Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2021 Mar 11;8(3):212.
doi: 10.3390/children8030212.

An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne's Muscular Dystrophy

Debra Porteous  1 , Barbara Davies  1 , Christine English  1 , Joanne Atkinson  1
Affiliations
Review

An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne's Muscular Dystrophy

Debra Porteous et al. Children (Basel). .

Abstract

The purpose of this integrative review was to explore psycho-social impacts and therapeutic interventions for parent caregivers of young people living with Duchenne's Muscular Dystrophy (DMD). Electronic databases were searched for research publications between 2010 and 2020. This included Medline, CINAHL, PsycINFO, ERIC, ERC, and AMED. Four central themes emerged: Living with DMD; Knowing and telling; Transitioning; and Building resilience. The impact on parents caring for a child with DMD affected all aspects of their lives, changed over time, and had identifiable peak stress points. Unmet parental information and support needs left parents struggling in their role. Transition required changes to parenting behaviors and required adaptation and resilience. It is proposed that future investment should focus on anticipating family need, targeting intervention cognizant of predictable stress points and building resilience through social community. Parents may then be better positioned to support their child in looking forward.

Keywords: Duchenne’s muscular dystrophy; age 13–19; family burden/care burden; muscular dystrophy; parents caregivers; psycho-social needs.

PubMed Disclaimer

Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Search Strategy.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Waldrop A.N.J. Overview of gene therapy in spinal muscular atrophy and Duchenne Muscular Dystrophy. Pediatric Pulmonol. 2020 doi: 10.1002/ppul.25055. - DOI - PubMed
    1. Verma A. Recent advances in Antisense Oligonucleotide Therapy in Genetic Neuromuscular Diseases. Ann. Indian Acad. Neurol. 2018;21:3–8. doi: 10.4103/aian.AIAN_298_17. - DOI - PMC - PubMed
    1. Greener M. Making sense of antisense oligonucleotide therapy. Prescriber. 2020;31:15–18. doi: 10.1002/psb.1848. - DOI
    1. Whittemore R., Knafl K. The integrative review: Updated methodology. J. Adv. Nurs. 2005;52:546–553. doi: 10.1111/j.1365-2648.2005.03621.x. - DOI - PubMed
    1. Hopia H., Latvala E., Liimatainen L. Reviewing the methodology of an integrative review. Scand. J. Caring Sci. 2016;3:57–70. doi: 10.1111/scs.12327. - DOI - PubMed

LinkOut - more resources