Published: 19 February 2019
The NIHR expects different types of patient and public involvement (PPI) contributors to be involved in its funded studies. So how do you do this when you are researching homelessness? The Homelessness Research Programme in the NIHR Health & Social Care Workforce Research Unit at King’s College London has involved people with direct personal experience of homelessness as advisors relating to study designs and in commenting on study findings for many years. Over the years we’ve developed links with many organisations supporting homeless people, some of whom have been research partners or who have taken an advisory role. These links crucially help identify people with experience of homelessness who’d like to take on roles in research.
Our current study ‘Delivering primary health care to homeless people’ is exploring the effectiveness and cost-effectiveness of different ways of delivering primary health care to homeless people. We have extended PPI involvement beyond an advisory role, by training people with experience of homelessness to enable them to be involved in interviewing homeless people themselves. Initially, a few people we knew from previous studies helped advise on the research proposal. Once we were awarded the grant they commented on draft questionnaires and participant information sheets before they were submitted for ethical approval. We then advertised for peer interviewers at the Homeless Link expert advisory panel, and St Mungo’s Apprenticeship Scheme. We aimed to involve six-eight people so if someone couldn’t continue, others would be available.
So how does it work in practice?
One aim of the study is to find out why some homeless people are not using the primary health care services in our case study sites. In each site we’ve identified hostels or day centres supporting homeless people whose service users are not accessing the primary health care service we are evaluating. We arrange a day to visit these services – planning well in advance, so the staff can book us rooms and advertise the study. When we arrive, we find out who is interested in taking part and then the peer interviewers talk to the users and, with consent, carry out a one-to-one interview using a structured questionnaire – writing down the responses. The questions focus on identifying health issues and treatment, and where the person obtains primary health care, if at all. They are then asked what they know of the case study site and why they don’t use it. There is always a researcher on hand, so the peer interviewers either work alone, or with one of the researchers alongside them for support if needed.
The challenges
Involvement doesn’t come without its challenges. Paying an appropriate fee to a peer interviewer who may also be claiming welfare benefits can complicate things. We know from our previous research, Rebuilding Lives, just how traumatic dealing with financial difficulties and the benefits system can be for someone who has experienced homelessness, and how it can contribute to debt and its associated problems.
Our study has experienced some delays and an 18-month funded extension means it has now been running for over four years. As might be expected, some peer interviewers now don’t have time to work with us because they may have got a job or have other commitments. This highlights the importance of having a pool of interviewers available. Our peer interviewers are incredibly committed to the study. Their own past experiences of homelessness mean they bring great understanding, and depth of knowledge to their interviewing. One peer interviewer says:
"When I tell a person that I’ve been homeless myself, there’s often a visible change in their demeanour, as if a burden has been lifted. Although everybody’s story is unique, that shared experience creates an immediate connection. That’s why peer interviewing works...it’s empowering! When the barriers are down, people find their voice. At times, it can be hard to hear these stories…but we must never stop listening."
Learning from experience
So, what have I learned from this experience as a researcher? I think it is really important to be clear about what peer interviewers may expect from working on a study at the outset, so everyone understands just how challenging a study can be. There can be much waiting around and sometimes distressing encounters. There may be problems along the way such as delays to fieldwork and arrangements can fall through. It’s essential to communicate regularly with progress updates, especially during periods where there is not much work for them as it may seem that nothing is happening.
Spending time together on fieldwork is not just about doing the work – it helps you to get to know your colleagues. A train journey to a study site, providing one-to-one support and training during fieldwork, sharing meals together, and providing reflection sessions between fieldwork days, all help to build goodwill and share experiences.
- Louise Joly – Research Fellow
For further information about our study Delivering Primary Health Care to Homeless People contact Maureen Crane maureen_ann.crane@kcl.ac.uk
We can also be found on twitter @hscwru and on the King's College London website.
More information on the study is available on the NIHR Journals Library website.