[Racing with illness: the life experiences of mothers of children with duchenne muscular dystrophy].

BACKGROUND

Understanding the life experiences of mothers of children with Duchenne Muscular Dystrophy (DMD) is very important for nurses focused on providing family care. The present study provides valuable insight into this issue, as few studies on this important topic have been done previously.

PURPOSE

The objective of this study was to explore thoroughly the life experiences of mothers taking care of DMD children from their own perspectives.

METHODS

This study used a phenomenological approach. A purposive sample of 11 mothers of DMD children was recruited from the Taiwan Muscular Dystrophy Association (Southern Chapter). All agreed to join this study and were able to speak either Taiwanese or Mandarin fluently. Data collected through one-to-one, in-depth interviews were analyzed using the Colaizzi (1978) phenomenological methodology.

RESULTS

Results showed that the life experiences of mothers of DMD children were typified by the theme, "racing with illness". Four categories emerged from interview data, including: "loss of time and space", "physical and psychological pain", "damage to relationships", and "financial difficulties".

CONCLUSIONS

Study findings may help us better understand the life experiences of mothers of children with DMD and may serve as an important reference with regard to how best to coordinate government, medical, education and other support organizations to provide such mothers with greater support and assistance and DMD children with better care.