Siblings of young people with Duchenne muscular dystrophy -- a qualitative study of impact and coping

BACKGROUND: Duchenne Muscular Dystrophy (DMD) is a progressively debilitating neuromuscular disorder markedly affecting family life. AIMS OF THE STUDY: To obtain descriptive accounts from siblings about impact and coping with DMD and consider implications for psychological function. METHODS: Semi-structured interviews with a purposive sample of healthy siblings of young people with DMD attending a regional centre. Main carers were interviewed for corroborative evidence. Interviews were recorded and transcribed verbatim prior to a thematic analysis. RESULTS: 35 siblings (18 girls, 17 boys from 29 families) and their parents were interviewed. Mean sibling age was 14.3 years (sd 2.4) (range 11-18). Young people with DMD were aged 5-22 years; most were wheelchair users and 3 required nocturnal ventilation. Six primary themes were identified. Knowledge about the nature of DMD had been acquired gradually and varied in breadth. Whilst siblings were involved and generally accepting of caring responsibilities, they were nevertheless able to pursue other activities and interests of their choice. Positive impacts included increased family cohesion, knowledge and maturity in siblings; negative impacts included inequality of parental attention/availability. Coping was aided by the normality of a situation gradually developing since early childhood, and by support from friends, relatives, teachers and mentors. Coping techniques included getting on with life one day at a time, proactively restraining negative emotions, humour, distractions, and physical relocation. CONCLUSIONS: DMD generates situations that have the potential to increase the risk of emotional problems in unaffected siblings, but its chronic course also provides opportunities for positive family psychological adjustment