Family context in muscular dystrophies: psychosocial aspects and social integration

Muscular dystrophies (MDs) are degenerative diseases which may led to marked functional impairment and reduced life expectancy. Being caregivers of a loved one with MD may be both a rewarding and a demanding experience that may have relevant impact on the quality of life of the whole family. In this short review we summarize the main findings of the first survey on family context in MD in Italy. The study was carried out on 502 key-relatives of patients suffering from Duchenne, Becker, or Limb-Girdle MD, aged between 4 and 25 years, and attending one of 8 participating Centers, all over 2012. The results revealed that practical difficulties were mainly related to relatives' involvement in helping the patient in moving and in relative's constraints of leisure activities. Furthermore, feelings of loss and perception of patient's condition as having negative effects on the family life were the psychological consequences more frequently complained. However, despite the difficulties, 88% of the key-relatives acknowledged the caregiving as a positive experience. In fact 94% of the respondents stated they could rely on friends in case of own physical illness, and 88% in case of psychological stress. Burden was found higher among relatives of patients with lower functional autonomy and longer duration of illness, and among relatives with lower professional and social support. Conversely, the positive aspects of the caregiving were more frequently acknowledged by those who received higher level of professional help and psychological social support. These results reveal that the caregiving experience has a positive impact on key-relatives quality of life despite the practical demands, and that the support of professionals is essential to help families in identifying the benefits of this experience without denying its difficulties.