The Lived Experience of Mothers Caring for an Adolescent or Young Adult with Severe Cerebral Palsy
Cerebral palsy is one of the most common causes of childhood disability, and a major cause of severe disability in children. Mothers of adolescents and young adults with severe CP often assume a role exceeding the usual normative activities of parenting in relation to the intensity, complexity, and temporal nature of the family caregiving experience. The aim of this phenomenologic inquiry was to explore the lived experience of maternal caregiving as experienced by mothers caring for adolescents and young adults with severe CP. Furthermore, the study sought to examine the essential aspects of this human experience using the phenomenological contextual processing and analysis method proposed by van Manen (1990). Eleven mothers were interviewed using a semi-structured interview format. One overarching theme, A Different Life, and four inter-related essential themes emerged from the narratives. The overarching theme, A Different Life, was revealed in the mothers' stories of their unexpected roles as the parent of a child with severe disabilities. The first essential theme, Managing an Unexpected Life, was uncovered in the experiential descriptions of a maternal caregiver role that included elements that differed from mothers of typically developing children. The second essential theme, Finding My Own Way, was associated with mothers seeking and finding their own approaches to balancing the demands of caregiving and family life. The third essential theme, Serving as My Child's Voice, was revealed in the advocacy activities on behalf of their child and other community members with disabilities; and the fourth essential theme, Facing an Uncertain Future, was uncovered in experiential data suggesting uncertainty associated with their child's age-triggered transitions in the health care and educational settings, and with the prospect of maternal caregiving in the future. Future research is needed to gain a better understanding of the support needs of mothers caring for adolescents and young adults with severe physical disabilities. This study suggests the need for improvements in the delivery of family-centered health care services for adolescents and young adults with severe CP and their families, and the development of interventions to support and sustain family caregivers over the prolonged course of maternal caregiving.
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