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.

Magliano, L., Patalano, M., Sagliocchi, A., Scutifero, M., Zaccaro, M. A., D'Angelo Bozzi, 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., Berardinelli, A., Chiara Motta, M., Angelini, C., Gaiani, A., Semplicini, C., Bello, L., Battini, R., Astrea, G., Politano, L., Burden, professional support, and social network in families of children and young adults with muscular dystrophies, <<MUSCLE & NERVE>>, 2015; 52 (1): 13-21. [doi:10.1002/mus.24503] [https://hdl.handle.net/10807/260231]

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

Zaccaro, Maria Antonietta;D'Angelo Bozzi, Michele Giovanni;Pane, Marika;Battini, Roberta;
2015

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.
2015
Inglese
Magliano, L., Patalano, M., Sagliocchi, A., Scutifero, M., Zaccaro, M. A., D'Angelo Bozzi, 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., Berardinelli, A., Chiara Motta, M., Angelini, C., Gaiani, A., Semplicini, C., Bello, L., Battini, R., Astrea, G., Politano, L., Burden, professional support, and social network in families of children and young adults with muscular dystrophies, <<MUSCLE & NERVE>>, 2015; 52 (1): 13-21. [doi:10.1002/mus.24503] [https://hdl.handle.net/10807/260231]
File in questo prodotto:
Non ci sono file associati a questo prodotto.

I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.

Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/10807/260231
Citazioni
  • ???jsp.display-item.citation.pmc??? 18
  • Scopus 34
  • ???jsp.display-item.citation.isi??? 26
social impact