The aim of this dissertation is 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. This dissertation explores 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 main objectives of this exploratory study were to elicit the attitudes, opinions, and experiences of the participants through in-depth interviewing. Interview questions and demographic surveys were developed and explored three key domains - health, cultural and religious values, and support systems. 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. Two surveys were used to compile demographic profiles of the parent participants and their children with severe cerebral palsy. Significant themes that emerged from the data were self-reliance, caregiver strengths, caregiver burden, and mistrust. Results from the findings indicated that parents rarely sought support from others for assistance, despite feeling overwhelmed and limited. A second significant finding was that although the vast majority of the sample identified a religious affiliation, Christianity, they seldom attended their place of worship and received little to no support from their faith community. However, parents also reported the significance of their religious beliefs in coping with their child's severe disability and giving meaning and purpose to their lives. 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 child as a "gift" and their role as their child's primary caregiver as "rewarding". Knowledge gained from these fifteen 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, future research, and the religious community.
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