In this blog a Lived Experience researcher reflects on the nature of the ‘peer’ in peer research. It is the latest in a series of personal reflections by McPin researchers on the use of lived experience of mental health problems in research published as part of our week on Patient and Public Involvement in Research. You can find all of the other content from this week here.
A peer is person with whom one shares common experiences.
Within mental health, peer support is a popular and powerful complement, or alternative, to traditional medical approaches to care. It can be described as the mutual exchange of support between peers and considered ‘a natural human response to alienation and adversity associated with being given a psychiatric diagnosis’.
It can also be a valued response to those alienated from a community where mental health is understood from a different, non-medical, paradigm. Within my own south Asian culture, diagnoses are seldom talked about.
Depression is a catch-all term for mental health problems. Traditional treatments are sometimes associated with rudimentary religious practice and ritual. Lemons and chillies are considered as palliative as a pill. In this respect, peer support can provide an alternative to old school stigma.
Peer support creates a common ground for those that feel marginalised, isolated, and different. A little Bo Peep for all the black sheep among us.
The most common phrase I hear when talking about peer support is ‘I have found someone who gets it’. It is motivated by compassion, and relationships of this nature embody aspirational and timeless human values such as equality, respect and tolerance. Its effects can be transformative.
I have participated in mental health peer work for five years. First as a volunteer for my local Mind charity, then as peer support worker in the NHS and now as a peer researcher for The McPin Foundation, evaluating a national programme of community-led peer support called Side by Side.
This would make me a relative ‘novice’ in the field that has a long history and continued progression. Nevertheless, it has given me ample food for thought on what it means to be a peer.
Questions my experience brought up for me
Is there a ‘pure’ definition of what a peer is and does? Does commonality of experience have to be as specific as a shared mental health diagnosis to create a meaningful relationship?
Does working as a peer one to one, in a structured environment such as the NHS and being paid, dilute the nature of ‘peerness’ beyond recognition? Is peer support about the individual or social justice? Do you have to talk about your mental health to be a peer?
During my time at McPin, I have met established peers who have challenged my work on a ward, declaring it not ‘real’ peer support. This was hard to swallow.
As the peer movement evolves and grows, it is going to attract younger people with limited knowledge of its roots, but who still want to impact positive change through the filter of their own lived experience and the mechanisms that offer the opportunities to do so. This shouldn’t, and I don’t believe it does, detract from its spirit and purpose.
The setting of the support, the audience sharing it, the intentions of those who organised it add layers of nuance and texture. Peer support is the Ben and Jerry’s of mental health. Morish, successful, new flavours come along every month yet the cream and ice are always essential to each blend.
A few months ago, I attended a workshop at the Institute of Mental Health in Nottingham about narratives, story-telling and disclosure to help me reflect on my own identity as a peer, especially as a researcher. I want to know how I use the qualities inherent to peer working in a research setting.
An essential characteristic of all my peer roles has been lived experience of mental health difficulties. But alone this has never proved enough. It is how you use your illness narrative that counts.
In my experience of peer support, the more you give, the more benefits you reap. But when I say giving, I do not mean sharing your mental health story. It is more intentional and affirmative than that.
I feel it is about creating a space to enable others to express a narrative that may not be recognised in the community they inhabit – clinical or otherwise. A narrative beyond diagnosis, risk assessments or ignorance.
So to give in this sense is to offer the intention of acceptance and hear someone else’s story without judgement. To do this, one has to have accepted, without judgement, their own illness narrative.
When I worked in a clinical setting as a peer support worker, my line manager told me that colleagues feared the stress of the ward would cause me to relapse. Others subtly expressed that my experiences of mental ill health did not qualify me for employment or expertise in mental health.
To them, I would like to say: I agree that the experience of illness is not enough to denote expertise. It is so much more.
To be an expert by experience you need an insight into your experience. You need to feel comfortable in your own skin, comfortable with your mental health history, confident to express it in a mindful way, resilient in the face of discrimination, compassionate to the suffering of others, willing to tolerate and, sometimes, challenge stigma as well as having some experience of navigating a mental health system from a user perspective.
For me, these qualities denote the expertise of experience in peer work.
As a qualitative peer researcher, these values still hold true. However, expertise of mental health experience is equally weighted with academic and/or experiential skills of research. Both are necessary.
The McPin Foundation exists to transform mental health research. The involvement of service users in mental health research and service design or delivery can sometimes be tokenistic or ill-conceived, which then further alienates the people it seeks to help, perpetuating the cycle of illness.
This is something I experienced first-hand working as a peer support worker on an acute mental health ward. It was so ill managed, I eventually had to quit. As a research organisation, we want to minimise such negative experiences by ensuring the narratives of those affected by mental health services are intentionally and fully represented by those who design and deliver services, thereby improving how they run in the future.
One way of understanding these narratives is through the interview process. Interviews provide an opportunity for rich, detailed personal stories to be voiced, but they are an unnatural situation where two people are not meeting as equals.
The researcher traditionally presents as an objective seeker of information to whom the interviewee responds. One seeks knowledge, the other provides it, creating an imbalance of status. Identity can also shape the relative weight of influence. Age, gender, sex, accent, dress, status can all impact what narrative reveals itself.
In evaluating the Side by Side programme, we have learnt how important equality is to peer support – non-directional, non-clinical, non-hierarchical support among people who share mental health difficulties.
As a peer interviewer, the sharing of this aspect of one’s identity can also help to lessen the power imbalance. I sometimes share I have a mental health difficulty at the beginning of an interview, to help people feel at ease.
Again, it is not the time to divulge my own narrative and my rule of thumb is less in more. During the interview, if I can relate to personal experiences the interviewee speaks off, I will acknowledge the commonality. If they get upset, I offer space and reassurance. If they ask questions, I respond honestly. If I feel there is something I can support them with, I wait until after the interview is finished and then have a conversation about it. Throughout the interview, I maintain the intention of non-judgement.
So what of mutuality?
I earlier spoke of how peer working operates as a dialectic, where the more you give, the more you receive. What does that feel like in peer interviewing?
I cannot know the extent to how interviewees are effected by the experience, but verbal feedback I have received indicates the process can be cathartic. An outlet to speak one’s mind without repercussion or judgement.
It can provide a neutral space to reflect, sometimes inspiring novel ways to interpret one’s experiences of mental health. I have heard comments such as ‘Oh. I never thought about it in that way before; or ‘No one has ever asked me that’.
Every interview with a peer has cultivated positive regard. I am grateful that individuals are willing to share difficult and personal stories, many of which have helped me gain perspective on my own mental health.
I am often humbled by how interviewees instinctively value the importance of our research. I am inspired by how, despite living with mental health problems and being faced by multiple barriers, hope is still alive.
