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01-07-2020 | Intellectual Disability | Original Communication

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

Authors: Alessandra Tesei, Maria Nobile, Paola Colombo, Federica Civati, Sandra Gandossini, Elisa Mani, Massimo Molteni, Nereo Bresolin, Grazia D’Angelo

Published in: Journal of Neurology | Issue 7/2020

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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Title: Mental health and coping strategies in families of children and young adults with muscular dystrophies
Authors: Alessandra Tesei
Maria Nobile
Paola Colombo
Federica Civati
Sandra Gandossini
Elisa Mani
Massimo Molteni
Nereo Bresolin
Grazia D’Angelo
Publication date: 01-07-2020
Publisher: Springer Berlin Heidelberg
Keywords: Intellectual Disability
Intellectual Disability
Muscular Dystrophy
Muscular Dystrophy
Duchenne Muscular Dystrophy
Published in: Journal of Neurology / Issue 7/2020
Print ISSN: 0340-5354
Electronic ISSN: 1432-1459
DOI: https://doi.org/10.1007/s00415-020-09792-6

ACC 2024 Congress

Springer Medicine

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

Abstract

Background

Methods

Results

Conclusions

ACC 2024 Congress

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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