Understanding carer resilience in Duchenne muscular dystrophy: A systematic narrative review

Abstract

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.