Impact of CF on Children who have a Parent with CF Gail Yashar, MS,MSW,LCSW Duke University Medical Center Durham NC

Presenter Disclosure Gail Yashar, MS,MSW,LCSW There are no relationships to disclose related to this presentation.

Impact of CF on Children who have a Parent with CF Objectives: Provide an overview of the Stages of Human Development Discuss CF and the Stages of Development Discuss the Impact of CF on Children who have a parent with CF Case study Parents and Children comments

Impact of CF on Children who have a Parent with CF Duke University Medical Center – Pediatric and Adult CF programs located in Durham, NC Serve patients in NC, SC, TN, and VA Pediatric program – 44 patients Adult program - 83 patients 13 patients have children = 16%. Children age range, 1< to 30

Erickson-Psychosocial (Virtues) Stages of Human Development Age Range Stages Relational Focus Piaget - Cognitive Erickson-Psychosocial (Virtues) Maslow Needs Birth- 2 Infancy Mother/ Caregivers Sensorimotor- Senses & Actions Trust vs Mistrust Attachment (HOPE) Survival Safety 2-7 Early Childhood 2-3Parents 4-6 Family Pre-operational Words & Images Magical Thinking Autonomy vs Self Doubt (WILL) InitiativevsGuilt(Purpose Love Affection 7-12 Childhood Neighbor-hood/School Concrete Operations Logical Thinking Industry (mastery) vs Inferiority (Competence Belonging Esteem 13-19 Adolescent Peer Group Formal Operations Abstract Thought Ego Identity vs role Confusion (Fidelity) Confidence, Belonging 19-35 Young Adulthood Friendships/ Partner and Moral Reasoning Intimacy vs Isolation (LOVE) Respect For and By Other 35-55 Adulthood Shared Household “ Generativity vs Self Absorption (CARE) Self Actualization (finding meaning) 55+ Maturity Humankind IntegrityvsDespair(Wisdom

Erickson-Psychosocial (Virtues) CF and Human Development Age Range Stages Relational Focus Piaget - Cognitive Erickson-Psychosocial (Virtues) Maslow Needs Birth- 2 Infancy Mother/ Caregivers Sensorimotor- Senses & Actions Trust vs Mistrust Attachment (HOPE) Survival Safety 2-7 Early Childhood 2-3Parents 4-6 Family Pre-operational Words & Images Magical Thinking Autonomy vs Self Doubt (WILL) InitiativevsGuilt(Purpose Love Affection 7-12 Childhood Neighbor-hood/School Concrete Operations Logical Thinking Industry (mastery) vs Inferiority (Competence Belonging Esteem 13-19 Adolescent Peer Group Formal Operations Abstract Thought Ego Identity vs role Confusion (Fidelity) Confidence, Belonging 19-35 Young Adulthood Friendships/ Partner and Moral Reasoning Intimacy vs Isolation (LOVE) Respect For and By Other 35-55 Adulthood Shared Household “ Generativity vs Self Absorption (CARE) Self Actualization (finding meaning) 55+ Maturity Humankind IntegrityvsDespair(Wisdom

Case Study- J and A J – 43, Dad, dx w/CF at 22 mo. Homozygeous ∆F508. Private Tutor 2015 underwent lung transplant assessment A - 40, Mom, CF carrier. RN 2 children, ages 12 and 7. Donor Conception Decision to have children and how? Given J-CF and A-CF carrier Implications? Am I the father? How and at what age to tell our children, how to minimize neg rxn. Parents noticing : ↑ worry and hypervigilance prior to hosp. admissions Interventions: family therapy, CF clinic appts

Impact of CF on Children who have a Parent with CF Burden: hesitant to share concerns with parents. Hypervigilance, Anxiety, Worry (sleep impacted) Fear of hospitals Confusion about pulmonary rehab – a sign of disease progression ?

Impact of CF on Children who have a Parent with CF Loss: of experiences with CF parent Are you my parent? Donor Conception, Adoption, Sperm Extraction Parent roles and sharing of tasks CF patient – balance own medical care needs with the child’s needs

Impact of CF on Children who have a Parent with CF Having the mindset of a future Seize the Moment

How do you think that CF has impacted your child/ children How do you think that CF has impacted your child/ children? Has it changes with age? If yes, please explain. When you get sick how do you notice your children responding and how do you address your child’s concerns?

3. How do you prepare your child/children when you are admitted to the hospital? What do you tell them? How do you ease their worry etc.? 4. What suggestions or advice do you have for a CF parent and their partner to help them address CF issues and concerns with their child/children?

5. What suggestions do you have for the CF team so that we can better support you and your child/children?

CF and Uncertainty: https://duke.mediasite.com/Mediasite/Play/b8e7c5d78c54434196b105c650e831241d  

Reference and Resources Gledhill, Julia and Garralda, Elena (Aug, 2000). Surviving Chronic Illness: psychosocial outcome in adult life. http://dx.doi.org/10.1136.adc.83.2.104 McLeod, S. A. (2013). Erik Erikson. Retrieved from www.simplypsychology.org/ Erik-Erikson.html McLeod, S. A. (2015). Jean Piaget. Retrieved from www.simplypsychology.org/piaget.html McLeod, S. A. (2016). Maslow's Hierarchy of Needs. Retrieved from www.simplypsychology.org/maslow.html Perrin EC, Gerrity PS. Pediatr Clin North Am. 1984 Feb;31(1):19-31. Development of children with a chronic illness. https://health.usnews.com/wellness/articles/2016-10-27/becoming-a-parent-with-cystic-fibrosis http://www.med.umish.edu/yourchild/topic/chronic.htm https://www.thespermbankofca.org/content/discussing-donor-conception-your-child-0

Thank You Questions