The psychosocial impact of a progressive physical handicap and terminal illness (Duchenne muscular dystrophy) on adolescents and their families

Abstract

This paper reports in narrative style on a sample of 13-16-year-old Duchenne muscular dystrophy adolescents in a residential setting in the UK. The terminally ill dystrophic boys' physical handicaps were noticed at about five years of age. In-depth interviews were conducted with parents, while projective assessment and psychodrama were used with the boys. Findings for this paper draw heavily on family interviews. Not surprisingly, the Duchenne boys evinced significant isolation from the mainstream of normal culture. The parents of the terminal group showed marked preoccupation with their sons, great stress and diminished expression of enjoyment. The Duchenne adolescents raised the issue of handicap surprisingly often with their parents, suggesting their great need to acknowledge their disease with parents. Their parents, however, evinced marked difficulty in responding to death issues with the boys - a reaction which leaves the boys alone and the parents guilty. These observations on the family are discussed in the context of a family identification process.