Powell, Rachael
Davies, Amy
Rowlinson-Groves, Kirsty
French, David P
Moore, John
Merchant, Zoe
Funding for this research was provided by:
Greater Manchester Cancer Alliance
NIHR Manchester Biomedical Research Centre (IS-BRC-1215-20007)
Article History
Received: 9 February 2023
Accepted: 20 May 2023
First Online: 11 August 2023
Declarations
:
: DF has no competing interests. AD and RP’s research time on the project was funded by a grant from Greater Manchester (GM) Cancer. JM, ZM and KRG have the following associations with GM Cancer and the GM Cancer Prehab4Cancer and Recovery Programme: JM: Clinical Director; ZM: Previously Programme Lead (2018 to 2021), now Allied Health Professional (AHP) Clinical Lead; KRG: GM Active Prehab4Cancer Programme Manager.
: The study was approved by the NHS Health Research Authority research ethics committee Wales REC 4 (reference 20/WA/0237). All research methods were performed in accordance with relevant guidelines and regulations.For patient participants, informed consent was audio-recorded immediately prior to conducting the interview, in a separate file to the interview audio-recording. Clinician participants gave informed consent by indicating agreement with a consent statement in the cover page of the online survey, before continuing to respond to survey questions.
: No details are included which could lead to identification of study participants. Participants consented to the use of anonymised quotes in study reports.
: <i>Roles and backgrounds of the research team; reflection on impact on analysis</i>The authorship team contained some individuals who had in-depth knowledge and a high level of involvement with the Greater Manchester (GM) Cancer Prehab4Cancer and Recovery (P4C) Programme, and research-focussed individuals who were independent of the programme. The research was funded by GM Cancer Alliance. Our research procedures were designed to be able to draw on the expertise of those involved with the programme, whilst ensuring that research and analysis processes were controlled by research-focussed team members to minimise any conflict of interest.JM is a consultant anaesthetist and clinical director of the P4C Programme. ZM is an occupational therapist by background. She was the Programme Lead of the P4C Programme during the running of the study and is now the AHP Clinical Lead for the programme. KRG was the P4C Programme Manager at GM Active and her roles included organisation and delivery of P4C assessment and exercises, and training of P4C staff. It could be expected that JM, ZM and KRG might have vested interest in receiving positive findings related to the P4C programme. However, the study was initiated by JM and ZM wishing to learn about any barriers to engagement that individuals might experience, and to understand peoples’ experiences of the programme such that directions for improvement could be identified. The experience of JM, ZM and KRG was valuable in ensuring that the study was designed to be as feasible as possible to run, particularly given the challenging circumstances of the COVID-19 pandemic, and to provide the research members of the team with a strong understanding of the programme, answering questions as they arose. They also provided valuable insights during analysis, in providing context where the research team was uncertain about participants’ meanings, and in discussing and giving additional perspectives on the findings.Whilst JM, ZM and KRG were keen to receive constructive feedback for the P4C programme, it was felt that it was important to ensure that the individuals leading, and in control of, the research and data analysis were independent of the P4C programme to ensure transparency and minimise potential conflict of interest. We also had to consider who might have access to the data sets. Both patient and ‘clinician’ participants were drawn from a relatively small and highly specialised group of people, and even after removing identifying details, it was considered possible that JM, ZM and KRG could potentially identify participants from datasets due to the nature of discussions, roles, and valuable contextual information which participants could provide. Therefore, a further step was taken to protect participant identification and to enable them to speak and write freely about their experiences, without concern that members of their care team/P4C programme, or clinical colleagues, might be able to identify them: in our data management plan, approved by Sponsor and Ethics Committee, and in participant information, we specified that only the research-focussed, University of Manchester-based members of the research team would be able to access full data sets.The research-focussed team members were RP and DF (academic researchers with PhDs in health psychology) and AD (a research assistant trained in health psychology and research methods to MSc level). These individuals had methodological expertise suitable for designing and running this study, as well as relevant academic interests. RP’s research focusses on psychological factors impacting experiences of medical procedures such as surgery, and DF focusses on increasing physical activity in older adults. AD had previously worked on a project investigating an intervention aimed at increasing physical activity in older adults in Greater Manchester. Data collection was led by AD – she conducted all patient interviews - and analysis was led by RP. AD, RP and DF had no pre-existing relationships with any of the research participants.After completion of data collection, but before analysis was complete, RP received a cancer diagnosis requiring major surgery. This impacted the timeline of completing data analysis and writing up the research, and also expanded the perspective RP could take given this broadened personal experience. The cancer was not one of the three types which routinely led to referral to the prehabilitation programme, but did provide RP with first-hand experience of the impact of a cancer diagnosis requiring major surgery and the challenges of managing a full-time job alongside arranging cover for sick leave, attending multiple hospital appointments and making decisions about treatment options. RP could not imagine how she would have been able to manage prehabilitation on the run-up to surgery, although she may have welcomed post-operative, rehabilitative support, particularly given restrictions on standard care caused by the ongoing COVID-19 pandemic.During the analysis, RP regularly questioned how her own cancer experience was impacting on her relationship with the data. She feels that it may have enhanced her empathy with the non-engager participant for whom participating in prehabilitation seemed unrealistic, and made it seem particularly important that in a sample consisting predominantly of engagers, the voices of the two non-engagers were not lost. Overall, we feel that having this perspective within the research team added to the multi-disciplinary nature of the team: we had a cancer patient at the centre of the research and analysis process, alongside the perspectives of professionals involved in programme delivery and independent researchers.