title: Psychological and practical difficulties among parents and healthy siblings of children with Duchenne vs. Becker muscular dystrophy: an Italian comparative study.
abstract: This study explored the burden in parents and healthy siblings of 4-17 year-old patients with Duchenne (DMD) and Becker (BMD) muscular dystrophies, and whether the burden varied according to clinical aspects and social resources. Data on socio-demographic characteristics, patient's clinical history, parent and healthy children burden, and on parent's social resources were collected using self-reported questionnaires administered to 336 parents of patients with DMD (246) and BMD (90). Parents of patients with DMD reported higher burden than those of patients with BMD, especially concerning feeling of loss (84.3% DMD vs. 57.4% BMD), stigma (44.2% DMD vs. 5.5% BMD) and neglect of hobbies (69.0% DMD vs. 32.5% BMD). Despite the burden, 66% DMD and 62.4% BMD parents stated the caregiving experience had a positive impact on their lives. A minority of parents believed MD has a negative influence on the psychological well-being (31.0% DMD vs. 12.8% BMD), and social life of unaffected children (25.7% vs. 18.4%). In the DMD group, burden correlated with duration of illness and parent age, and burden was higher among parents with lower social contacts and support in emergencies. In DMD, difficulties among healthy children were reported as higher by parents who were older, had higher burden and lower social contacts. In both groups, burden increased in relation to patient disability. These findings underline that the psychological support to be provided to parents of patients with MD, should take into account clinical features of the disease.
authors: Department of Psychology, Second University of Naples (SUN), Naples, Italy;
authors: Lorenza
authors: L
authors: Magliano
authors: NeuroMuscular Unit, Department of NeuroRehabilitation, IRCCS "E. Medea", Bosisio Parini (LC), Italy;
authors: Maria Grazia
authors: MG
authors: D'Angelo
authors: Department of Neurosciences, University of Messina, Messina, Italy;
authors: Giuseppe
authors: G
authors: Vita
authors: Department of Paediatric Neurology, Catholic University, Rome, Italy;
authors: Marika
authors: M
authors: Pane
authors: Unit of Neuromuscular and Neurodegenerative Diseases, Bambin Gesù Children's Hospital, Rome, Italy;
authors: Adele
authors: A
authors: D'Amico
authors: Child Neuropsychiatry Unit, Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy;
authors: Umberto
authors: U
authors: Balottin
authors: Department of Neurosciences, University of Padova, Padua, Italy and IRCSS San Camillo, Lido, Venice, Italy;
authors: Corrado
authors: C
authors: Angelini
authors: Developmental Neuroscience, IRCCS Stella Maris, University of Pisa, Pisa, Italy;
authors: Roberta
authors: R
authors: Battini
authors: Cardiomyology and Medical Genetics, Department of Experimental Medicine, Second University of Naples (SUN), Naples, Italy.
authors: Luisa
authors: L
authors: Politano
authors: Department of Psychology, Second University of Naples (SUN), Naples, Italy;
authors: Melania
authors: M
authors: Patalano
authors: Department of Psychology, Second University of Naples (SUN), Naples, Italy;
authors: Alessandra
authors: A
authors: Sagliocchi
authors: NeuroMuscular Unit, Department of NeuroRehabilitation, IRCCS "E. Medea", Bosisio Parini (LC), Italy;
authors: Federica
authors: F
authors: Civati
authors: NeuroMuscular Unit, Department of NeuroRehabilitation, IRCCS "E. Medea", Bosisio Parini (LC), Italy;
authors: Erika
authors: E
authors: Brighina
authors: Department of Neurosciences, University of Messina, Messina, Italy;
authors: Gian Luca
authors: GL
authors: Vita
authors: Department of Neurosciences, University of Messina, Messina, Italy;
authors: Sonia
authors: S
authors: Messina
authors: Department of Neurosciences, University of Messina, Messina, Italy;
authors: Maria
authors: M
authors: Sframeli
authors: Department of Paediatric Neurology, Catholic University, Rome, Italy;
authors: Maria Elena
authors: ME
authors: Lombardo
authors: Department of Paediatric Neurology, Catholic University, Rome, Italy;
authors: Roberta
authors: R
authors: Scalise
authors: Unit of Neuromuscular and Neurodegenerative Diseases, Bambin Gesù Children's Hospital, Rome, Italy;
authors: Giulia
authors: G
authors: Colia
authors: Unit of Neuromuscular and Neurodegenerative Diseases, Bambin Gesù Children's Hospital, Rome, Italy;
authors: Maria
authors: M
authors: Catteruccia
authors: Child Neuropsychiatry Unit, Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy;
authors: Angela
authors: A
authors: Berardinelli
authors: Child Neuropsychiatry Unit, Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy;
authors: Maria Chiara
authors: MC
authors: Motta
authors: Department of Neurosciences, University of Padova, Padua, Italy and IRCSS San Camillo, Lido, Venice, Italy;
authors: Alessandra
authors: A
authors: Gaiani
authors: Department of Neurosciences, University of Padova, Padua, Italy and IRCSS San Camillo, Lido, Venice, Italy;
authors: Claudio
authors: C
authors: Semplicini
authors: Department of Neurosciences, University of Padova, Padua, Italy and IRCSS San Camillo, Lido, Venice, Italy;
authors: Luca
authors: L
authors: Bello
authors: Developmental Neuroscience, IRCCS Stella Maris, University of Pisa, Pisa, Italy;
authors: Guja
authors: G
authors: Astrea
authors: Cardiomyology and Medical Genetics, Department of Experimental Medicine, Second University of Naples (SUN), Naples, Italy.
authors: Antonella
authors: A
authors: Zaccaro
authors: Cardiomyology and Medical Genetics, Department of Experimental Medicine, Second University of Naples (SUN), Naples, Italy.
authors: Marianna
authors: M
authors: Scutifero
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data; D002648:Child; D002675:Child, Preschool; D017281:Cost of Illness; D005190:Family; D005192:Family Health; D006801:Humans; D007558:Italy; D008875:Middle Aged; D020388:Muscular Dystrophy, Duchenne / Q000503:physiopathology / Q000523:psychology; D010290:Parents / Q000523:psychology*; D035781:Siblings / Q000523:psychology*; D012944:Social Support; D012959:Socioeconomic Factors
keywords: Becker muscular dystrophy; Duchenne muscular dystrophy; burden; parents, healthy siblings; social network