"I got something positive out of this situation": psychological benefits in family members caring for young people with muscular dystrophy.
This article focuses on the psychological benefits (caregiving-family burden) in key relatives in the care of patients with muscular dystrophy (DM), a group of rare diseases characterized by progressive weakness and limitations in functional abilities. We described whether family burden perceived by relatives can be a positive experience and evaluated whether their perceptions vary in relation to: their opinion of the patient as a valued person, the level of involvement in care, and the level of support provided by the social and professional network. The sample includes 502 "key relatives" aged between 18 and 80 years, of patients aged between 4 and 18 years, suffering from Duchenne muscular dystrophy, Becker muscular dystrophy and cingulate muscular dystrophy, in charge for at least six months in one of the eight centers involved in the study. Of the key family members, 88% said they had achieved something positive about their situation, 96% considered their patients to be sensitive and 94% talented. The positive aspects of the family burden were more recognised by key family members who were more convinced that their sufferer was sensitive and who perceived that they received a higher level of professional support and psychological and social support. These findings indicate that the majority of key family members consider that their experience of caring has had a positive impact on their lives, despite practical difficulties in caring for patients with DM. Professionals should help relatives to identify the benefits of family burden without denying the difficulties. Practitioners themselves should develop a positive attitude towards family involvement in the care of patients with long-term illness.
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