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

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Title: Perspectives of children and adolescents with cerebral palsy about involvement as research partners: a qualitative study.
Authors: Cavens, C., Imms, C., Drake, G., Garrity, N., Wallen, M.
Source: Disability & Rehabilitation. Aug2022, Vol. 44 Issue 16, p4293-4302. 10p.
Subjects: Patient participation, Focus groups, Research methodology, Children with cerebral palsy, Interviewing, Patients' attitudes, Qualitative research, Interprofessional relations, Rehabilitation of children with disabilities, Research funding, Descriptive statistics, Cerebral palsy, Thematic analysis, Medical research, Medical needs assessment
Geographic Terms: Australia
Abstract: Children and adolescents with cerebral palsy have diverse needs and often engage with healthcare services, including paediatric rehabilitation. Partnering with these children and adolescents on research projects to inform practice has the potential to ensure services continue to remain relevant and appropriate. This study aimed to identify what children and adolescents with cerebral palsy suggest are effective ways for researchers to involve them as partners in research. This qualitative study was guided by interpretive description. Children and adolescents with cerebral palsy between 8 and 18 years participated in semi-structured, activity-based focus groups or interviews. Verbatim transcripts were coded and analysed using thematic analysis. One member of the research team was a young woman with cerebral palsy. Seventeen children and adolescents with cerebral palsy from NSW and Victoria (Australia) were involved. Participants were between 8 and 18 years (mean = 12 years), male (n = 11) and female (n = 6). Analysis identified four nested themes: "insider knowledge", "reasons for involvement", "roles in research" and "facilitating partnership". This study identified perspectives of children and adolescents on their involvement as research partners, and considerations for researchers to facilitate involvement of children and adolescents with cerebral palsy as partners in research. The commitment in healthcare to client-centred practice requires that consumers, including children and young people with cerebral palsy, have opportunities to influence the direction of research which impacts them. Children and young people with cerebral palsy are interested in research partnerships and motivated to be involved in various areas of research. Effective research partnerships with younger populations can be facilitated by researchers acknowledging a child or young person's expertise, and employing strategies relating to open communication, flexibility and support. [ABSTRACT FROM AUTHOR]
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Perspectives of children and adolescents with cerebral palsy about involvement as research partners: a qualitative study.
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  Data: <searchLink fieldCode="JN" term="%22Disability+%26+Rehabilitation%22">Disability & Rehabilitation</searchLink>. Aug2022, Vol. 44 Issue 16, p4293-4302. 10p.
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  Data: Children and adolescents with cerebral palsy have diverse needs and often engage with healthcare services, including paediatric rehabilitation. Partnering with these children and adolescents on research projects to inform practice has the potential to ensure services continue to remain relevant and appropriate. This study aimed to identify what children and adolescents with cerebral palsy suggest are effective ways for researchers to involve them as partners in research. This qualitative study was guided by interpretive description. Children and adolescents with cerebral palsy between 8 and 18 years participated in semi-structured, activity-based focus groups or interviews. Verbatim transcripts were coded and analysed using thematic analysis. One member of the research team was a young woman with cerebral palsy. Seventeen children and adolescents with cerebral palsy from NSW and Victoria (Australia) were involved. Participants were between 8 and 18 years (mean = 12 years), male (n = 11) and female (n = 6). Analysis identified four nested themes: "insider knowledge", "reasons for involvement", "roles in research" and "facilitating partnership". This study identified perspectives of children and adolescents on their involvement as research partners, and considerations for researchers to facilitate involvement of children and adolescents with cerebral palsy as partners in research. The commitment in healthcare to client-centred practice requires that consumers, including children and young people with cerebral palsy, have opportunities to influence the direction of research which impacts them. Children and young people with cerebral palsy are interested in research partnerships and motivated to be involved in various areas of research. Effective research partnerships with younger populations can be facilitated by researchers acknowledging a child or young person's expertise, and employing strategies relating to open communication, flexibility and support. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=158506318
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        Value: 10.1080/09638288.2021.1900927
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      – Code: eng
        Text: English
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        PageCount: 10
        StartPage: 4293
    Subjects:
      – SubjectFull: Patient participation
        Type: general
      – SubjectFull: Focus groups
        Type: general
      – SubjectFull: Research methodology
        Type: general
      – SubjectFull: Children with cerebral palsy
        Type: general
      – SubjectFull: Interviewing
        Type: general
      – SubjectFull: Patients' attitudes
        Type: general
      – SubjectFull: Qualitative research
        Type: general
      – SubjectFull: Interprofessional relations
        Type: general
      – SubjectFull: Rehabilitation of children with disabilities
        Type: general
      – SubjectFull: Research funding
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      – SubjectFull: Descriptive statistics
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      – SubjectFull: Cerebral palsy
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      – SubjectFull: Thematic analysis
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      – SubjectFull: Medical research
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      – SubjectFull: Medical needs assessment
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      – SubjectFull: Australia
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      – TitleFull: Perspectives of children and adolescents with cerebral palsy about involvement as research partners: a qualitative study.
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              M: 08
              Text: Aug2022
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              Y: 2022
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