An integrative review exploring psycho-social impacts and therapeutic interventions for parent caregivers of young people living with Duchenne's Muscular Dystrophy

Porteous, Debbie, Davies, Barbara, English, Christine and Atkinson, Joanne (2021) An integrative review exploring psycho-social impacts and therapeutic interventions for parent caregivers of young people living with Duchenne's Muscular Dystrophy. Children, 8 (3). p. 212. ISSN 2227-9067

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Official URL: https://doi.org/10.3390/children8030212

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.

Item Type: Article
Uncontrolled Keywords: psycho-social needs; muscular dystrophy; Duchenne’s muscular dystrophy; parents caregivers; age 13–19; family burden/care burden
Subjects: B100 Anatomy, Physiology and Pathology
B700 Nursing
B900 Others in Subjects allied to Medicine
L400 Social Policy
L500 Social Work
Department: Faculties > Health and Life Sciences > Nursing, Midwifery and Health
Faculties > Health and Life Sciences > Social Work, Education and Community Wellbeing
Depositing User: Elena Carlaw
Date Deposited: 05 Mar 2021 15:24
Last Modified: 11 Mar 2021 09:45
URI: http://nrl.northumbria.ac.uk/id/eprint/45629

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