Transcript Slide 1

Director of Psychosocial
Services in Oncology
Associate Professor
Perelman School of Medicine of
the University of Pennsylvania
The National Children’s Cancer Society
Web Conference
April 17, 2012
at The Children’s Hospital of Philadelphia
Lamia P. Barakat, Ph.D.
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Help Your Child
Adapt and Grow
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Web
Conference
Outline
 Typical reactions to
cancer diagnosis and
treatment
 How distress changes
over time and for whom
 What is resilience and
what resilient families can
teach us?
 10 Tips for Promoting
Adaptation
 Additional adaptive coping
strategies
 Additional resources
 Questions
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 Risk and resilience or competence-based
approaches define our understanding of children and
families in health care systems.
 Psychopathology, or deficit approaches, do not
accurately reflect adaptation to childhood cancer.
 Most children with cancer and their families
(caregivers, siblings) adapt well over time.
 Families have resources for managing childhood
cancer and treatment but may also present with risks
for distress.
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Resilience Defines
our Understanding of Adaptation
Phase 3
Distress
Normative response:
Phase 2
Distress increases
then plateaus
Phase 1
Typical:
return
to
normal
function
over
time
Diagnosis
Time
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Distress
stable or
escalates
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Family Distress over Time
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Details on Adaptation
 Mildly elevated negative affect and posttraumatic stress
symptoms (PTSS) after diagnosis.
 Then steady improvements at 3 and 6-month follow-ups.
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Stress and distress decrease with time.
For majority of parents, feelings of uncertainty, anxiety, and
depression decrease over time.
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Mothers and fathers:
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Some studies suggest no differences between mothers
and fathers in distress.
Others find mothers have more depression, anxiety,
hopelessness, psychosomatic symptoms, and problems
with general well-being.
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 Parental distress is most acute at diagnosis
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Adaptation of Parents of Children with Cancer
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Lower self-esteem and self-concept
School functioning and academic achievement
Decreased social relationships
Setting goals and goal attainment
Employment difficulties
Posttraumatic stress symptoms (for survivors)
 Who is most at risk?
 Those with pre-existing child or family challenges
 Children with brain tumors or cancers that affect the
central nervous system
 Adolescents and young adults
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 Adaptation as measured by psychological functioning
is consistent with that of children without cancer.
 Effects may be more subtle and isolated:
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Adaptation of Children with Cancer
 Can vary in intensity
 May be disruptive to functioning
 Can be experienced by multiple systems simultaneously
 Symptoms
 Experience fear, horror, helplessness about diagnosis or some
aspect of illness or treatment
 Re-experiencing
 Avoidance/numbing
 Arousal
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Source: www.nctns.org
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 A set of psychological and physiological responses of
children and their families to pain, serious illness,
medical procedures, and invasive or frightening
treatment experiences.
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Pediatric Medical Traumatic Stress
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 Distress and arousal communicate to the
social environment – signal distress and
recruit support.
 Re-experiencing allows us to process and
resolve traumatic memories.
 Avoidance/distraction helps people tolerate
distress and get through hospitalizations
and procedures (i.e. the “bad times”).
 BUT … these reactions can create barriers
to accessing medical care (for survivors)
and maintaining quality of life.
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Adaptive Function of PMTS
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 What can we learn from
those who are resilient to
support those who struggle
over time
 How might you better
support yourself, your
partner, your child with
cancer, your other children?
 Risk-and-resistance model
provides guidance by
identifying modifiable risk
and resistance factors that
affect child and family
adaptation.
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FOR SUPPORTING YOUR CHILD,
YOUR FAMILY, AND YOURSELF
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10 Strategies
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 Keep in mind that members of the
same family can react in different ways.
 For children and teens, intense
feelings and behaviors (e.g. temper
tantrums, whining, talking back) are
common but often temporary reactions.
Most family members need time to
adjust to and cope with the changes.
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1. Be patient and give
everyone time to adjust
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 Diagnosis and treatment of a serious illness is
usually new, confusing, and scary for children and
siblings.
 Children have active imaginations; without accurate
and appropriate information, they can get the wrong
idea about what is happening.
 At the same time, parents often struggle with how to
explain the illness and its treatment. Ask questions
to figure out what your child knows and give
information in clear, age-appropriate ways.
 If you would like some help, the team can be a
resource for you.
