Problems Reported by Parents of Boys Suffering from Duchenne Muscular Dystrophy

Abstract

Sixty-nine parents of boys suffering from Duchenne muscular dystrophy were interviewed at home using a guided interview schedule. One of the areas investigated was problems faced by parents of sufferers. Sixty-two per cent of the reported problems were ‘practical problems’ such as lifting, eating and toileting problems; 23 per cent were ‘service problems’ such as not knowing who to turn to when a problem arises or difficulties in obtaining aids; and 15 per cent were ‘emotional problems’ such as depression and isolation. Forty-seven per cent of families interviewed had experienced problems with lifting their sons and over a quarter of the families mentioned problems regarding adaptations to housing. It is suggested that a wide range of practical and service problems put further pressure on parents who are already under considerable emotional pressure. Many of these problems could be avoided or reduced by better service provision including expert advice.