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

Abstract

Purpose

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.

Materials and methods

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.

Results

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”.

Conclusion

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.

IMPLICATIONS FOR REHABILITATION

• 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.

Keywords:

• Consumer involvement
• research partnership
• cerebral palsy
• children
• adolescents

Acknowledgements

The authors wish to sincerely thank the children and adolescents who participated in this study, the families and volunteer occupational therapy students from Australian Catholic University who supported them to participate, and the staff from the cerebral palsy organisations who assisted with recruitment particularly the NSW/ACT CP Register and the Victorian Cerebral Palsy Register.

Disclosure statement

The authors report no conflicts of interest.

Notes

1 National Disability Insurance Scheme. Australian national government scheme providing individualised packages of support to people with disability, their families and carers.

Additional information

Funding

This work was supported by an Occupational Therapy Australia Research Foundation Grant and the Australian Catholic University Faculty of Health Sciences Funding Support.