Online Program

335095
Improving the Care Experience of Families with Children with Special Health Care Needs


Tuesday, November 3, 2015

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.

Learning Areas:

Administer health education strategies, interventions and programs
Advocacy for health and health education
Planning of health education strategies, interventions, and programs
Provision of health care to the public

Learning Objectives:
Identify at least four experiences parents describe as common in trying to obtain health care for their children with special health care needs Identify policy recommendations that parents of special health care needs describe as solutions to the challenges they confront

Keyword(s): Children With Special Needs, Health Care Delivery

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present on this topic because I have a background in preventive health for women and children, am a certified lactation consultant and work as a research analyst at UCSF on a broad range of topics including a role on the project I will be presenting on.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

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