Journeys along the Continuum of Choice: Conceptualizations of Access to Health Care Services among Families of Children with Special Health Care Needs

Background: Access to health care is considered to be a central contributing factor to health care disparities in the U.S. While the literature suggests multiple meanings and synonymous uses of the term "access," its definition remains unclear. Conversations with caregivers of children with special health care needs (CSHCN) who, by definition, are sicker and utilize more health services than most children, revealed a further nuanced understanding about what is meant by “access” to care.

Methods: From May-2009 to February-2010, 30 qualitative, open-ended interviews (60-90 minutes) were conducted in Illinois with caregivers of CSHCN. Respondents were recruited using purposive quota sampling techniques from a group of 102 respondents who had participated in a related telephone survey. With a grounded theory lens, data was analyzed by thematic and matrix coding using Nvivo.

Results: CSHCN caregivers conceptualized health care access along a continuum of choice. The sample was grouped into two ideal types.  “Limited-choice" (N=14) represented access to care that was available but with little or no choice.  “Open-choice" (N=16) represented access to the best and/or familiar care and included caregiver choice.  Seven caregivers initially had “limited-choice" and “muddled through” the health system until they ultimately found “open-choice" access.   

Conclusions: Qualitative interviews revealed a process-oriented nature of health care access bound by a continuum of choice. Caregiver perceptions and expectations of access were shaped by social determinants and conditioned by specific health care experiences.  This contextualization challenges health researchers and practitioners to think more about their understanding and operationalization of “access” for CSHCN.