Being the Next of Kin of an Adult Person With Muscular Dystrophy

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Abstract

A chronic disorder affects all members of the family in various ways. The aim of this study is to elucidate the next of kin's (N = 36) experiences when an adult family member has muscular dystrophy. The relationships were partner (36%, n = 14), parent (18%, n = 7), child (21%, n = 8), sibling (15%, n = 6), and other relative (3%, n = 1). Latent content analysis is employed and involves an interpretation of the interview text. The results show the meaning of being close to a person with muscular dystrophy through the themes that emerged: exposure of the family; the span between obligation and love; being vigilant, protective, and supportive; and striving for an ordinary life. This study reveals a need for healthcare staff to understand the next of kin's narrated meaning of changes when a family member has a progressive disease.

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