The experiences of family members who make decisions for their relatives with developmental disabilities when the individuals’ wishes are unknown

Date

2008-12-30T20:05:15Z

Authors

Gillespie, Deirdre

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Abstract

People with developmental disabilities are particularly susceptible to health challenges. If they are not capable of making treatment decisions, they rely on substitute decision makers to make decisions for them. In this research, I examined the experiences of families who have made decisions for their relatives with developmental disabilities when the individual’s wishes were unknown. Using a naturalistic, qualitative research design and an interpretive description approach, eleven family members, representing eight families who had made decisions for their relatives with developmental disabilities, were recruited in order to obtain data about their experiences. The data were analyzed in order to reconstruct current knowledge and interpret findings through a nursing theoretical lens. In my findings, I demonstrate that families of people with developmental disabilities are marginalized by the experience. They actively engage in lifelong processes and seek out community resources to support their relatives. The findings suggest that professionals should consider the processes, experiences and consequences of marginalization when supporting families of people with developmental disabilities.

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Keywords

Developmental Disabilities, Decision Making

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