African-American Parents' Experiences Accessing Health Care for their Children with Special Health Care Needs – Special Families Project

Mendes, Michele A.

Saturday, 16 November 2013

Michele A. Mendes, PhD, RN, CPN
College of Nursing, East Carolina University, Greenville, NC

Learning Objective 1: Describe the factors that help African-American parents of children with special health care needs access the services that their children need.

Learning Objective 2: Describe the factors that make it difficult for African-American parents of children with special health care needs to access the services that their children need.

The National Survey of Children with Special Health Care Needs revealed that approximately 1.7 million CSHCN were identified as Black, non-Hispanic. This survey also identified many health disparities experienced by this group including unmet service and equipment needs, lack of effective care coordination and parents needing to decrease work hours or stop working to care for their child (Child and Adolescent Health Measurement Initiative, 2011). The purpose of the Special Families Project is to describe the social and environmental factors that contribute to the health disparities experienced by African-American CSHCN. The project, based on the principles of engaged scholarship (Sandmann, 2006), is a campus/community partnership aimed at promoting health equity.

The project employs a qualitative descriptive design to examine African-American parents’ of CSHCN perceptions of the factors that facilitate or hamper their ability to obtain the services that their children need. Preliminary data analysis revealed that parents described the support of friends and family, supportive health care professionals and environmental factors that help parents’ access care for their CSHCN. Institutional procedures, transportation difficulties and lack of assistance to navigate the system (eg. applications for Medicaid) were described as factors that hamper parents’ efforts to access care for their children.

To date five mothers and one grandmother of young school age children have participated. The project is ongoing with recruitment of participants from a broader age range (pre- and middle school). Project findings will be used to plan sustainable, community-based participatory programs to address health disparities in this group of children and their families.

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