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Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

Care guidelines for Duchenne/Becker muscular dystrophy (DBMD) include recommendations for assessment of caregivers of patients with DBMD followed by proactive psychosocial interventions. To inform clinical assessment, this study described appraisals of psychosocial needs and caregiving facilitators of mothers of individuals with DBMD. Two hundred and five mothers completed an online survey. More than 50% endorsed unmet needs for managing uncertainty about the future and managing DBMD fears. Higher levels of unmet need were associated with less disease progression/earlier stage of DBMD (rho = −0.166 p = 0.02). Twenty-one percent regularly used respite care and 57% worried about allowing others to care for their child. Highly-endorsed care facilitators included partner relationships (63%), child’s approach to life (59%), and family relationships (49%). Our findings highlight the importance of psychological and social support for caregivers. Starting when children are young, clinicians should assess caregivers’ unmet psychological needs, particularly uncertainty and fear. Exploring needs and facilitators may allow clinics to target and customize interventions that build upon existing strengths and supports. Our findings have implications for efforts to promote early diagnosis and newborn screening, in that increased needs in mothers of younger children should be anticipated and built into counseling. Further research can assess whether and how unmet needs change as new therapies become available.

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Acknowledgements

We are very grateful to the mothers who participated in this study. Holly Peay and Kathleen Kinnett are supported through an award from the Patient-Centered Outcomes Research Institute (PCORI) PCORnet Program (PPRN-1306-04640-Phase II). Bettina Meiser received a Career Development Award Level 2 from the NHMRC. Parent Project Muscular Dystrophy supported this research.

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Authors and Affiliations

  1. RTI International, 3040 E Cornwallis Rd, P.O. Box 12194, Research Triangle Park, NC, USA

    Holly L. Peay

  2. Parent Project Muscular Dystrophy, Hackensack, NJ, USA

    Holly L. Peay & Kathleen Kinnett

  3. Department of Clinical Genetics, Leiden University Medical Centre, Leiden, The Netherlands

    Holly L. Peay & Aad Tibben

  4. Prince of Wales Clinical School, University of New South Wales, Sydney, Australia

    Bettina Meiser

Authors
  1. Holly L. Peay
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  2. Bettina Meiser
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  3. Kathleen Kinnett
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  4. Aad Tibben
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Correspondence to Holly L. Peay.

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Conflict of Interest

Holly L Peay, Bettina Meiser, Kathleen Kinnett and Aad Tibben declare that they have no conflict of interest.

Human Studies and Informed Consent

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). This study was determined to be exempt by the Cincinnati Children’s Hospital Medical Center Institutional Review Board.

Animal Studies

No animal studies were carried out by the authors for this article.

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Peay, H.L., Meiser, B., Kinnett, K. et al. Psychosocial Needs and Facilitators of Mothers Caring for Children with Duchenne/Becker Muscular Dystrophy. J Genet Counsel 27, 197–203 (2018). https://doi.org/10.1007/s10897-017-0141-4

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  • DOI: https://doi.org/10.1007/s10897-017-0141-4

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