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Pediatric Cancer: The Family
Journey
Dr. Aimee N. Thompson
Psychologist
Cincinnati Children’s Hospital
Cancer & Blood Diseases Institute
Overview
• Introduction
• Family Systems
– Theory
– Adaptation model
• Risk Factors
• Identified Strains
• Coping
• Tips/Tricks
Evolution of Childhood Cancers
• Progress in cancer
treatments
• Acute vs chronic
conditions
“The provision of appropriate and
timely supportive care for families
is essential to help them deal with
the shock of diagnosis and
treatment of cancer.”
Family Systems Perspective
Patients
• 6-17% develop depression
• 10-12% develop an anxiety disorder
• 40-50% of cancer patients desired psychosocial
support
• 33% have elevated distress scores
Mental symptoms and patient quality of
life linked stronger to psychosocial
factors than to the type/stage of cancer
or treatment options!
Parents/Caregivers
• Increased rumination
• Mothers
- More frequently use social support seeking,
religious coping
Siblings
• High risk for adjustment issues
• Common manifestations
• Perception of parental interactions with
sick child
Role of Family in Overall Coping
• Correlation between family’s ability to cope
and child’s quality of life
• Feelings of hopelessness in children
DEMANDS
Stressors
Strains
Daily
hassles
Family Adaptation
CAPABILITIES
Resources
Coping behaviors
Familial Risk Factors
• Perceived unsatisfactory financial status
• Trait anxiety
• Child behavior problems
• High levels of caregiving demands
• Past traumatic life events
• Less perceived social support
• Pre-existing psychological problems
Timeline
• Distress found to be highest during period
around diagnosis and one year following
– Anxiety
– Depressive symptoms
– PTSS
Strains: Cancer-Related
Overarching Theme: treatment effects
Sickness related
to chemotherapy,
radiation,
infections,
weakness, fatigue
Losing hair
Loss of limb or
functional ability
Recurrent
surgeries
Cognitive
problems
Strains: Child
• Fears about going
through more treatment
• Nightmares about past
treatment
• Fears of recurrence
• Peer perceptions
• Sadness because of
missing out on normal
activities
Strains: Family
• Strong emotional reaction
– Diagnosis and treatment
– Ongoing
• Balancing demands/needs
• Relationships
– Child
– Partner
• Pervasiveness of diagnosis
• Financial
Uncertainty
• Both acute and ongoing or pervasive fear
of possible disease consequences
• Highest: immediately after completion of
treatment
• Short term vs long term impact
Definitions of Supportive Care
Needs Supportive Care Needs Description
Informational Need for information to reduce confusion, anxiety, and
fear; To better inform the patient or family’s decision-
making; To assist in skill acquisition
Emotional Need for sense of comfort, belonging, reassurance in
times of stress and understanding
Psychosocial Needs related to one’s sense of self-worth, competence,
and being valued; Needs related to family relationships,
community acceptance
Practical Need for direct assistance to accomplish a task or
activity and thereby reduce demands on the person
Spiritual Needs related to the meaning that life holds a sense of
purpose; A relationship with a higher being
Physical Physical comfort; Freedom from pain; Optimum
nutrition; Ability to carry out activities of daily living
Coping is NOT
a static
process!!
Coping: Appraisal-focused
• Positivity
• Maintaining hope
• Spiritual
• Living in and focusing on present
Coping: Problem-focused
• Advocating for child
• Actively seeking information about cancer
• Organizing and planning ahead
Coping: Emotion-focused
• Humor and fun
• Celebrating small treatments
• Expressing negative emotion
• Seeking and giving support
Advocating for Ourselves and Our
Children
• Medical team
– Information delivery
• Hospital resources
Tips From Those Who Have
Been/Are There…and Continue on
Their Journey…
• Professional support for siblings
• Special days with other children
• Books
– Surviving Cancer after Surviving Cancer
– Daydreams and Butterflies
• Utilize hospital psychosocial support
• Support from someone on a similar path
• Focus on relationship
• Meal train/prep
• Identify spokesperson/communication plan
for family
• Become involved with local groups
And From the Psychologist…
• Establish routine
• Seek and accept help
• Take it one day at a time
• Monitor expectations
• Be kind with yourself
• Continually self-assess
A family’s journey with childhood
cancer is not a race, but a
marathon…so we must take the time
to care for ourselves throughout.
Final thoughts…
• You ARE enough
• Its ok to ask for help
• Its more exhausting to pretend everything
is “fine” than it is to ask for and receive
help
• This is family diagnosis and journey
• You WILL make mistakes
References
Friedrich, W.N., Jaworski, T.M., Copeland, D., & Pendergrass, T. (1994). Pediatric cancer: Predicting
sibling adjustment. Journal of Clinical Psychology, 50(3), 303-319.
Goldbeck, L. (2001). Parental coping with the diagnosis of childhood cancer: Gender effects,
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Kerr, L.M.J., Harrison, M.B., Medves, J., Tranmer, J.E., & Fitch, M.I. (2007). Understanding the
supportive care needs of parents of children with cancer: An approach to local needs
assessment. Journal of Pediatric Oncology Nursing, 24(5), 279-293.
Mackenzie, L.J., Carey, M., Sanson-Fisher, R., D’Este, C., & Yoong, S.L. (2015). A cross-sectional
study of radiation oncology outpatients’ concern about, preferences for, and perceived barriers to
discussing anxiety and depression. Psycho-oncology.
Pai, A.L.H., Greenley, R.N., Lewandowski, A., Drotar, D., Youngstrom, E., & Peterson, C.C. (2007). A
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