TY - JOUR
T1 - Burden, professional support, and social network in families of children and young adults with muscular dystrophies
AU - Magliano, Lorenza
AU - Patalano, Melania
AU - Sagliocchi, Alessandra
AU - Scutifero, Marianna
AU - Zaccaro, Antonella
AU - D'angelo, Maria Grazia
AU - Civati, Federica
AU - Brighina, Erika
AU - Vita, Giuseppe
AU - Vita, Gian Luca
AU - Messina, Sonia
AU - Sframeli, Maria
AU - Pane, Marika
AU - Lombardo, Maria Elena
AU - Scalise, Roberta
AU - D'amico, Adele
AU - Colia, Giulia
AU - Catteruccia, Michela
AU - Balottin, Umberto
AU - Berardinelli, Angela
AU - Chiara Motta, Maria
AU - Angelini, Corrado
AU - Gaiani, Alessandra
AU - Semplicini, Claudio
AU - Bello, Luca
AU - Battini, Roberta
AU - Astrea, Guja
AU - Politano, L.
PY - 2015/7/1
Y1 - 2015/7/1
N2 - 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.
AB - 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.
KW - Caregiving
KW - Family burden
KW - Muscular dystrophy
KW - Professional support
KW - Social network
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U2 - 10.1002/mus.24503
DO - 10.1002/mus.24503
M3 - Article
AN - SCOPUS:84931562628
VL - 52
SP - 13
EP - 21
JO - Muscle and Nerve
JF - Muscle and Nerve
SN - 0148-639X
IS - 1
ER -