The voice of caregivers of children and adolescents with spinal cord injuries: A scoping reviewShow others and affiliations
2023 (English)In: Journal of Spinal Cord Medicine (JSCM), ISSN 1079-0268, E-ISSN 2045-7723, Vol. 47, no 3, p. 315-326Article, review/survey (Refereed) Published
Abstract [en]
Context
Participation in SCI research with caregivers of children and adolescents with spinal cord injury (SCI) can occur in a range of different ways. This review explores the extent to which caregivers’ participation is connected to what might be called a voice.
Objectives
To explore the voice of caregivers by collating available research with the participation of caregivers of children and adolescents with SCI, and synthesizing how the research has been conducted.
Methods
The databases CINAHL, ERIC, MEDLINE, PsycInfo, and Scopus were searched for articles published between January 2008 and March 2022. Descriptive and narrative information was extracted and factors describing how caregivers participated were identified using an inductive approach.
Results
Twenty-nine articles were identified, of which 28 had affiliations connected to the USA, and 25 to Shriners Hospitals for Children. In most of the articles, the caregivers were invited to participate in the research to complete or develop measures. Information from the caregivers was often captured using close-structured questions and summarized quantitatively with little or no exploration of the perspectives of the caregivers.
Conclusion
The voice of caregivers of children and adolescents with SCI in research is limited by representativeness, the pre-determined emphasis, a lack of involvement in the process, and the reported narrative. By reflecting on voice, caregivers can have their experiences and perspectives acted upon to a greater extent to bring change, ultimately leading to improved care and health for children and adolescents with SCI.
Place, publisher, year, edition, pages
Taylor & Francis Group, 2023. Vol. 47, no 3, p. 315-326
Keywords [en]
Co-production, Integrated knowledge transfer, Parents, Pediatric, Patient and public involvement
National Category
Neurology Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:his:diva-24522DOI: 10.1080/10790268.2022.2164455ISI: 000924829900001PubMedID: 36745084Scopus ID: 2-s2.0-85147711327OAI: oai:DiVA.org:his-24522DiVA, id: diva2:1898068
Note
CC BY-NC-ND 4.0
Correspondence to: Elin Salmiranta, Jönköping Academy for Improvement of Health and Welfare, School of Health and Welfare, Jönköping University, Box 1026, Jönköping 551 11, Sweden. Email: elin.salmiranta@ju.se
The authors acknowledge the support and feedback from Elisabeth Nylander, Jönköping University Library. The first author dedicates this review to her beloved and deeply missed mother Pia Salmiranta (deceased Dec 2021) and acknowledges her for her never-ending support and for always being available for brainstorming and discussions.
Funding: None.
2024-09-162024-09-162025-09-29Bibliographically approved