Participants and research staff were not blinded to group assignments, but ratings were made
by parents and thus not vulnerable to influence by research staff. Dropout rates were different
in intervention vs control, but not statistically significant. Families were allowed to keep
computer equipment at treatment completion as an incentive for participation
Dropout rates were high but equal between the intervention and control groups, and dropout
reasons were adequately explained. Participants were offered the computer equipment for free
at the end of the study, regardless of whether they were in the intervention or control group
Dropout data were not clearly explained. In the intervention group there were 24/33 (72.7%)
completers and in the control group there were 21/30 (70%) completers, approximately 30%
dropout rate
Caregivers (mothers) were not aware of the other groups. Significant sleep differences at
baseline. Study sponsored by a commercial entity. Participants were paid $90–$175 depending
on number of visits. Low dropout rate (3%) but unequal among the three groups
Secondary analysis. Use of the intervention system was not mandated. Laptop and internet
access were provided if needed. High dropout rate of 58%, 75 in intervention and 67 in control
The researcher assessing outcomes was blinded to the intervention vs control group. Dropout
information was adequately explained. Data analyzed with per-protocol and intent-to-treat
Participants and research staff aware of group assignments (no blinding). Ratings were made by
parents and thus not vulnerable to influence by research staff. Dropouts had higher depression
and distress than completers but was adequately explained
High dropout rate 20–40% similar across the three groups and adequately explained
Secondary analysis: the study combined two randomized trials and the original randomized
three-group design was reduced to two groups because of low recruitment. For data analysis
the relevant groups were selected. Participants were supplied with a laptop if needed and
allowed to keep it
High dropout rate of 31%, with 29 in the intervention and 18 in the control. Caregivers with
severe depression as measured by CES-D >30 were screened out
37 caregivers entered, 27 completed time 2 questionnaires but 30 (81%) completed the
intervention. Of the 27, 5 did not access the website. Of the 7 who withdrew from the study,
did not describe how many were from the intervention versus control
Incomplete assessments were low (6–14%) and not statistically different between the two
groups. Missing data were imputed
Review
trials (7 open-label studies and 11 RCTs) would be positive and
6 trials (1 open-label study and 5 RCTs) would be negative. The
‘partially positive’ results indicate that the study authors chose
several measures to analyze, and some of the measures showed
positive benefit while others did not. In newer study methodologies the authors frequently chose one primary outcome measure
and several secondary outcomes measures, and declare the
success of the study based on the primary outcome. Some of the
articles reviewed defined a primary outcome, but we did not categorize those as a negative outcome if the primary outcome was
negative but some of the secondary outcomes were positive.
While our rigorous inclusion criteria regarding the type of
trial (open-label studies and RCTs), the level of internet-based
technology with some component of interactivity, and the need
for formal outcome measures resulted in only 24 included trials,
we explained in the Results section why we excluded 32 openlabel studies. Most of these excluded studies reported favorable
outcomes in terms of feasibility, satisfaction, and benefit. Thus,
in looking beyond the strict level of evidence that we used, we
also found optimism that internet-based interventions can help
caregivers.
There were no clear factors such as duration or complexity to
suggest what intervention approach might be more effective.
The earlier studies tended to be negative, possibly related to
older internet technology (some of these studies used internet
TV) and less general comfort level with internet use. As technology improves, its access, ease of use, and acceptance increases. A
few of the studies incorporated videoconferencing, which was a
novel approach, especially in the earlier studies.19 20 24
Our findings are similar to those of other reviews of
technology-based interventions. In a meta-analysis of 28 studies
spanning 12 different illnesses, computer-mediated support
group interventions increased social support and QOL and
decreased depression.71 In a systematic review of patients with
dementia in 15 studies, networked information and communication technology interventions showed moderate effects on
improving caregiver stress and depression, although outcomes
were inconsistent.72 In a newer systematic review which
reported that internet-based interventions can improve aspects
of the well-being of dementia caregivers, it was also noted that
the overall level of evidence was low and lacked methodologic
quality and that more randomized controlled studies are
needed.73
one in cancer caregivers which identified needs as selfmanagement of distress and fostering of supportive family
relationships75—can help developers design the content of
internet-based interventions. Some of the elements can be used
for both patient and caregivers and across different health conditions. For example, one such module might allow for selfassessment of mood using interactive questionnaires and subsequent multimedia education and management of mood, distress,
and QOL.
