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The experience of caring for a child with a medically-fragile condiction at home: perceptions of parents

University of British Columbia

This study was designed to discover and describe the experiences of parents who care for their child with a medically-fragile condition at home. The qualitative method of phenomenology was employed to elicit an understanding of the parents' experiences. Data collection occurred through indepth interviews with six mothers and three fathers of six children who had a wide range of medically-fragile conditions and who were receiving in-home nursing respite support. Through a process of ongoing data collection and simultaneous data analysis, the experiences of the participants were described. Parents' experiences of caring for their child with a medically-fragile condition were conceptualized as evolving through three critical time periods: hospital-based care, transition from hospital to home-based care, and home-based care. In addition, the parents' descriptions of becoming their child's primary caregiver were conceptualized as progressing through four distinct stages across the time frame of these three critical periods. In particular, the characteristics of supportive and conflictual parent - health care provider relationships were highlighted as an important element of the participants' experiences. The description and analysis of these components of the parents' experience provided the foundation for the analysis of the dynamics of parental caregiving for a child with a medically-fragile condition at home. The dynamics of parental caregiving were conceptualized as a process of balancing the nature of caregiving demands with the nature of parental caregiving. The inherently fragile nature of the child's condition played a key role in the unique experiences of these families. Concepts central to understanding the participants' experience were discussed in relation to existing literature in this area. Implications for nursing practice, education and research were examined.

Thesis/Dissertation

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2009-01-15

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http://hdl.handle.net/2429/3695

Nursing

University of British Columbia

UBCV

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