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

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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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 ?

10. 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

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

12. 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?

13. 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?

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

15. CF and Uncertainty:

16. Reference and Resources
Gledhill, Julia and Garralda, Elena (Aug, 2000). Surviving Chronic Illness: psychosocial outcome in adult life.
McLeod, S. A. (2013). Erik Erikson. Retrieved from
Erik-Erikson.html
McLeod, S. A. (2015). Jean Piaget. Retrieved from
McLeod, S. A. (2016). Maslow's Hierarchy of Needs. Retrieved from
Perrin EC, Gerrity PS. Pediatr Clin North Am Feb;31(1): Development of children with a chronic illness.

17. Thank You
Questions