1. Children’s Hospital Los Angeles

4. Objectives Descriptive Study Demographics Caregiver role Impact
Academic
Psychosocial
2. Intervention
Focus groups
Caregiver skills-building workshop

5. Survey Process 1) Screening survey
a) Medical Home (Federally Qualified Health Center)
b) Spina Bifida Clinic
c) Pulmonology Clinic
2) Telephone-based follow-up survey
a) Parent or guardian
b) Caregiving youth

7. Survey Process 1) Screening survey
a) Medical Home (Federally Qualified Health Center)
b) Spina Bifida Clinic
c) Pulmonology Clinic
2) Telephone-based follow-up survey
a) Parent or guardian
b) Caregiving youth

10. Depression Scale: Center for Epidemiologic Studies (CED-D)
Anxiety Scales: State Trait Anxiety Inventory (STAI)
Standard Operating Procedure: Referral to doctor or social worker

11. Intervention Coalition building Focus Groups Program Evaluation
Caregiving Workshop
Program Evaluation
Advocacy

12. American Academy of Pediatrics CATCH Grant funded
Caregiving Workshop
American Academy of Pediatrics CATCH Grant funded
Nursing
Home based-care strategies
Q&A, When to call for help
Child Life Specialists
Stress management
School-caregiving balance
Social Work
Home environment and family needs
Community resource referral

13. Dialogue Program Feedback Focus Groups Attitudes and experiences
Perceived impact
Benefit of caregiving
Self-efficacy
Access to medical care/home
Program Feedback
Evaluation of skills-building workshop
Caregiving knowledge and skills
School performance
Physical/mental health

14. Caregivers and the Medical Home
Care coordination
Family support
Referral to community resources
Child development

15. Challenges and Barriers
Logistic
Clinic time and space constraints
Survey distribution
Caregiver absence
Telephone follow up
Psychosocial
Stigma
Privacy
Fear of information sharing
Personal benefit

16. Selected References
Adelman RD, Tmanova LL, Delgado D, Dian S, Lachs MS. Caregiver Burden: A clinical review. JAMA ; 311:
Assaf R, auf der Springe J, Siskowski C, Ludwig D, Mathew MS, Belkowitz J. Participation rates and perceptions of caregiving youth providing home health care. J Commun Health ; 41(2): doi /s
Hunt, G., Levine, C. & Naiditch, L. (2005). Young caregivers in the US: Findings from a national survey. Retrieved from
Kavanaugh MS, Stamatopoulos V, Cohen D, Zhang L. Unacknowledged caregivers: A scoping review of research on caregiving in the United States.
National Alliance for Caregiving. Caregiving in the US Available at: Accessed November 7, 2016.
UK Department of Health. Framework for the Assessment of Children in Need and Their Families. UK Department of Health. Available at: Accessed June 30, 2013.

17. Dr. Rammy Assaf - rassaf@chla.usc.edu
Thank You!
Dr. Julia Belkowitz Dr. Connie Siskowski –
Dr. Rammy Assaf -
Website:
Phone number: