Peer research is a distinct type of service user involvement extending the expertise of lived experience into research. In peer research people with direct experience are involved in designing, delivering and shaping research (Revolving Doors, 2016).The Homelessness Research Programme at the Social Care Workforce Research Unit is currently running two research projects involving peer researchers. The first is looking at specialist primary care and the second at hospital discharge arrangements for homeless people. Both projects recently ran training and induction days for their peer researchers. In this blog James Fuller and Alan Kilmister (Peer Researchers on the Hospital Discharge Project) describe how they became involved in peer research, how their experience can make a difference and why striving for impact and change must be at the heart of this kind of participatory methodology. (1,372 words)
James: I am currently working as a support worker in a ‘day centre’ for homeless people in London. The main motive for throwing myself into the hospital discharge research project is a strong sense of righteous indignation at the way the people who use our service are routinely returned there by hospital staff who should know we have no accommodation – the clue is in our title!
One man has been delivered to our car park three times this year, on two occasions in a taxi, always clutching his transparent bag of medicines and still wearing his ward wristband. All we can do is get him to see our wonderful specialist nurse at the earliest opportunity (she can only fit us in one day a week) and use our best first-aiding to tend any wounds.
In the dark days I was myself discharged from hospital detox onto the street, which meant I couldn’t access even daytime rehabs, not having a secure address in what had been my local borough for more than five years. I was back in detox six months later. In the interim I was put out of the Emergency Investigation Unit of a well-known London hospital in pretty short order and with nowhere to go. Such experiences stick in the mind.
Last night I heard of a young ex-offender who is languishing in a hospital bed two streets away from my home with pneumonia. She was released from prison less than two weeks ago with a travel warrant, the statutory £46 discharge grant and nowhere to go.
Thinking about her situation reminded me of a testing discussion we had at our recent induction/training day about some of the ethical issues raised when peer researchers are involved, especially those who like me work with homeless and vulnerable adults. The obvious danger is that a day job mindset will kick in so that one will be tempted to advocate for the interviewee. This might affect their subsequent views of the post-discharge process and thus distort the research. It will probably be necessary wherever possible to withhold one’s occupation from interviewees who might otherwise expect such intervention, but this may not always be sustainable. In any event, we concluded in training that provided full disclosure of an intercession is made it can be factored into the overall research results.
Paradoxically, hands-on experience of service provision is also central to what is perhaps the real value of peer researchers. Being at the sharp end every day, we are likely to encounter or hear tell of a host of homeless people’s hospital experiences, good and bad, that can enhance the work of our academic colleagues.
A second benefit, which purists might also consider a distorting influence, (and positivists will abhor) is our lived experience. This enables us to feel as well as interpret interviewees’ narratives when out mentoring our university-based counterparts. The knowledge that we are fellow travellers is likely to encourage participants to engage in the research with confidence and openness. Conversely, our backgrounds should deter embellishment under the old adage about not being able to con a con artist.
Trust, like humour, which all human beings need to survive is often in short supply on the road. The fact that interviewees will know that we ‘get it’ and are laughing with and not at them over some of the absurdities of their lives should enrich the outcome and give our professional research companions a particular awareness of a complex and often contradictory world.
Chronic social exclusion in all its forms is a huge aspect of being street homeless that needs to be experienced to be understood. Frequently, it’s not so much the obvious as the apparently little things that hurt. For example, perhaps it is easy for the housed to imagine what it’s like when no one uses your name, sometimes for days on end, but they cannot know how depressingly isolating it is without having had the experience. Hostile nursing is definitely counter-intuitive; male patients routinely fall for these angels of mercy, at least in films. There is no feeling the love for people who are street homeless, particularly those who are widely perceived as absorbing scarce resources in the treatment of ‘self-inflicted’ health problems, i.e. relating to drug and/or alcohol misuse. Even when we present with non-misuse causes we are routinely disbelieved. Late in my drinking days I was rushed into A&E after receiving an electric shock that caused violent convulsions and rendered me unconscious. After a cursory examination that failed to reveal an exit wound, the triage nurse determined that the real cause was an alcoholic fit and discharged me. Three years later residual damage to the rear left quartile of my brain consistent with a hefty electrical charge was discovered. Readers may draw their own conclusions.
As a peer researcher I want to see wholesale change in the way homeless people’s hospital discharge is conducted as a result of this project, not just a matchless research paper. I hope that publicising this issue through the research will at least raise people’s consciousness of the problems. If enough of the electorate share our sense of outrage at this manifestation of the unequal treatment of society’s most disadvantaged, those in power might just feel moved to action. We live in hope.
Alan: In the very early days of been invited to be a member of the Peer Research Group on Hospital Release for homeless people, I promptly ended up in Hospital myself having been bitten by a dog. It got worse despite medication so I had to go to the hospital to have it opened up and cleaned out. The project leader thought it was highly amusing and told me that I needn’t have gone that far to carry out research.
In hospital I was asked by one of the nurses what type of dog I had been bitten by, to which my reply was ” It was a Collie flower” I think the flower part must have arisen because of my been born in Yorkshire. I think it is very important to have a sense of humour, as that, along with the face of trust goes a long way in getting the response required when carrying out research.
I am a great believer in people with lived experience been part of research, I myself went through a stage of been homeless and involved in drug misuse. I found that the attitude of those been interviewed changed and they became more open and were happy to answer questions, when we told them we were service users too.
Recently I was able to visit one of the discharge projects for homeless people that will be involved in the research. Along with the researcher I was able to carry out a pilot research interview with a homeless client who had just been released from hospital. We very quickly were able to gain his trust having told him about myself having gone through homelessness in the past, on top of that it cropped up in conversation that we both had a military background and this also helped. Everything ran smoothly as the connection was there.
I am really passionate about service user involvement and helping those with issues of homelessness, drug and alcohol, mental health and others, is what I enjoy doing. If I can help them in any way gives me great satisfaction, and makes everything worthwhile.
The Homelessness Research Programme at the Social Care Workforce Research Unit in the Policy Institute at King’s
There are two major studies in progress in the HRP at present:
Delivering primary health care to homeless people: an evaluation of the integration, effectiveness and costs of different models (2015-2018; PI: Dr Maureen Crane)
Effectiveness and Cost-effectiveness of ‘Usual Care’ versus ‘Specialist Integrated Care’: A Comparative Study of Hospital Discharge Arrangements for Homeless People in England (2015-2017; CI: Dr Michelle Cornes)