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2. Help your child understand
what is happening
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 Remember that your relationship with the
medical team influences how safe your
child feels and how much your child trusts
them to help.
 Remind your child that the staff has a lot
of experience helping other children.
 Encourage your child to participate by
asking the team questions.
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3. Think of the medical team
as helpers
 In different ways (talking, drawing, story-telling,
hugging)
 At different times (dinnertime, bedtime)
 In different places (in the car, in the hospital)
 Sometimes, sharing your feelings can show
children that it is okay to do the same.
 When children or teens do talk, accept their
feelings and be a good listener, even if what
they say is hard to hear.
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 This can happen:
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4. Encourage your family
to share their feelings
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 Because illness and treatment can be
unpredictable, regular routines help children
and teens feel safer.
 Having everyday routines (e.g., meal and
bed times, household chores) and activities
give family members things to expect and
look forward to.
 Decorating the hospital room with things
that are familiar and comforting can create a
comfortable environment for your child and
family.
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5. Keep as many everyday
routines as possible
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 You may want to relax family rules in
order to help your child or teen feel
special or to make up for hard times
that your child is experiencing.
However, in the hospital and at
home, it is often better to keep most
of your family rules and expectations
the same.
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6. Set Limits as Usual
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 It is often tempting to do everything for a
child who is ill; however, doing things
independently, as much as the illness
allows, gives children a sense of
accomplishment and control.
 For example, give your child the chance
to do things like brushing teeth, dressing,
cleaning up toys, and preparing snacks
when possible.
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7. Encourage your child do
some things independently
 Talk ahead of time about how to explain
the illness and respond to questions.
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 After the diagnosis of a serious
illness, people can feel ‘different’ and
alone. You and your children may
wonder how others will react.
 Plan a few fun activities and
encourage visitors.
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8. Stay connected
with friends and family
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 You can care for your family better by
taking care of your own needs and dealing
with worries when they arise.
 Don’t forget to pay attention to health
habits that keep you strong and help you
cope, like eating, sleeping, getting fresh
air, and physical activity.
 Talk about your concerns with other
adults, such as friends, family members,
the psychosocial team, clergy, or medical
staff.
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9. Take Care of Yourself
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 Time away from your child allows you to
take care of yourself and other family
members.
 It also gives your child the chance to feel
safe without you and try more things
independently.
 When you leave your child with a family
member or familiar adult, be sure to let
them know when you are leaving, when
you will be back, and then follow through.
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10. Take Breaks
 Social Support
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 Appraisals /
Hopefulness
 Adaptive Coping
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Additional Strategies
Cancer Diagnosis
Cancer Treatment
Relapse
Late Effects
COPING
Active/Problem-focused
Emotion-focused
Social Support
APPRAISALS
Degree of Threat
Expected Outcome
Resources
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STRESSFUL EVENT
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Stress Processing Model (Lazarus & Folkman)
Appraisals
 Do we have the resources to deal with cancer and treatment?
 Are there aspects of my child’s cancer and treatment I can control?
 Do things generally work out the best for me and my family?
 Has my attitude about life, my family and friends, my future changed for the better
because of experiencing cancer and treatment of my child?
 13-year-old with cancer: “I had to express optimism about my disease.
The suffering, the side effects, all of them will pass away. I told myself I
was going to face cancer/chemotherapy that was considered a test, a
whole new life in my life . . . Thus, I changed my emotion, my feelings,
and my thoughts.” (Wu et al., 2009)
 Optimism is associated with:
 Improved life satisfaction
 More positive perceptions of one’s health
 Less anxiety
 Less depression
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 Is this event a threat to me or my family?
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 Appraisals
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Acceptance
Problem-focused coping (seek guidance, problem-solving)
Seeking social support
Approach coping (efforts to eliminate or reduce stressors)
 Emotion-focused coping
 Efforts to regulate emotions associated with the stressor)
 Distance coping or distraction--distancing from situation or
emotions, stepping back to reassess--adaptive in small doses
 Avoidance coping
 Escape
 Resignation
 Wishful thinking (the if-only fantasy)
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 Active (cognitive and behavioral efforts to define,
understand, and resolve stressor)
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Coping Strategies Used by
Children with Cancer and their Families
More Distress
)
Avoidant coping
(substance abuse)
 Isolation from others
 Negative self-blame
(emotional regulation
strategy)
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 Less Distress
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Problem appraisal
Active problem-solving
Social support-seeking
Perceived support
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How Coping Relates
to Parental Distress
and Adaptation
Mothers, compared to fathers, use more
coping strategies in general and rely on
information-seeking, social support, and
emotion-focused coping strategies.
