Patient and Public Involvement (PPI) on a pain and frailty study - reflections on involvement, engagement, and impact 

The The ARC Yorkshire and Humber supported Pain in Older People with Frailty (POPPY) Study is a 3-year NIHR-funded study hosted by Bradford Teaching Hospitals NHS Foundation Trust (commenced April 2022). The study aims to provide service guidance to improve access and support for older adults living with frailty to better manage their pain. This mixed method co-design study https://bmjopen.bmj.com/content/13/6/e074785.long includes in-depth interviews with older adults living with frailty and persistent pain to better understand the impact pain has on their lives and their interactions with healthcare professionals about their pain. Many older adults with frailty receive limited support for their pain, and the POPPY study will attempt to understand why.

To support the POPPY study, we have established a bespoke Patient and Public Involvement (PPI) group comprising older adults who live with persistent pain or care for someone living with persistent pain. There are currently seven members (two men and five women) who were recruited via a PPI engagement event at Bradford Royal Infirmary, a GP surgery patient participation group, and via PPI members involved in other departmental studies. 

Modes of involvement and engagement

As outlined in the NIHR report, https://www.nihr.ac.uk/documents/next-steps-for-partnership-working-with-patients-and-the-public-engagement-report/28566 which focuses on partnership working with patients and the public, it is important to take a personalised approach to suit individual and group requirements.  As such, we have offered flexible options for involvement. 

To date, most meetings have taken place face-to-face at the hospital. We initially offered the option of remote joining (via Teams) for those who preferred this option. However, after a couple of hybrid meetings, it was clear that this platform was not very productive with this population and resulted in some members feeling excluded or disengaged; some members live with hearing loss and hybrid meetings were challenging for those on the end of the camera as well as those in the room. As a result, individual online meetings and home tasks were arranged for those members unable to attend in person. 

In addition to face-to-face meetings, outreach sessions have been conducted in members own homes. Home sessions have included mock in-depth interviews to test the topic guide prior to going live with real participants. One mock interview was conducted with a member and her husband who was living with persistent pain, so researchers could practice conducting dyadic interviews. Another mock interview was conducted online. Again, so researchers could refine their skills and get feedback of the challenges of using this format with older adults before ‘going live.’ 

Recently we split the PPI group into two smaller groups. One group supported the development of case study vignettes from anonymised participant interview transcripts to be turned into illustrations. Another group contributed to qualitative data analysis of anonymised interview transcripts. Working in smaller groups has proved more productive and effective. These groups were convened at the hospital (in-person) due to the nature of the activity (which involved participant data). 

Challenges to involvement and engagement

There are many considerations to engaging well with a PPI group, particularly with older adults living with persistent pain and frailty. Some members have multiple health conditions and may struggle to attend all the meetings at the hospital and require home visits or meetings in their local communities instead; and the challenges of finding hospital car park spaces should not be underestimated! Furthermore, older adults often have caring responsibilities and researchers need to provide flexibility. 

Researchers need to be aware of health or wellbeing issues that might impact a particular member. Keeping in contact outside of meetings and having an effective communication channel with members ensures information flows both ways. For the POPPY study, there is one dedicated researcher responsible for communicating with the group between meetings and all members are aware of who to contact. 

It is important to plan the sessions to ensure there are sufficient comfort breaks and time for the group to share their own personal experiences. Specific tasks may need breaking up into smaller chunks or completed over multiple sessions and it has been necessary to adjust and revise some activities which have initially been overly ambitious in their aim. 

Benefits to involvement and engagement 

All members have experience of living with pain or caring for someone with pain and have a wealth of knowledge to contribute. A strong camaraderie within the group has developed and members report that they have made friends and have enjoyed talking with others who experience pain; the group appears to provide a form of peer support for some members, even though this was not its remit. Members report that they enjoy participating in different activities, find them meaningful, feel their input is valued and feel well placed to contribute to the study. Over time, group members have grown in confidence; it can take time for peo-ple to speak out confidently in a group setting. 

Impact 

The POPPY study is now over half-way, and we have asked our dedicated PPI group for their time and expertise to work on many aspects of the study, including reviewing participant information sheets, interview topic guides, development of case study vignettes and contributing to data analysis. 

Their contributions have ensured that the study materials and tools are designed and conducted in a way that is acceptable to older adults living with pain. Furthermore, they have made us think about the issues facing older adults living with pain and shed new light on the analysis of interview data. 

We respect and value the contributions and hard work made by all our PPI members and would like to thank each of them for all their hard work over the last two years and for keeping the POPPY team researchers on their toes!  

For further information about PPI in the POPPY study contact: Nikki Harrison- nicola.harrison@bthft.nhs.uk

• This blog is by Nikki Harrison (POPPY study research fellow); Anne Grice (POPPY study PPI co-applicant); Christine Smith (PPIE Lead NIHR ARC Yorkshire and Humber).