Tiers of Access: Conceptualizations of Access to Health Care Services Among Families of Children with Special Health Care Needs

Background and Purpose:  The navigation of our nation’s fragmented health-care system poses challenges for many families, but particularly for caregivers of children with special health-care needs (CSHCN), who represent a high-utilizing population that continuously struggles to gain access to appropriate, quality health-care services.  Access is typically defined as the actual utilization of health-care services and all that facilitates or hinders their use. This includes: the availability of adequate and affordable health insurance; the availability of primary-, specialty-, and tertiary-care services; and the socio-demographic characteristics of health-care consumers (Aday & Andersen, 1974). Via the examination of data from a qualitative study of how families of CSHCN employ social networks to navigate the health-care system, an alternative definition of access emerged, one that further reflects the social contexts of health and health care along with the roles of the social networks linking them (Pescosolido, 2006).

Methods: From May, 2009 to February, 2010, 30 in-depth qualitative interviews (60-90 minutes long) were conducted in Cook County, Illinois with English-speaking caregivers of CSHCN covered by public insurance (n=15), private insurance (n=6), or both (n=9). Purposive quota sampling techniques were used to recruit parents from a group of 102 respondents who had participated in a related telephone survey and had agreed to follow-up contact. Caregivers were asked to recount their child’s illness narrative. Characteristics of a family’s social network were collected by use of Antonucci’s (1986) Hierarchical Mapping Technique.  All audio transcriptions and field notes were entered into Nvivo software and analyzed by the author through a thematic coding scheme.     

Results: Respondents depicted a two-tiered definition of access to health-care services. 13 respondents described access for their child as obtaining a timely appointment with any available health-care provider (i.e. “just getting an appointment”).  The remaining 17 respondents equated access for their child as timely treatment by the optimal health provider available (i.e. “seeing the best person”).  Most striking among respondents seeking optimal treatment were the high levels of the caregivers’ education (n=16), persistence (n=17), and their larger, denser social networks (n=12).  Conversely, those seeking available treatment were more likely to be living at or below median income (n=12), minorities (n=8), and to have smaller, sparser social networks (n=9).

Conclusions and Implications: Qualitative interviews with families introduced an alternative and necessary two-tiered definition of access to health care. These differing perceptions of access to health care – available on the one hand, optimal on the other – suggest that families differ in terms of both their expectations of the health-care system and advocacy skills by education and income levels, minority status, and social-network characteristics. These findings warrant further examination of the concept of access in health-care research and practice, and of the influence of these perceptions on the type and quality of health-care received. This nuanced understanding of access is, of course, timely, and may prove useful in contextualizing policy recommendations for future health-care reform efforts, including the implementation of the Affordable Care Act and the reauthorization of the State Children’s Health Insurance Program.