Challenges for Caregivers of Children and Teens

Challenges for Caregivers of Children and
Teens Following Bone Marrow Transplantation
Ernest R. Katz, Ph.D.
Children’s Center for Cancer and Blood Diseases
Children’s Hospital Los Angeles;
Keck School of Medicine, University of Southern California
Overview of Presentation
• Bone Marrow Transplant as a Potentially Traumatic Life
Experience
• Understanding Individual Reponses of Patients and
Parents:
Taking Your “Stress Pulse”
• Enhancing Coping , Adjustment, and Quality of Life:
Finding “Benefits” in a Time of Challenge
• Discussion, Questions and Answers
We Don’t Want a Hollow “Victory”
Future Directions - APPS
4
Understanding The BMT Experience…
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Emotional impact on Patient,
Parents/Caregivers, and Family
– Life Pre-BMT
– During BMT
– Early Post-BMT
– Long Term
Survivorship
Risk and Resilience in
Facing BMT Challenges
• Child-Patient Issues
– Medical Experience: Past and Present
– Developmental Stage, Independence, and Challenges
• Ability to manage life demands independently
• School, peers, dating, job and workplace
• Ongoing medical surveillance, treatment, rehab
– Family and personal support
Risk and Resilience in
Facing BMT Challenges
• Parent / Caregiver Issues
– Trauma History
– Current Personal Challenges
• Finances, job
• Primary support: spouse, significant other,
family
• Emotional well-being
• Progress of child post-transplant
Cure is Not Enough!
• “The cancer experience …is a
process that extends throughout a
lifetime, a looking glass through
which all future health and illness
behaviors of the survivor must be
interpreted.”
-Oeffinger 2003
Normal and Chronic Stress
Alarm
Relaxation
Chronic Stress
Poulsen/ USC UCEDD
Definition:
Pediatric Medical Traumatic Stress
… is a set of psychological and physiological
responses of children and their families to pain,
injury, serious illness, medical procedures, and
invasive or frightening treatment experiences.
Responses to Pediatric Medical Trauma
• Response is determined by OUR Interpretation of the
Experience, and less by the medical event or its
objective severity
• May include symptoms of arousal, re-experiencing, and
avoidance or all together : PTSD (Post-traumatic stress
disorder)
• Reactions may vary in intensity and can be adaptive or
may become disruptive to functioning
The majority of pediatric patients and their families
are resilient and do well.
Family experience
of traumatic stress in cancer
In families facing childhood cancer, rates of PTSD are
often higher in parents than in the child with the cancer.
Moderate to severe PTSD symptoms:
•
•
•
•
Teen patientsSiblingsMothersFathers-
24%
29%
45%
35%
Kazak, Alderfer, Rourke, et al. (in press). Posttraumatic stress symptom and posttraumatic stress
disorder in families of adolescent cancer survivors. Journal of Pediatric Psychology.
BMT and
Traumatic Stress in Parents
• Providing care for a child undergoing BMT is extremely
stressful.
• 20% to 30% of mothers providing primary care to their
children during BMT experience moderate to severe
symptoms of depression or anxiety at the time of
transplant.
• Distress subsides for most mothers.
BMT and
Traumatic Stress in Parents
• 1 ½ years after BMT:
– 50% of All mothers reported clinically-significant
levels of intrusive thoughts and worries.
– 20% experience severe distress reactions defined as
an anxiety, depressive, or posttraumatic stress
disorder.
Thus, long-term traumatic stress responses are
relatively common in mothers.
Trajectory of Maternal Negative
Affectivity
Negative
Affectivity
Stress
InterventionAvoided Distress
Early
Intervention
3 Months
6 Months
What is Coping?
• Process of managing our emotions and behavior when
faced with a Challenge.
• Ongoing process of How We View the situation as
manageable or unmanageable/impossible/catastrophic.
• Either we change the situation OR change our Reaction!
Normalizing Traumatic Responses &
Making Meaning of the Event
• Accept the legitimacy and universality of your reactions
to your child’s experience and ongoing concerns.
• Identify Needs: Make sure your child and you have the
help you may need: medical, psychological, academic,
legal, community.
Normalizing Traumatic Responses &
Making Meaning of the Event
• Create a “frame of meaning” around the traumatic
experience.
• Make linkages between past positive experiences and
current thoughts, feelings, and behaviors: Trauma
Narrative.
• Highlight the difference between past and present
circumstances.
• Learn Coping Strategies to help with symptoms and
reminders
Stop-Relax-Think…
Learn to Recognize when your thoughts and feelings are
becoming overly negative.
• STOP Negative Thoughts:
– STOP Sign Technique
– Corrective Self-Talk / Self-Coaching
• Relax:
– Controlled Breathing
– Imagery
– Active Exercise / Alternative to Stress
• THINK:
– Alternatives?
– Problem Solving!!
Bright IDEAS Problem-Solving
Skills Therapy
Bright:
Start with a “Positive Outlook”
I: Identify a Specific Problem to Work on.
D: Define the Problem (who, what, when, where),
and Brainstorm all the Options to make it better.
E: Evaluate the Options and pick the best one to try.
A: ACT! Try out your Option to Resolve the Problem.
S: See What Happens. If outcome is not satisfactory, try
your Next Option until outcome is good.
Mindfulness
A psychological quality that involves bringing
one’s complete attention to the present
experience, on a moment-to-moment, nonjudgmental basis.
Co-Constucting
a Trauma Narrative
• Young children need adults to help them make sense of
events and to construct a narrative
• The parent is the child’s natural guide
• Child and parent have different experiences of the
trauma
– Their developmental perspectives are different
– Their emotional needs are different
– Their prior experiences and expectations are
different
HOPE Survivorship
Award Winners
Thank you!