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

Abstract

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.

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Acknowledgements

The authors thank all patients and families for their collaboration and the medical, nursing and technical personnel of the IRCCS E Medea involved in the care and evaluation of the patients (E. Mornati, C. Gerosa, S. Molteni).

Funding

The work was supported by Grants of the Italian Ministry of Health Ricerca Corrente 2018 and 5 per mille funds for biomedical research (Grant no. 2013-2016).

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Correspondence to Maria Nobile.

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The study was approved by the Ethical Committee of the Scientific Institute IRCCS Eugenio Medea according to the Declaration of Helsinki.

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All patients provided written informed consent for participation in the study.

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Tesei, A., Nobile, M., Colombo, P. et al. Mental health and coping strategies in families of children and young adults with muscular dystrophies. J Neurol 267, 2054–2069 (2020). https://doi.org/10.1007/s00415-020-09792-6

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Keywords

  • Muscular dystrophy
  • Emotional problems
  • Behavioural problems
  • Psychopathology
  • Coping strategies
  • Mental health