Inclusion of children with disabilities in qualitative health research: A scoping review.

<h4>Background</h4>Children with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adult report risks misrepresenting children with disabilities and their needs, and contributes to ex...

Full description

Saved in:
Bibliographic Details
Main Authors: Janet Njelesani, Vongai Mlambo, Tsedenia Denekew, Jean Hunleth
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2022-01-01
Series:PLoS ONE
Online Access:https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0273784&type=printable
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1832540049913151488
author Janet Njelesani
Vongai Mlambo
Vongai Mlambo
Tsedenia Denekew
Jean Hunleth
author_facet Janet Njelesani
Vongai Mlambo
Vongai Mlambo
Tsedenia Denekew
Jean Hunleth
author_sort Janet Njelesani
collection DOAJ
description <h4>Background</h4>Children with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adult report risks misrepresenting children with disabilities and their needs, and contributes to exclusion and a lack of diversity in the experiences being captured. Prioritizing the participation of children with disabilities enhances the relevance, meaningfulness, and impact of research.<h4>Methods</h4>A scoping review was conducted to critically examine the participation of children with disabilities in qualitative health research. The electronic databases PubMed, PsychInfo, Embase, and Google Scholar were searched. Inclusion criteria included qualitative health studies conducted with children with disabilities, published between 2007 and 2020, and written in English. Articles were screened by two reviewers and the synthesis of data was performed using numeric and content analysis.<h4>Results</h4>A total of 62 studies met inclusion criteria. Rationales for including children with disabilities included child-focused, medical model of disability, and disability rights rationales. Participation of children with disabilities in qualitative health research was limited, with the majority of studies conducting research on rather than in partnership with or by children. Findings emphasize that children with disabilities are not participating in the design and implementation of health research.<h4>Conclusion</h4>Further effort should be made by health researchers to incorporate children with a broad range of impairments drawing on theory and methodology from disability and childhood studies and collaborating with people who have expertise in these areas. Furthermore, an array of multi-method inclusive, accessible, adaptable, and non-ableist methods should be available to enable different ways of expression.
format Article
id doaj-art-6cd711a42fb54aebb66d3a821dd64e0b
institution Kabale University
issn 1932-6203
language English
publishDate 2022-01-01
publisher Public Library of Science (PLoS)
record_format Article
series PLoS ONE
spelling doaj-art-6cd711a42fb54aebb66d3a821dd64e0b2025-02-05T05:32:49ZengPublic Library of Science (PLoS)PLoS ONE1932-62032022-01-01179e027378410.1371/journal.pone.0273784Inclusion of children with disabilities in qualitative health research: A scoping review.Janet NjelesaniVongai MlamboVongai MlamboTsedenia DenekewJean Hunleth<h4>Background</h4>Children with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adult report risks misrepresenting children with disabilities and their needs, and contributes to exclusion and a lack of diversity in the experiences being captured. Prioritizing the participation of children with disabilities enhances the relevance, meaningfulness, and impact of research.<h4>Methods</h4>A scoping review was conducted to critically examine the participation of children with disabilities in qualitative health research. The electronic databases PubMed, PsychInfo, Embase, and Google Scholar were searched. Inclusion criteria included qualitative health studies conducted with children with disabilities, published between 2007 and 2020, and written in English. Articles were screened by two reviewers and the synthesis of data was performed using numeric and content analysis.<h4>Results</h4>A total of 62 studies met inclusion criteria. Rationales for including children with disabilities included child-focused, medical model of disability, and disability rights rationales. Participation of children with disabilities in qualitative health research was limited, with the majority of studies conducting research on rather than in partnership with or by children. Findings emphasize that children with disabilities are not participating in the design and implementation of health research.<h4>Conclusion</h4>Further effort should be made by health researchers to incorporate children with a broad range of impairments drawing on theory and methodology from disability and childhood studies and collaborating with people who have expertise in these areas. Furthermore, an array of multi-method inclusive, accessible, adaptable, and non-ableist methods should be available to enable different ways of expression.https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0273784&type=printable
spellingShingle Janet Njelesani
Vongai Mlambo
Vongai Mlambo
Tsedenia Denekew
Jean Hunleth
Inclusion of children with disabilities in qualitative health research: A scoping review.
PLoS ONE
title Inclusion of children with disabilities in qualitative health research: A scoping review.
title_full Inclusion of children with disabilities in qualitative health research: A scoping review.
title_fullStr Inclusion of children with disabilities in qualitative health research: A scoping review.
title_full_unstemmed Inclusion of children with disabilities in qualitative health research: A scoping review.
title_short Inclusion of children with disabilities in qualitative health research: A scoping review.
title_sort inclusion of children with disabilities in qualitative health research a scoping review
url https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0273784&type=printable
work_keys_str_mv AT janetnjelesani inclusionofchildrenwithdisabilitiesinqualitativehealthresearchascopingreview
AT vongaimlambo inclusionofchildrenwithdisabilitiesinqualitativehealthresearchascopingreview
AT vongaimlambo inclusionofchildrenwithdisabilitiesinqualitativehealthresearchascopingreview
AT tsedeniadenekew inclusionofchildrenwithdisabilitiesinqualitativehealthresearchascopingreview
AT jeanhunleth inclusionofchildrenwithdisabilitiesinqualitativehealthresearchascopingreview