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

Abstract

Purpose

Identify perceptions of parents and caregivers of children with cerebral palsy about being consumer research partners and identify strategies to inform involvement of parents in cerebral palsy research.

Materials and methods

Twenty-two parents in New South Wales and Victoria (Australia) participated in this qualitative study. Seven interviews and three focus groups were completed. Interpretive description guided data analysis. Methodological rigor was enhanced through involving two consumer investigators in the research team, member checking, and multiple researchers completing data analysis and theme generation.

Results

Participants identified a range of factors that may influence their involvement in research partner roles. Main topics emerging from the data included “Research Is Better with Parents” and “Parents Benefit from Being Research Partners.” A third, “Parents as Research Partners,” contained the themes “Flexible Involvement,” “Starting Partnerships,” and “Building and Sustaining Partnerships.”

Conclusion

This study has provided a rich insight into how parents perceive and describe engaging as research partners. Parent-identified guidance will inform future partnerships aiming to enhance the quality of cerebral palsy research and outcomes for people with cerebral palsy and their families. The involvement of consumer investigators in this study was considered valuable for enhancing the quality and applicability of the research.

IMPLICATIONS FOR REHABILITATION

• Parents believed that parent partnership in research has benefits for the research and for the consumers involved.

• Parents provided guidance about the importance of starting, building and sustaining relationships in involving parents as research partners.

• Understanding the parent context, investing in relationships and acknowledgement of, and recognition for, contributions were considered important for building and sustaining effective partnerships.

• Flexible approaches to supporting parents as research partners was considered necessary for effective partnership.

Keywords:

• Cerebral palsy
• consumer involvement
• patient and public involvement
• co-researcher
• research partner
• parents

Acknowledgements

We would like to sincerely thank Joan Gains for her substantial contributions to participant recruitment. We also thank CP Quest, the Centre of Research Excellence in Cerebral Palsy, the New South Wales/Australian Capital Territory Cerebral Palsy Register, and Cerebral Palsy Alliance for their support and assistance in recruitment for this project.

Disclosure statement

No potential competing interest was reported by the author(s)