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

Research output: Contribution to journalArticle

Abstract

Objectives:
This review synthesizes recent research on resilience in those who care for a family member with Duchenne Muscular Dystrophy (DMD), 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 DMD 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 DMD is conveyed. Social support appears to be a protective factor for DMD carers but further research is required on its relationship with resilience.
LanguageEnglish
Pages1-30
Number of pages30
JournalChronic Illness
Early online date26 Jul 2018
DOIs
Publication statusPublished - 26 Jul 2018

Fingerprint

Duchenne Muscular Dystrophy
Caregivers
Aptitude
Social Support
Research
Bibliographic Databases
Psychology
Health

Keywords

  • Duchenne Muscular Dystrophy, Resilience, Systematic Narrative Review, Social Support, Parents

Cite this

@article{4c23adb2d9d44cddb114e1fcf351be32,
title = "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 (DMD), 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 DMD 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 DMD is conveyed. Social support appears to be a protective factor for DMD carers but further research is required on its relationship with resilience.",
keywords = "Duchenne Muscular Dystrophy, Resilience, Systematic Narrative Review, Social Support, Parents",
author = "Suzanne Glover and Jill Hendron and Brian Taylor and Maggie Long",
note = "Merged duplicates due to email from Brian Taylor on 23 Sept 2019. Email uploaded to other files. REF non-compliant due to manuscript being uploaded to other files.",
year = "2018",
month = "7",
day = "26",
doi = "10.1177/1742395318789472",
language = "English",
pages = "1--30",
journal = "Chronic Illness",
issn = "1742-3953",

}

TY - JOUR

T1 - Understanding Carer Resilience in Duchenne Muscular Dystrophy: A Systematic Narrative Review

AU - Glover, Suzanne

AU - Hendron, Jill

AU - Taylor, Brian

AU - Long, Maggie

N1 - Merged duplicates due to email from Brian Taylor on 23 Sept 2019. Email uploaded to other files. REF non-compliant due to manuscript being uploaded to other files.

PY - 2018/7/26

Y1 - 2018/7/26

N2 - Objectives:This review synthesizes recent research on resilience in those who care for a family member with Duchenne Muscular Dystrophy (DMD), 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 DMD 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 DMD is conveyed. Social support appears to be a protective factor for DMD carers but further research is required on its relationship with resilience.

AB - Objectives:This review synthesizes recent research on resilience in those who care for a family member with Duchenne Muscular Dystrophy (DMD), 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 DMD 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 DMD is conveyed. Social support appears to be a protective factor for DMD carers but further research is required on its relationship with resilience.

KW - Duchenne Muscular Dystrophy, Resilience, Systematic Narrative Review, Social Support, Parents

U2 - 10.1177/1742395318789472

DO - 10.1177/1742395318789472

M3 - Article

SP - 1

EP - 30

JO - Chronic Illness

T2 - Chronic Illness

JF - Chronic Illness

SN - 1742-3953

ER -