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UBC Theses and Dissertations

Deciding what’s best for my child : factors that influence parents’ decisions about the care of technology-dependent children at home Bassingthwaighte, Carol Janet


Over the past decade there has been an increase in the population of children who are technology-dependent and living at home. This has created new roles for parents who learn all aspects of their child's care, including procedures that have traditionally been within the professional's domain. In the process of caring for their child, parents make many decisions related to that care. The factors that influence parental decisions are likely different from those that influence nurses' decisions. Differences between parents and nurses regarding what is the "best care" for a child can result in conflict between them. The purpose of this study was to explore and describe the factors that parents perceived as influencing their decisions regarding the care of their technology-dependent child at home. A secondary analysis was performed on data that had been collected for a phenomenological study which explored the role of the nurse in the home care of children with complex health care needs. Transcripts from interviews with ten parents were analyzed, using an interpretivist paradigm and a symbolic interactionism perspective. Findings revealed that parental readiness for decision-making varied. When parents were first at home they appreciated assistance from nurses to help set up care routines. However, over time, all parents wished to be the decision-maker regarding their child's care. If nurses did not consult parents regarding decisions about their child's care, it created stress for parents or conflict with the nurses. When making decisions parents considered factors related to their child's medical condition or care needs, as well as their child's developmental stage. Parents also considered factors related to themselves, such as their previous experience, their underlying values, other family responsibilities, or their level of fatigue or stress. Finally, parents considered factors related to the environment, such as the parent-nurse relationship, the availability and type of supports, and the physical aspects of the home. Seldom did they consider one factor in isolation from others. Rather, a complex web of factors underlay most decisions, and individual factors influenced the resulting decision in various directions. Three key ideas from the findings are discussed in relation to the existing theoretical and research literature. As well, implications for nursing practice, education, research and program planning are presented.

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