Research in practice

Patient involvement in research: ensuring their true voice is heard

Involving children and young people in healthcare research holds challenges for nurses, and support for training and formal standards for benchmarking need to be in place
Picture shows a group of young people engaged in friendly conversation. Senior research nurse Heather Rostron examined the attitudes of investigators who recruit children and young people as advisers for research projects.

Involving children and young people in healthcare research holds challenges for nurses, and support for training and formal standards for benchmarking need to be in place

For her dissertation, senior research nurse Heather Rostron examined the attitudes of investigators who recruit children and young people as advisers for research projects. In this extended abstract she presents a summary of her findings.

Background

Patient and public involvement (PPI) with children and young people (CYP) is an increasingly recognised practice in healthcare research and is supported by the National Institute for Health Researchs (NIHR) advisory panel INVOLVE (INVOLVE 2017) . However, there is a lack of evidence of the attitudes towards PPI of investigators whose studies specifically recruit children and young people.

Aim

To determine the views and attitudes of investigators

...

Involving children and young people in healthcare research holds challenges for nurses, and support for training and formal standards for benchmarking need to be in place

For her dissertation, senior research nurse Heather Rostron examined the attitudes of investigators who recruit children and young people as advisers for research projects. In this extended abstract she presents a summary of her findings.

Picture shows a group of young people engaged in friendly conversation. Senior research nurse Heather Rostron examined the attitudes of investigators who recruit children and young people as advisers for research projects.
Picture: iStock

Background

Patient and public involvement (PPI) with children and young people (CYP) is an increasingly recognised practice in healthcare research and is supported by the National Institute for Health Research’s (NIHR) advisory panel INVOLVE (INVOLVE 2017). However, there is a lack of evidence of the attitudes towards PPI of investigators whose studies specifically recruit children and young people.

Aim

To determine the views and attitudes of investigators whose studies recruit CYP to the emerging practice of involving CYP as advisers in their studies.

Method

A scoping review (Arksey and O’Malley 2005) was undertaken in January 2018 using CINAHL, MEDLINE, EMBASE, PsychInfo and Google Scholar, along with handsearching. Papers were included when participants were lead investigators and their perceptions of PPI were evident in the findings. Studies before 2002, papers focusing on patients and the public acting as advisers for non-research purposes, and those focusing solely on patient and public engagement (INVOLVE’s definition) were excluded. Seven articles were included for review.

Findings

The search identified only two papers citing the attitudes of researchers towards PPI for research as the main aim. Most (n=5/7) of the papers were qualitative. Four themes were identified:

  • Relationships and power Majority findings identified the importance of non-dominant relationships (that is investigator-PPI, and clinical and non-clinical academic researchers, research managers and funders, versus members of the public) in determining the success and longevity of PPI groups.
  • PPI training Although investigators and PPI representatives generally support the use of informal, role-specific training, or provision of mentoring opportunities, concerns were expressed.
  • Motivation to undertake PPI All papers acknowledged tokenistic PPI gestures, when there should be an ethical imperative to undertake PPI.
  • Guidance requirement A requirement for further training provision and the need for robust standards were acknowledged.

None of the papers presented research that was undertaken in CYP settings.

Conclusion

The concept of PPI remains complex in healthcare research, although investigators generally acknowledge the benefits of PPI practice. However, the perceived shift in power between investigators and PPI representatives may constitute a new paradigm and present challenges for investigators. Training for PPI representatives, resulting in a perceived lack of objective measure of impact, is a concern for investigators. Investigator motivations for using PPI have also been brought into question.

Implications for practice

PPI activities need to be well-planned from the start of the research project and need to ensure that the true voices of PPI representatives are heard. Support for PPI practice in terms of training and formal standards for benchmarking need to be in place.


Heather Rostron is a senior research nurse with Leeds Children’s Hospital clinical research team, Leeds Teaching Hospitals NHS Trust. Dissertation supervisors were Veronica Swallow and Joanna Smith of the School of Healthcare, University of Leeds.

References

References for included studies

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