PPIE with care home residents: A new approach

Kerry Micklewright and Anne Killett – University of East Anglia

 

Interest in Patient and Public Involvement and Engagement (PPIE) – a term to describe how members of the public, including those accessing health or social care services, work in partnership with researchers to influence how research is done (and ideally, what research is done) – has grown over the years. Its inclusion in studies has become a core expectation of those funding and publishing research, and researchers are encouraged to embed public involvement throughout all stages of their work. PPIE is distinct from individuals acting as research participants; it gives members of the public the chance to go “behind the scenes” in research, though what this looks like varies hugely between different studies. However, while there is a growing body of advice, case studies, frameworks and publications about PPIE for researchers to draw upon, designing and achieving meaningful PPIE is often challenging in practice, particularly when important public stakeholders might need additional support to be able to contribute.

DACHA study relates to how the collection, recording and secure sharing of care home resident data between care providers could enhance care. Given that residents’ data and care are central to our study, the DACHA team recognised from the outset that residents are key stakeholders in our research who should have the opportunity to influence what we are doing. We believe the voices of residents represent a valuable source of knowledge and lived experience, distinct from those of other important stakeholders (such as family members and care home staff). Furthermore, as research often feeds into policy and how future care is planned and carried out, we knew it would be important (and ethical) to ensure that residents had the chance to be a part of the study, able to ask questions and challenge our assumptions.

Initially, the DACHA team had planned to complete PPIE by starting up two residents’ groups at care homes within Norfolk (where part of the team is based). DACHA researchers would go into the care homes and talk about the study, asking for advice from residents and checking that our plans seemed appropriate. We hoped to build a rapport with residents and keep these groups going as the project progressed.

However, the onset of Covid-19 soon meant these plans had to change. As visiting restrictions were introduced, the research team could no longer go in as planned, and care home staff were understandably busy trying to keep residents safe and well. Not wanting to exclude residents, but struggling to see a solution, the team looked for other ways of ensuring that residents could still have their say.

As part of PPIE for DACHA study, we also hold a quarterly panel of care home staff, care home managers and friends/family members of care home residents, who meet to talk about our research and how best to complete it. One of the panel members made an interesting suggestion – that Activity Providers (also sometimes known as Activity Coordinators or Wellbeing Leads) may be able to help. Activity Providers, being based in care homes and continuing to work throughout the pandemic, could help speak to residents on behalf of the DACHA study researchers.

We made contact with the National Activity Providers Association (NAPA – https://napa-activities.co.uk/), who helped to recruit Activity Providers interested in giving this a try. With NAPA and the Activity Providers, we developed a new approach to including residents in our study as research advisors, with Activity Providers facilitating activities and discussion sessions with residents about our research on our team’s behalf. We decided that residents should stay anonymous, so Activity Providers gave no potentially identifying information to the DACHA study team – this way, residents didn’t have to worry about any confidential information being shared with researchers that they had never met face-to-face.

In terms of what sessions entailed, this varied by what Activity Providers’ felt residents might be interested in doing. Some residents took part in creative sessions, like making collages or paintings. Others preferred more formal discussions, either one-to-one or as a group, or opted to complete surveys to feed back their thoughts. One of the benefits of working in this way is that Activity Providers know their residents, and have ideas about how best to ensure those living with issues like visual impairments, dementia or fatigue can still contribute their thoughts; for example, breaking up discussions into shorter sessions completed over a series of days, using additional resources (such as scent pots or reminiscence materials) to enhance discussions or choosing a time of day that works better for residents.

We talked to Activity Providers as the study went on about how they were finding this approach. As expected, there were positives and negatives. Activity Providers said that they enjoyed doing something different and had learned new things about their residents through doing the sessions. This sometimes led to changes to how they (or the care home that they were based in) did things; for example, one care home decided to change the process through which residents were made aware of upcoming healthcare appointments, as residents reported that they felt this was not clear. Another care home arranged for a resident to visit an important place that they had wanted to go to for some time but had not previously told the care home about.

This did however sometimes mean additional work for the Activity Providers, who were already busy. Discussions sometimes became emotive, or opened the door for less positive feedback, which can be difficult to hear (though Activity Providers did their best to explore and respond to it). Scheduling activities at busy periods for care homes (and Activity Providers), such as December, didn’t work well. For the research team, it was also sometimes challenging to design activities for residents that they had never met, particularly for more technical or complex topics.

However, the experience appeared to be a positive one for everyone overall; importantly, the DACHA study team was also able to get feedback from residents relevant to the study, which has influenced our decision-making and how we have done our work.

Our funders also felt that this approach to involving residents in research has promise, so they have kindly funded a follow-on study to further explore it: https://arc-eoe.nihr.ac.uk/research-implementation/research-themes/inclusive-involvement-research/chappi-care-home-activity

We are very thankful for all of the residents, Activity Providers, NAPA management team members, PPIE panel members, DACHA team members and others who have been involved in developing this approach. To find out more about it, an open-access research paper is available here: https://rdcu.be/dvGZb

 

Funding Acknowledgement and Disclaimer

This study/project is funded by the National Institute for Health and Care Research (NIHR) Health Service Research and Delivery programme (HS&DR NIHR127234) and supported by the NIHR Applied Research Collaboration (ARC) East of England.

The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.