ArticleEuropean journal of human genetics : EJHG2016
Mothers' psychological adaptation to Duchenne/Becker muscular dystrophy.
Article in European journal of human genetics : EJHG, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 2 of them syntheses that pooled it.
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Who cites it
22 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN.Health and quality of life outcomes · 2022Pooled it
- Resilience in Familial Caregivers of Children with Developmental Disabilities: A Meta-analysis.Journal of autism and developmental disorders · 2020Pooled it
- Psychosocial Burden of Duchenne Muscular Dystrophy on Caregivers in Australia: A Cross-Sectional Study.Healthcare (Basel, Switzerland) · 2026Article
- Indicators for Intellectual Disability Where No Formal Diagnosis Exists but Nursing Knowledge Demonstrates Grounds for a Formal Assessment: A Scoping Review.Healthcare (Basel, Switzerland) · 2025Review
- Caregivers' burden and its influencing factors among parents of children with asthma and comorbidities: a cross-sectional study.Frontiers in public health · 2025Article
- Quality of life and caregiving burden associated with parenting a person with Duchenne/Becker muscular dystrophy in Poland.Orphanet journal of rare diseases · 2024Article
- Trait resilience as a moderator between personality dysfunction and caregiving stress in caregivers of children and adults with developmental disabilities.International journal of developmental disabilities · 2024Article
- Perceived control is significantly associated with psychological adaptation in individuals with known or suspected inborn errors of immunity.Journal of community genetics · 2023Article
- The Role of Associations in Reducing the Emotional and Financial Impact on Parents Caring for Children with Duchenne Muscular Dystrophy: A Cross-Cultural Study.International journal of environmental research and public health · 2022Article
- An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne's Muscular Dystrophy.Children (Basel, Switzerland) · 2021Review
- The genome empowerment scale: An assessment of parental empowerment in families with undiagnosed disease.Clinical genetics · 2019Article
- Priorities when deciding on participation in early-phase gene therapy trials for Duchenne muscular dystrophy: a best-worst scaling experiment in caregivers and adult patients.Orphanet journal of rare diseases · 2019Article
- Cases from the Undiagnosed Diseases Network: The continued value of counseling skills in a new genomic era.Journal of genetic counseling · 2019Article
- Needs management in families affected by childhood-onset dystrophinopathies.SAGE open medicine · 2019Article
- Gene therapy as a potential therapeutic option for Duchenne muscular dystrophy: A qualitative preference study of patients and parents.PloS one · 2019Article
- A review of quality of life themes in Duchenne muscular dystrophy for patients and carers.Health and quality of life outcomes · 2018Review
- Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?Journal of genetic counseling · 2018Article
- Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy.Journal of genetic counseling · 2018Article
- Ethical issues in using the internet to engage participants in family and child research: A scoping review.PloS one · 2018Article
- Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition.Journal of genetic counseling · 2017Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Duchenne and Becker muscular dystrophy (DBMD) cause significant emotional and care-related burden on caregivers, but no studies have evaluated predictors of positive caregiver outcomes, including disorder-specific psychological adaptation. Using a community-engaged approach focused on supporting mothers in positive aspects of caregiving, this prospective study aims to assess (i) the association between child's baseline functional status and mothers' illness perceptions, resilience, and coping self-efficacy; and (ii) predictors of mothers' psychological adaptation to caring for a child with DBMD. Biological mothers with at least one living child with DBMD completed a baseline survey (n=205) with 1-year (n=147) and 2-year (n=144) follow-up surveys. Worse child's baseline function was associated not only with increased caregiver burden and reduced maternal resilience, but also with perception of positive disease impact on the family. At two follow-ups, increased psychological adaptation to DBMD was predicted by resilience (β=0.264, P=0.001) and perceived positive impact (β=0.310, P<0.001), controlling for mother's age (β=-0.305, P<0.001) and income (β=-0.088, P=0.245). Child's functional status and caregiver burden of DBMD did not predict DBMD-specific adaptation. Though clinicians caring for families with DBMD should anticipate increased caregiver burden as the disorder progresses, interventions focused on caregiver burden are not expected to influence mothers' psychosocial adaptation. Efforts to improve mothers' well-being should focus on fostering mothers' resilience and enhancing perceptions of positive disease impact (benefit finding). Results suggest that psychosocial interventions can highlight strengths and well-being rather than burden and deficit.
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