Mental health and coping strategies in families of children and young adults with muscular dystrophies: Journal of Neurology

A. Tesei, M. Nobile, P. Colombo, F. Civati, S. Gandossini, E. Mani, M. Molteni, N. Bresolin, G. D’Angelo

Research output: Contribution to journalArticlepeer-review


Background: Living with a progressive disease as muscular dystrophy (MD) can be challenging for the patient and the entire family from both emotional and practical point of view. We aimed to extend our previously published data about mental health in patients with MDs, also investigating coping profiles of both themselves and their parents. Furthermore, we wanted to verify whether psychological adaptation of patients can be predicted by coping strategies, taking also into account physical impairment, cognitive level and socioeconomic status. Methods: 112 patients with MDs, aged 2–32 were included. Their emotional and behavioural features were assessed through parent- and self-report Achenbach System for Empirically Based Assessment questionnaires and Strength and Difficulties Questionnaires. Development and Well-Being Assessment or Autism Diagnostic Observation Schedule were administered to confirm suspected diagnoses. Coping profile of both parents and patients was assessed through the self-administered New Italian Version of the Coping Orientation to the Problems Experienced questionnaire and its relationship with emotional/behavioural outcome was examined in linear regression analyses. Results: High prevalence of intellectual disability and autism spectrum disorders was confirmed in Duchenne MD. Despite the high rate of internalizing symptomatology, we did not report higher rate of psychopathological disorders compared to general population. Parents tend to rely more on positive reinterpretation and less on disengagement coping. Avoidance coping, whether used by parents or patients, and ID, predicted increased emotional/behavioural problems. Conclusions: Psychosocial interventions should address problems of anxiety and depression that people with MDs frequently experience, even through fostering parents’ and childrens’ engagement coping over disengagement coping. © 2020, Springer-Verlag GmbH Germany, part of Springer Nature.
Original languageEnglish
Pages (from-to)2054-2069
Number of pages16
JournalJ. Neurol.
Issue number7
Publication statusPublished - 2020


  • Behavioural problems
  • Coping strategies
  • Emotional problems
  • Mental health
  • Muscular dystrophy
  • Psychopathology
  • steroid
  • Achenbach System for Empirically Based Assessment
  • adolescent
  • adult
  • Adult Self Report
  • aggression
  • Article
  • attention deficit disorder
  • autism
  • Autism Diagnostic Observation Schedule
  • avoidance behavior
  • Becker muscular dystrophy
  • behavior disorder
  • cardiomyopathy
  • child
  • depression
  • Development And Well Being Assessment
  • Duchenne muscular dystrophy
  • family coping
  • female
  • human
  • intellectual impairment
  • intelligence quotient
  • limb girdle muscular dystrophy
  • limited mobility
  • major clinical study
  • male
  • mental health
  • parental attitude
  • priority journal
  • problem solving
  • questionnaire
  • self report
  • social problem
  • social status
  • social support
  • Strength and Difficulties Questionnaire


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