The family's experience of living with a child with Duchenne muscular dystrophy.

An ethnographic inquiry was conducted to better understand the experience of families living with a child with Duchenne muscular dystrophy. Participant-observation and in-depth interviews were used to collect data. Six themes emerged as primary descriptors of the experience: (a) Disillusionment: The Erosion of the Hope for Normalcy; (b) Society Confirms the Impossibility of Normalcy; (c) Dynamics of the Family: Who's Disabled Anyway?; (d) A Smaller World; (e) Letting Go or Hanging On; and (f) Things Must Change. Implications of these themes are discussed in terms of need for counseling and support services for families, in-service education for health professionals, and activities for children diagnosed with Duchenne muscular dystrophy.