Evaluation of the impacts of patient and public involvement on cancer nursing doctoral study exploring cancer survivors’ experiences of living with chronic post cancer treatment pain

Armoogum, Julie; Hepburn, Julie; Prior, Michael; McCabe, Candy; Harcourt, Diana; Llewellyn, Alison; Foster, Claire; Gibson, Andy

Abstract

Background. Patient and Public Involvement (PPI) can help shape research. It is important to capture the impacts that PPI have on cancer nursing doctoral research.
Methods: Two Public Contributors, who were cancer survivors living with chronic post cancer treatment pain, were recruited to work alongside the doctoral researcher throughout a PhD. To evaluate PPI impact, a Public Involvement Impact Log was maintained and Gibson and colleagues ‘CUBE’ framework was used. The ‘CUBE’ framework uses different forms of knowledge (public, professional) within a ‘knowledge space’ and incorporates four dimensions (voices, involvement, concerns, change). Two Public Contributors, four PhD supervisors and the doctoral researcher ranked PPI on a continuum for each dimension. This was then discussed in a workshop facilitated by a ‘CUBE’ expert external to the PhD team.
Results: PPI had many impacts on the research including inclusion of GP letters, interview scheduling, wording of patient facing documentation and settling researcher apprehensions regarding term ‘cancer survivor’. The ‘CUBE’ evaluation demonstrated consensus among team regarding PPI impact within the dimensions:
- ‘One way to be involved or many ways to be involved’: Median = 79 (range 71-100) towards many
- ‘Weak voice or strong voice’: Median = 89 (range 84-100) towards strong
- ‘Organisation’s concerns or public concern’: Median 50 (41-88) towards public concern
- ‘Organisation changes or organisation resists change’: Median 90 (range 80-100) towards willing to change
Prior to the workshop, the Public Contributors had not realised the degree of impact they had had on the research and the value attributed to their impact by the researcher.
Conclusion: Public Involvement Impact Logs and the ‘CUBE’ framework can be effective methods to evaluate PPI impact within cancer nursing doctoral studies. The workshops offered opportunity to articulate impact and appreciation of PPI. PPI should be included, encouraged and evaluated to capture the multiple perspectives of cancer care.

Citation

Armoogum, J., Hepburn, J., Prior, M., McCabe, C., Harcourt, D., Llewellyn, A., …Gibson, A. (2023, November). Evaluation of the impacts of patient and public involvement on cancer nursing doctoral study exploring cancer survivors’ experiences of living with chronic post cancer treatment pain. Poster presented at UKONS, Cardiff, Wales

• Presentation Conference Type: Poster
• Conference Name: UKONS
• Conference Location: Cardiff, Wales
• Start Date: Nov 17, 2023
• End Date: Nov 18, 2023
• Publication Date: Nov 19, 2023
• Deposit Date: Nov 13, 2023
• Publicly Available Date: Dec 20, 2023
• Public URL: https://uwe-repository.worktribe.com/output/11444746