The aim of this dissertation was to understand the lived experiences of fifteen African American parents of children ages five to eighteen with severe cerebral palsy. Although very few in number, current and historical research studies that have focused on racial differences in the prevalence of cerebral palsy have consistently shown that African Americans have a higher prevalence ratio and that the prevalence of severe cerebral palsy was 70% higher in Black children than white children. Unfortunately however, there remains a considerable gap in the literature relative to African American parents of children with severe cerebral palsy.
The main objectives of this exploratory study were to elicit the attitudes, opinions, and experiences of the participants through in-depth interviewing. Influenced by Rogers-Dulan and Blacher’s (1995) conceptual model, African American Families, Religion, and Disability, this dissertation explored adjustment and coping of these families, how they are impacted by caring for a child with severe cerebral palsy, and the support systems they utilize. The study was designed and conducted from a phenomenological perspective. A thematic coding method based on grounded theory was chosen to analyze the qualitative data. Questionnaires were used to compile demographic profiles of the parent participant and their child with severe cerebral palsy.
Significant themes that emerged from the data were self-reliance, caregiver tension, and mistrust. Results indicated that parents rarely sought support from others for assistance in caring for their child, despite feeling overwhelmed and limited. A second significant finding was that although the vast majority of the sample identified a religious affiliation, they received little to no support from their faith community and rarely attended worship services or participated in other church-related activities. Findings also indicated that racial discrimination and cultural incompetence and insensitivity contributed to mistrust of professional services and the underutilization of formal support services. Even though these parents encounter numerous challenges and complex life circumstances, they have developed positive adjustment and coping skills. Parents view their children as a “gift” and their role as their child’s primary caregiver as “rewarding”. Knowledge gained from these study participants about their lived experiences and reflections of their role as caregivers not only contributes to the literature, but has implications for social work practice and future research.