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

Lorenza Magliano, Melania Patalano, Alessandra Sagliocchi, Marianna Scutifero, Antonella Zaccaro, Maria Grazia D'angelo, Federica Civati, Erika Brighina, Giuseppe Vita, Gian Luca Vita, Sonia Messina, Maria Sframeli, Marika Pane, Maria Elena Lombardo, Roberta Scalise, Adele D'amico, Giulia Colia, Michela Catteruccia, Umberto Balottin, Angela BerardinelliMaria Chiara Motta, Corrado Angelini, Alessandra Gaiani, Claudio Semplicini, Luca Bello, Roberta Battini, Guja Astrea, L. Politano

Research output: Contribution to journalArticle

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.

Original languageEnglish
Pages (from-to)13-21
Number of pages9
JournalMuscle and Nerve
Volume52
Issue number1
DOIs
Publication statusPublished - Jul 1 2015

    Fingerprint

Keywords

  • Caregiving
  • Family burden
  • Muscular dystrophy
  • Professional support
  • Social network

ASJC Scopus subject areas

  • Clinical Neurology
  • Cellular and Molecular Neuroscience
  • Physiology (medical)
  • Physiology

Cite this

Magliano, L., Patalano, M., Sagliocchi, A., Scutifero, M., Zaccaro, A., D'angelo, M. G., Civati, F., Brighina, E., Vita, G., Vita, G. L., Messina, S., Sframeli, M., Pane, M., Lombardo, M. E., Scalise, R., D'amico, A., Colia, G., Catteruccia, M., Balottin, U., ... Politano, L. (2015). Burden, professional support, and social network in families of children and young adults with muscular dystrophies. Muscle and Nerve, 52(1), 13-21. https://doi.org/10.1002/mus.24503