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Multicenter Study
. 2015 Jul;52(1):13-21.
doi: 10.1002/mus.24503. Epub 2015 Apr 22.

Burden, professional support, and social network in families of children and young adults with muscular dystrophies

Lorenza Magliano  1 , Melania Patalano  1 , Alessandra Sagliocchi  1 , Marianna Scutifero  2 , Antonella Zaccaro  2 , Maria Grazia D'angelo  3 , Federica Civati  3 , Erika Brighina  3 , Giuseppe Vita  4 , Gian Luca Vita  4 , Sonia Messina  4 , Maria Sframeli  4 , Marika Pane  5 , Maria Elena Lombardo  5 , Roberta Scalise  5 , Adele D'amico  6 , Giulia Colia  6 , Michela Catteruccia  6 , Umberto Balottin  7 , Angela Berardinelli  8 , Maria Chiara Motta  8 , Corrado Angelini  9 , Alessandra Gaiani  10 , Claudio Semplicini  10 , Luca Bello  10 , Roberta Battini  11 , Guja Astrea  11 , Luisa Politano  2
Affiliations
Multicenter Study

Burden, professional support, and social network in families of children and young adults with muscular dystrophies

Lorenza Magliano et al. Muscle Nerve. 2015 Jul.

Abstract

Introduction: This study explores burden and social and professional support in families of young patients with muscular dystrophies (MDs) in Italy.

Methods: The study was carried out on 502 key relatives of 4- to 25-year-old patients suffering from Duchenne, Becker, or Limb-Girdle MD who were living with at least 1 adult relative.

Results: A total of 77.1% of relatives reported feelings of loss, 74.0% had feelings of sadness, and 59.1% had constraints in leisure activities. Burden was higher among relatives of patients with higher disability and who spent more daily hours in caregiving. Practical difficulties were higher among relatives who perceived lower help in patient emergencies and less practical support by their social network. Psychological burden was higher in those relatives who were unemployed, those with poorer support in emergencies, and those with lower social contacts.

Conclusions: Caring for patients with MDs may be demanding for relatives even in the early stages of these disorders, especially when social support is poor and the patient's disability increases.

Keywords: caregiving; family burden; muscular dystrophy; professional support; social network.

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