Improving the Care Experience of Families with Children with Special Health Care Needs

Background: With the early implementation of the Affordable Care Act, which provides both opportunities and challenges for children with special health care needs, opportunities to develop and test new models have emerged.  As a means to inform these new efforts we sought the input of parents of children with special needs to learn about their experiences obtaining care and recommendations for improving the current system of care. 

Methods:  Ten focus groups were conducted of 52 parents reflecting diversity in language, race and ethnicity, children’s age and in children’s conditions. The groups were recorded according to protocols approved by the Institutional Review Board; transcripts of these recordings were analyzed utilizing a modified thematic network approach.  

Results: Families identified some differences based on linguistic and cultural variations as well as insurance coverage and children’s acuity.  However, four closely related core themes and their key subcomponents emerged.

1. All of the parents’ children require a wide range of medical and non-medical services to diagnose, treat and ideally, maintain their health and well-being, care that typically involves multiple providers and multiple systems.
2. The current system of medical care and ancillary services is not designed for children and families but for other “players.”
3. The burdens placed on the families are enormous: parents serve as advocates and case managers for their special needs child while supporting affected siblings and coping with their fear and grief. 
4. These issues are compounded by additional challenges for families of color, those who do not speak English, have limited education, or are low income.

Conclusions:  Most parents experience some dissatisfaction with the health and social service systems and many face barriers to needed care due to financial and non-financial barriers. Among families with children with special health care needs in this study, virtually all face challenges to gathering trusted information about their children’s health, obtaining access to their children’s needed services and obtaining support for themselves and their families.  To mitigate these emotional, financial and time burdens, parents recommended a series of specific policy and program reforms.