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Caring for a child with a progressive illness during the complex chronic phase: parents’ experience of facing adversity Fundy-Gravelle, Anna Marie

Abstract

Due to improving health care, increasing numbers of children who are affected with a progressive illness are surviving for longer periods with a complex chronic condition (Mullins et al., 1991; Tucker & Roberts, 1990). A complex chronic condition is characterized by progression of the child’s illness to a point such that they require specialized, time-consuming, and sometimes round-the-clock care. The terminal phase of illness, however, may be months or even years away. The recent trend towards home care (Seaton, 1991) means that parents must attempt to meet their child’s complex and multiple needs, as well as the many needs of the family as a whole. Continuous 24-hour care of these children is emotionally and physically exhausting for parents. The purpose of this study was to explore and describe the experience of parents caring for their child with a progressive life-threatening illness during the time the child was living with a complex chronic condition. The naturalistic research design of phenomenology was chosen for the study’s methodology. Five mothers and three couples (mothers and fathers) of children with progressive illnesses participated in a series of interviews. Parents’ perspectives on their experiences were elicited and transcribed. Their accounts became the data for analysis. Data collection and analysis were concurrent. Parents’ experiences of caring for their child were conceptualized as an ongoing process of “Facing Adversity”, characterized by defining and managing adversity. This thesis describes, from parents’ perspectives, how adversity was defined and managed. Concepts of normalization and chronic sorrow are considered in the conceptualization, as are the challenges of caregiving (particularly of mothers) who faced many hardships in their role, including the myriad of changes or transitions related to the increased burden of care. Parents’ experiences with the health care system are examined. While parents felt there were enough services to meet the needs of their family, and that respite care was an especially valuable service, they were overwhelmingly frustrated with the bureaucracy involved with health care delivery. Existing respite care services only partially met parents’ respite needs. Implications for nursing practice, education and research are identified.

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