title: Burden, professional support, and social network in families of children and young adults with muscular dystrophies.
abstract: BACKGROUND
  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.
authors.affiliation: Department of Psychology, Second University of Naples, Viale Ellittico, 31, I-81100 Caserta, Italy.
authors.forename: Lorenza
authors.initials: L
authors.lastname: Magliano
authors.affiliation: Department of Psychology, Second University of Naples, Viale Ellittico, 31, I-81100 Caserta, Italy.
authors.forename: Melania
authors.initials: M
authors.lastname: Patalano
authors.affiliation: Department of Psychology, Second University of Naples, Viale Ellittico, 31, I-81100 Caserta, Italy.
authors.forename: Alessandra
authors.initials: A
authors.lastname: Sagliocchi
authors.affiliation: Cardiomyology and Medical Genetics, Department of Experimental Medicine, Second University of Naples (SUN), Italy.
authors.forename: Marianna
authors.initials: M
authors.lastname: Scutifero
authors.affiliation: Cardiomyology and Medical Genetics, Department of Experimental Medicine, Second University of Naples (SUN), Italy.
authors.forename: Antonella
authors.initials: A
authors.lastname: Zaccaro
authors.affiliation: NeuroMuscular Unit, Department of NeuroRehabilitation, IRCCS "E. Medea", Bosisio Parini (Lc), Italy.
authors.forename: Maria Grazia
authors.initials: MG
authors.lastname: D'angelo
authors.affiliation: NeuroMuscular Unit, Department of NeuroRehabilitation, IRCCS "E. Medea", Bosisio Parini (Lc), Italy.
authors.forename: Federica
authors.initials: F
authors.lastname: Civati
authors.affiliation: NeuroMuscular Unit, Department of NeuroRehabilitation, IRCCS "E. Medea", Bosisio Parini (Lc), Italy.
authors.forename: Erika
authors.initials: E
authors.lastname: Brighina
authors.affiliation: Department of Neurosciences, University of Messina, Rome, Italy.
authors.forename: Giuseppe
authors.initials: G
authors.lastname: Vita
authors.affiliation: Department of Neurosciences, University of Messina, Rome, Italy.
authors.forename: Gian Luca
authors.initials: GL
authors.lastname: Vita
authors.affiliation: Department of Neurosciences, University of Messina, Rome, Italy.
authors.forename: Sonia
authors.initials: S
authors.lastname: Messina
authors.affiliation: Department of Neurosciences, University of Messina, Rome, Italy.
authors.forename: Maria
authors.initials: M
authors.lastname: Sframeli
authors.affiliation: Department of Paediatric Neurology, Catholic University, Rome, Italy.
authors.forename: Marika
authors.initials: M
authors.lastname: Pane
authors.affiliation: Department of Paediatric Neurology, Catholic University, Rome, Italy.
authors.forename: Maria Elena
authors.initials: ME
authors.lastname: Lombardo
authors.affiliation: Department of Paediatric Neurology, Catholic University, Rome, Italy.
authors.forename: Roberta
authors.initials: R
authors.lastname: Scalise
authors.affiliation: Unit of Neuromuscular and Neurodegenerative Diseases, Bambin Gesù Children's Hospital, Rome, Italy.
authors.forename: Adele
authors.initials: A
authors.lastname: D'amico
authors.affiliation: Unit of Neuromuscular and Neurodegenerative Diseases, Bambin Gesù Children's Hospital, Rome, Italy.
authors.forename: Giulia
authors.initials: G
authors.lastname: Colia
authors.affiliation: Unit of Neuromuscular and Neurodegenerative Diseases, Bambin Gesù Children's Hospital, Rome, Italy.
authors.forename: Michela
authors.initials: M
authors.lastname: Catteruccia
authors.affiliation: Department of Brain and Behavioural Sciences - Child Neuropsychiatry Unit, University of Pavia, Italy.
authors.forename: Umberto
authors.initials: U
authors.lastname: Balottin
authors.affiliation: Child Neuropsychiatry, IRCCS "C. Mondino" Foundation, Pavia, Italy.
authors.forename: Angela
authors.initials: A
authors.lastname: Berardinelli
authors.affiliation: Child Neuropsychiatry, IRCCS "C. Mondino" Foundation, Pavia, Italy.
authors.forename: Maria
authors.initials: M
authors.lastname: Chiara Motta
authors.affiliation: IRCSS San Camillo, Lido, Venice, Italy.
authors.forename: Corrado
authors.initials: C
authors.lastname: Angelini
authors.affiliation: Department of Neurosciences, University of Padova, Italy.
authors.forename: Alessandra
authors.initials: A
authors.lastname: Gaiani
authors.affiliation: Department of Neurosciences, University of Padova, Italy.
authors.forename: Claudio
authors.initials: C
authors.lastname: Semplicini
authors.affiliation: Department of Neurosciences, University of Padova, Italy.
authors.forename: Luca
authors.initials: L
authors.lastname: Bello
authors.affiliation: Developmental Neuroscience, IRCCS Stella Maris, Pisa, Italy.
authors.forename: Roberta
authors.initials: R
authors.lastname: Battini
authors.affiliation: Developmental Neuroscience, IRCCS Stella Maris, Pisa, Italy.
authors.forename: Guja
authors.initials: G
authors.lastname: Astrea
authors.affiliation: Cardiomyology and Medical Genetics, Department of Experimental Medicine, Second University of Naples (SUN), Italy.
authors.forename: Luisa
authors.initials: L
authors.lastname: Politano
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D009136:Muscular Dystrophies / Q000191:economics* / Q000453:epidemiology* / Q000628:therapy; D011369:Professional-Patient Relations; D012044:Regression Analysis; D012944:Social Support; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: caregiving; family burden; muscular dystrophy; professional support; social network