Perspectives of children and adolescents with cerebral palsy about involvement as research partners: a qualitative study

Cavens, C; Imms, Christine; Drake, Gabrielle; Garrity, N; Wallen, Margaret

doi:10.1080/09638288.2021.1900927

Cited by 8 publications

(13 citation statements)

References 36 publications

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“…This study described the application of the Involvement Matrix in the context of our research project to involve youth with severe communication disabilities in South Africa in the roles of listener, advisor, decision‐maker and partner 40 . As limited guidelines exist for involving youth with severe communication disabilities in research, this study contributes valuable findings to the growing body of knowledge in this area 17,45 . In particular, this study expands the research on applying the Involvement Matrix in two significant ways.…”

Section: Discussionmentioning

confidence: 86%

“…40 As limited guidelines exist for involving youth with severe communication disabilities in research, this study contributes valuable findings to the growing body of knowledge in this area. 17,45 In particular, this study expands the research on applying the Involvement Matrix in two significant ways.…”

Section: Advisormentioning

confidence: 86%

“…However, the researchers of this project are cautious to suggest such involvement for all youth with severe communication disabilities, as some may not want to be involved in research or may not wish to be involved in all research phases 2 . Furthermore, some youth with severe disability may experience stress and undue pressure by being involved with researchers in health research 45 . It is important to ensure the voluntariness of such participation.…”

Section: Discussionmentioning

confidence: 99%

“… 2 Furthermore, some youth with severe disability may experience stress and undue pressure by being involved with researchers in health research. 45 It is important to ensure the voluntariness of such participation.…”

Section: Discussionmentioning

confidence: 99%

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The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

Dada

May

Bastable

et al. 2022

Health Expectations

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Introduction: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. Method: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities.Results: Six youth aged 19-34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum.

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Section: Discussionmentioning

confidence: 86%

Section: Advisormentioning

confidence: 86%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

Dada

May

Bastable

et al. 2022

Health Expectations

View full text Add to dashboard Cite

show abstract

“…This also means involving children with disabilities in research, yet few studies do 13–15. Nevertheless, children with disabilities can give insights to their unique life situations16 and listening to their experiences would benefit their access to human rights. The challenges to include individuals with communication difficulties in research13 can be overcome through use of graphic symbols, augmentative and alternative communication (AAC), and responsive interview guides adapted to the individual’s needs 14 17 18…”

Section: Introductionmentioning

confidence: 99%

Experiences of children with disabilities during the COVID-19 pandemic in Sweden: a qualitative interview study

Fäldt

Klint

Warner

et al. 2022

bmjpo

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BackgroundThe impact of the COVID-19 pandemic on people with disabilities has been described as a ‘triple jeopardy’. Not only have they experienced the negative social impacts of disease control measures, but access to required health services has been affected, and, not least, they are at increased risk of severe outcomes from COVID-19. This study aimed to determine how children with disabilities have experienced the pandemic in Sweden and its impact on their lives.MethodsSix children (5–13 years) were interviewed via video conferencing. An interview guide was adapted based on the children’s communicative abilities and included augmentative and alternative communication support. Reflective field notes were included in the analysis. The data were analysed using qualitative content analysis.ResultsTwo themes were identified: The child’s knowledge of Corona raises anxiety and fear; and Boring Corona makes the child even lonelier. The children had knowledge about and were worried about COVID-19, primarily about illness and death of their grandparents. The children longed for their grandparents and other social contacts at school, and life was described as boring and lonely. Many families lacked adequate tools to communicate with their children about the pandemic.ConclusionGiven adequate support, children with disabilities and communication difficulties can give insights to their unique life situations. The interviewed children reported significant impact on their life and school life. Children were worried about their grandparents based on their knowledge about the virus. The enthusiasm with which the children engaged in the interviews is testament to the need and right of all children, regardless of communicative competence, to voice their experiences

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Consumer involvement in research – parent perceptions of partnership in cerebral palsy research: a qualitative study

Headrick

Thornton²,

Hogan

et al. 2022

Disability and Rehabilitation

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Perspectives of children and adolescents with cerebral palsy about involvement as research partners: a qualitative study

Cited by 8 publications

References 36 publications

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

Experiences of children with disabilities during the COVID-19 pandemic in Sweden: a qualitative interview study

Consumer involvement in research – parent perceptions of partnership in cerebral palsy research: a qualitative study

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