Abstract
Original language | English |
---|---|
Pages (from-to) | 2054-2069 |
Number of pages | 16 |
Journal | J. Neurol. |
Volume | 267 |
Issue number | 7 |
DOIs | |
Publication status | Published - 2020 |
Keywords
- 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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Mental health and coping strategies in families of children and young adults with muscular dystrophies : Journal of Neurology. / Tesei, A.; Nobile, M.; Colombo, P.; Civati, F.; Gandossini, S.; Mani, E.; Molteni, M.; Bresolin, N.; D’Angelo, G.
In: J. Neurol., Vol. 267, No. 7, 2020, p. 2054-2069.Research output: Contribution to journal › Article › peer-review
}
TY - JOUR
T1 - Mental health and coping strategies in families of children and young adults with muscular dystrophies
T2 - Journal of Neurology
AU - Tesei, A.
AU - Nobile, M.
AU - Colombo, P.
AU - Civati, F.
AU - Gandossini, S.
AU - Mani, E.
AU - Molteni, M.
AU - Bresolin, N.
AU - D’Angelo, G.
N1 - Cited By :1 Export Date: 22 October 2020 CODEN: JNRYA Correspondence Address: Nobile, M.; Child Psychopathology Unit, Scientific Institute, IRCCS Eugenio Medea, Via Don Luigi Monza 20, Bosisio Parini, Italy; email: maria.nobile@lanostrafamiglia.it Funding details: 2013-2016 Funding text 1: 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). References: Carter, G.T., Rehabilitation management in neuromuscular disease (1997) J Neuro Rehabil, 11, pp. 69-80; Pieterse, A.J., Cup, E.H., Knuijt, S., Development of a tool to guide referral of patients with neuromuscular disorders to allied health services. Part two (2008) Disabil Rehabil, 30, pp. 863-870; Straub, V., Bertoli, M., Where do we stand in trial readiness for autosomal recessive limb girdle muscular dystrophies? 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PY - 2020
Y1 - 2020
N2 - 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.
AB - 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.
KW - Behavioural problems
KW - Coping strategies
KW - Emotional problems
KW - Mental health
KW - Muscular dystrophy
KW - Psychopathology
KW - steroid
KW - Achenbach System for Empirically Based Assessment
KW - adolescent
KW - adult
KW - Adult Self Report
KW - aggression
KW - Article
KW - attention deficit disorder
KW - autism
KW - Autism Diagnostic Observation Schedule
KW - avoidance behavior
KW - Becker muscular dystrophy
KW - behavior disorder
KW - cardiomyopathy
KW - child
KW - depression
KW - Development And Well Being Assessment
KW - Duchenne muscular dystrophy
KW - family coping
KW - female
KW - human
KW - intellectual impairment
KW - intelligence quotient
KW - limb girdle muscular dystrophy
KW - limited mobility
KW - major clinical study
KW - male
KW - mental health
KW - parental attitude
KW - priority journal
KW - problem solving
KW - questionnaire
KW - self report
KW - social problem
KW - social status
KW - social support
KW - Strength and Difficulties Questionnaire
U2 - 10.1007/s00415-020-09792-6
DO - 10.1007/s00415-020-09792-6
M3 - Article
VL - 267
SP - 2054
EP - 2069
JO - J. Neurol.
JF - J. Neurol.
SN - 0340-5354
IS - 7
ER -