Understanding Carer Resilience in Duchenne Muscular Dystrophy: A Systematic Narrative Review

Suzanne Glover, Jill Hendron, Brian Taylor, Maggie Long

Research output: Contribution to journalArticlepeer-review

12 Citations (Scopus)
384 Downloads (Pure)


Objectives: This review synthesizes recent research on resilience in those who care for a family member with Duchenne muscular dystrophy, identifying the challenges and potential factors moderating resilience. Methods: This systematic narrative review is informed by searches on six bibliographic databases between January and June 2016. Forty-one articles were identified to meet the inclusion criteria, and findings were synthesised around three key themes. Results: Those who care for someone with Duchenne muscular dystrophy have been described as resilient through building strength in facing the adversity of caring. The main predictors of carer resilience were the child’s level of disability, perception of the caring experience and family functioning. The outcomes of resilience were identified as better psychological and physical health as well as psychological adaption. Coping abilities and social support, influenced by individual and environmental factors contribute to resilience. Discussion: Research suggested that some carers have the ability to build resilience over time, although limited understanding of coping with the emotional experience of Duchenne muscular dystrophy is conveyed. Social support appears to be a protective factor for Duchenne muscular dystrophy carers but further research is required on its relationship with resilience.

Original languageEnglish
Pages (from-to)87-103
Number of pages17
JournalChronic Illness
Issue number2
Early online date26 Jul 2018
Publication statusPublished (in print/issue) - 1 Jun 2020

Bibliographical note

Funding Information:
Special thanks to Joanne Knox, Assistant Subject Librarian, Ulster University, for her technical assistance and support in developing the search strategy.

Publisher Copyright:
© The Author(s) 2018.

Copyright 2020 Elsevier B.V., All rights reserved.


  • Duchenne muscular dystrophy
  • parents
  • resilience
  • social support
  • systematic narrative review


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