Online Program

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

Monday, November 2, 2015 : 2:30 p.m. - 2:50 p.m.

Rebecca Feinstein, Ph.D., L.C.S.W., Paul Baerwald School of Social Work and Social Welfare, The Hebrew University of Jerusalem, Jerusalem, Israel
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.

Learning Areas:

Assessment of individual and community needs for health education
Chronic disease management and prevention
Conduct evaluation related to programs, research, and other areas of practice
Planning of health education strategies, interventions, and programs
Public health or related laws, regulations, standards, or guidelines
Social and behavioral sciences

Learning Objectives:
Demonstrate the use of qualitative research as a way to gain new perceptions of health care access. Describe perceptions of health care access and choice of caregivers of children with special health care needs. Assess how new understandings of access influence health care service use. Define strategies to improve health care service delivery for CSHCN that consider access along a continuum of choice.

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

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a Lecturer at the Paul Baerwald School of Social Work and Social Welfare at Hebrew University of Jerusalem and chief researcher of this study from my doctoral dissertation at the University of Chicago.
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.