Other considerations in designing caregiver interventions
would be whether the target audience should include patients.
In a study delivering an in-person multidisciplinary group intervention targeting QOL of cancer patients, caregivers were also
invited to some of the sessions.76 From this study, an analysis of
the QOL of patients and caregivers showed that, when patients
had better QOL, caregivers also had better QOL.77 It is intriguing to consider whether internet-based videoconferencing
delivery of such an intervention might similarly benefit patients
and caregivers. A recent review of consumer health information
technology to support caregivers of patients with chronic illnesses identified several considerations for future study.4 Online
modalities which promoted caregiver interactions, such as peer
support groups and chat rooms, were found to be highly used
and valued. These technologies can overcome barriers such as
distance, travel logistics and cost, and limited caregiver time
availability. There are still many gaps in our knowledge about
best evidence for future technology-based interventions to help
the caregiver. For example, exploration of age, gender, ethnic,
and socioeconomic differences in responding to such interventions; inclusion of patient and caregiver dyads versus caregivers
only; and use of technologies such as mobile devices, videoconferencing, or social media.
One of our findings from this review is the diversity of methodologies used and patient illnesses addressed. To help improve
comparability across studies, future trials can try to incorporate
more widely used caregiver rating scales and be clearer about
choosing a primary outcome measure and secondary measures.
Involving the appropriate psychology and QOL researchers can
help with measurement and methodology issues. Many of the
studies we reviewed were already of high quality. As this field
needs more exploration, open-label studies are beneficial but, in
the future, more RCTs would help to answer the research question of whether caregivers actually benefit from these internetbased interventions.
Future considerations
There is currently a wide variety of caregiver internet-based
interventions, as evidenced by our review findings and also the
studies we excluded. Our opinion is that these interventions
should take advantage of the interactivity possible through internet technologies, such as discussion forums and group videoconferencing, to connect caregivers with the medical team as
well as peer support. In designing internet interventions for
caregivers, the technology elements are similar to those for
patients. A systematic review of web-based interventions for
cancer patient empowerment identified commonly used elements such as education, self-monitoring, feedback/tailored
information, self-management training, personal exercise
program, and communication tools.74 In the caregiver interventions we reviewed, common elements also included education,
information, self-management, and communication. Of course
the target audience is different, so the content will be different,
such as information relevant to the patient (eg, regarding diagnosis and treatment) versus relevant to the caregiver (eg, how to
support the patient). Caregiver needs assessments—for example,
Hu C, et al. J Am Med Inform Assoc 2014;0:1–11. doi:10.1136/amiajnl-2014-002817
CONCLUSION
Internet-based interventions were mostly effective in reducing
aspects of caregiver stress and improving their well-being. This
systematic review of open-label studies and RCTs identified 24
such trials, with nine trials reporting positive benefits in the
outcome measures, nine reporting partially positive outcomes,
and six reporting no benefit of the internet-based intervention.
With continued population acceptance of internet use, there are
opportunities to use this platform to improve the lives of caregivers. Further studies are needed to assess outcomes for caregivers and their recipients’ health, different technology delivery
methods, and the cost of such interventions.
Contributors All authors meet the criteria for authorship and agree to be
accountable for all aspects of the work in ensuring that questions related to the
accuracy or integrity of any part of the work are appropriately investigated and
resolved. All authors were involved in the conception of the work, design of the
search strategy and methodology, review of articles, data collection, data analysis
and interpretation; initial manuscript draft and subsequent revisions; final approval
of version for submission and publication; manuscript revision and resubmission.
9
Review
Funding This work was supported by the Linse Bock Foundation.
Competing interests None.
29
Provenance and peer review Not commissioned; externally peer reviewed.
30
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