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Mothers who use more problem-focused
coping (i.e. problem-solving ) and less
emotion-focused and avoidance coping (i.e.
getting out pent up feelings, denial)
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Have fewer symptoms of depression
and anxiety and less overall distress
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Fathers use more problem-focused
strategies (problem-solving)
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Fathers who use more emotion-focused
and avoidance coping
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Work more hours (work is a “refuge” to
avoid child’s illness)
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Fathers use more emotion-focused
coping the longer child is in treatment
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How Coping Relates to Parental
Distress and Adaptation
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 A strong belief that one has the resources to deal
with cancer and treatment and continued hope for
making the kind of future children and adolescents
want for themselves results in better psychosocial
functioning.
 Active coping is associated with better quality of life
and psychosocial functioning among children and
adolescents with cancer.
 Reduced social support puts children with cancer at
risk for poorer outcomes.
 Reliance on wishful thinking and denial, are
associated with more symptoms of anxiety and
depression and with more somatic complaints.
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How Coping Relates to Child Adaptation
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Case management
Illness-related education/information
Information about financial resources
Supportive counseling
Relationship counseling
Listening
Instrumental (rides, babysitting other children, meals)
Discharge planning assistance
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 Social support is what you get; perceived social
support is what you think you get/your satisfaction
with what you are getting.
 Different sources (family, friends, professionals,
internet) and types of social support:
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Social Support as a Coping Resource
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Facing the cancer with courage
Rekindle hope
Construct parental role ability
Assist the child to live with the illness
Improve family flexibility
 That said, we acknowledge that social supports
are sometimes perceived as unsupportive.
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 When parents perceive that they are wellsupport and when children and
adolescents remain connected with friends
and family, they are better able to:
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Social Support and
Adaptation
 “It’s a part of my personality change, I have had to be
very strong and just simply get people to, for want of a
better word, perhaps leave me to do my mothering and
lean very much on my GP and the Maternal Health and
Child Nurse”.
 A father reassessed his support:
 “You learn who your friends are. It’s interesting watching
people’s reactions. Some people stopped contacting us.
We’ve been lucky with the support we’ve been given.”
 A mother linked her child’s positive prognosis with
less need to talk with others:
 “We didn’t go to any of the other parent groups. We had
a good prognosis. We didn’t want to hear or tell. We
didn’t need that.”
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 For a mother, with no extended family support, the
role of formal support gained more significance:
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Parent Comments on Social Support
 optimize medical care
 prevent/reduce distress and traumatic stress
reactions
 promote positive adaptation and family functioning
throughout treatment and survivorship and across
multiple domains of functioning
 Team comprised of professionals from a
number of disciplines including social work,
child life, creative arts therapies, teachers,
and psychology.
 Also, conduct research in behavioral
oncology and provide staff support.
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 Goals are to:
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Psychosocial Services in Oncology at
the CHOP Cancer Center: A Model
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 “Universal” services for patients and families
bolster resources, address expected distress, and
promote resilience. Staff support provided.
Research conducted.
 “Targeted” programs are provided for patients and
their families who are at risk for or demonstrating
difficulties with adaptation.
 “Clinical” interventions, for patients and families
with severe distress, pain, and/or pre-existing
vulnerabilities, involve collaboration among all staff
providing psychosocial care. Psychological
intervention and psychiatry consultation initiated.
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Services Guided by PPPHM
http://www.chop.edu
/service/oncology
/home.html
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Resources for
Families at:
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Additional
Resources
 This includes framing cancer and treatment with positive
appraisals, using more active, problem-focused coping and
relying on social supports that provide instrumental help,
information, and emotional support.
 Self-care is essential.
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 Resilience of children and adolescents with cancer
and their families is not the exception; it is the norm.
 Goal is to identify and address risks while building on
your family’s resources to promote reduced distress
and adaptation over time.
 Building resources (key to adaptation) not only for
patients but for families as well.
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Conclusions
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QUESTIONS?