title: Being the next of kin of an adult person with muscular dystrophy.
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 interviewtext. The results showthe 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.
authors.affiliation: Swedish Institute for Disability Research, Orebro University, Center for Rehabilitation Research, Orebro County Council.
authors.forename: Katrin
authors.initials: K
authors.lastname: Boström
authors.forename: Gerd
authors.initials: G
authors.lastname: Ahlström
authors.forename: Helena
authors.initials: H
authors.lastname: Sunvisson
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000533:Altruism; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D018450:Disease Progression; D005190:Family / Q000523:psychology*; D005260:Female; D006040:Goals; D006801:Humans; D008019:Life Style; D008149:Love; D008297:Male; D008875:Middle Aged; D009136:Muscular Dystrophies / Q000451:nursing* / Q000523:psychology; D033262:Narration; D015404:Nursing Methodology Research; D036301:Qualitative Research; D012944:Social Support; D011795:Surveys and Questionnaires; D013548:Sweden