As part of our commitment to building capacity in health services and social care research we were delighted to announce our Innovation in Inclusion Award Winners at our summer conference. Supported by the Health Services Research National Specialty Group in the NIHR Clinical Research Network these were awarded to recognise good practice and innovation in research methods which increase participation and inclusion in health services research studies. With the call for abstracts for our 2023 conference now well underway we are pleased to share a blog from more of this year's winners: Dr Andy Northcott and Prof Katie Featherstone.
Older people living with dementia are one of the largest patient groups admitted to NHS hospital beds. Official estimates vary but suggest somewhere between a quarter to a third of all hospital beds are occupied by a person living with dementia, although their dementia is rarely the primary reason for their admission. Despite this, NHS hospitals still fail to organise and deliver care to meet their needs, and instead as a patient group they face systemic inequalities in care, leading to poor experiences and outcomes.
A central focus of the research we carry out at the Geller Institute of Ageing and Memory has been on ways to address this. To do this we have used detailed research methods to understand the experiences of people living with dementia during and after a hospital admission, and including their lived experience, their views, needs, and fears, throughout our research.
This process of co-producing research with people living with dementia to improve the care they receive dates back to 2015. Our Director, Prof Katie Featherstone, serendipitously attended an afternoon meeting with people living with dementia, their care partners and families, and was shocked by their concerns and distressing experiences of hospital care that were discussed. As a result of this initial meeting, the involvement of people living with dementia and their care partners has remained key to the ongoing research of Prof Featherstone and Dr Andy Northcott. The poor care outcomes that people living with dementia experience from a hospital admission are well documented, but it is only by involving those directly affected by these phenomena that we were able to understand some of the underlying reasons for the systemic inequalities they experience, shine a light upon them, and use our findings to inform care.
Our approach to patient involvement has grown and developed substantially since 2015, but it is there, with the assistance of a small but dedicated group, that we began our research journey. We wanted to move away from what we felt was the staid practice of meetings over weak tea and biscuits in community centres and university meeting rooms and make involvement in research something positive. Meetings were held over pub lunches, over city-centre coffees, and later when invited around for a buffet lunch hosted by group members. From these meetings the seeds of our research grew, identifying hidden and overlooked issues such as continence care and the serving of inappropriate food, as areas deserving serious exploration. We also got used to regular ‘telling’s off’, as our ideas of ‘plain English’ were a long way from what it should and needed to be.
The members of this group have stayed with us, with their names on successful (and some sadly unsuccessful) grant applications, as co-authors on published papers and NIHR reports, and as part of our media appearances to discuss our research findings. Their involvement also inspired us to grow. From these meetings a series of local events began. This in turn led to the establishment of regular Dementia Friendly Cinema events, where we involved larger groups of the public in discussions of the issues for research, however, these were a small part of what was a fun and enriching day out for people living with dementia, and for their friends and relatives. These events culminated in a ‘Festival of the Mind’, a one-day event where over 400 people living with dementia and their families had the opportunity to attend film screenings and enjoy a performance from the 100 strong forget-me-not choir, while also speaking to our team about their experiences of care and priorities for research.
While these events were happy ones, what became clear to us from speaking to people living with dementia, was that hospital was a care setting they feared. People feared that they would lose their dignity, that they would be trapped, and that they would be forgotten. As we started our second major study, exploring continence care, the message from these events stayed with us, in particular a day event held in a boutique hotel in Cardiff, which included the presentation and discussion of our early analysis and priority setting, along with lunch and afternoon tea, an art workshop, and a performance by a string quartet. During the art workshop, people living with dementia and their families produced stark and bold images and sculptures that brought to life the emotional impacts of their often hard to verbalise experiences of hospital care.
The findings of our most recent report on continence care identifying ‘pad cultures’ has struck a chord, and received considerable coverage on the BBC, informing a documentary by the award winning File on 4 team and we were asked to talk about our research on Radio 4’s flagship PM news broadcast. Following the broadcast, we have been approached by people living with dementia from all over the country and their families who tell us they recognise our research findings and reflects their experiences of hospital care. They also want to be involved in our research, which, in turn, has inspired us to run a wider programme of events across England and Wales.
We as researchers are also learning that the needs and experiences of older people can have significant cultural influence. We are now collaborating with third sector organisations with a focus on increasing the diversity of those involved in our research and research priorities. We are currently working with the charity Nubian Life to deliver culturally specific events to support the involvement of Afro Caribbean elders in the development of our research programme and priorities. A culmination of this led to a hugely successful event at Fulham Palace in London this year for their clients from the Afro Caribbean communities, which combined the start of their involvement in our research programme with an afternoon of live music and dancing.
If this all makes PPIE sound like something fun and frivolous that is because at times it can be, and needs to be, but the stories, experiences and insights gained from these events are very serious. These discussions guide all of our projects and our growing team, guiding our ethnographies, what we observe, and our interpretation of events and phenomena within our data. That data is something we feel also belongs to the people that inspired and encouraged us to collect it, and we return to our groups to share the data and early analysis as an ongoing process throughout each of our studies, listening to their responses and interpretations of it. It is through this collaboration with the very people effected by the phenomena that we research that we feel able to develop our analysis and use it to drive impact.
From the seed of that first meeting in 2015 we are about to commence data collection on our third NIHR funded hospital ethnography. Many of those who started that process with us are still working with us today, joined by new collaborators we have met along the way, acting as co-applicants, sitting on steering committees, and, then as now, holding us to account to ensure our research is accessible and relevant to them.