Good practice when researching people with mental health conditions- a snapshot of the first CMHHR seminar!

Have you ever felt a gap in knowledge on best practice when researching people with mental health conditions (MHCs)? As a junior researcher in this area- I certainly have! And I know many of my colleagues have as well. It’s a gap which hasn’t been filled thus far by other, more general skills courses- as after all, there are some more unique factors involved in researching people with MHCs which not everyone has knowledge or experience of.  But fear not- the Centre for Mental Health and Human Rights (CMHHR) have answers! After the festive period of excessive eating and celebrations, they hosted the first of their seminars on this very topic, where we heard from three researcher with first-hand experience- there to offer help in a Q&A. I know what you’re thinking- I can’t believe my Christmas wish came true! How did you know!?! Well if you missed it, not to worry, I’m here to provide a run-down of key points to take away.

First, to introduce the panel members. They included Amanda Keeling from the University of Leeds who did an ethnographic study of social workers- which incidentally involved ethnography of people with MHCs; Jack Tomlin- a fellow PhD researcher here at Nottingham whose research involved interviewing people in a secure mental health facility; and Ben Clubbs-Coldron, also a fellow PhD researcher at Notts- who interviewed people with MHCs in rehabilitative mental health facilities.

Some of their key points of advice I know I’ll be taking away! And broadly they include questions around informed consent, our duty to participants, preparation and more practical advice.

Informed Consent

Amanda expressed how informed consent isn’t always as straight forward as we’d like to think. When working in a busy field- as she was with social work, she often gathered it quickly, opportunistically in some quite stressful situations and at the behest of the social workers. She explains how some people hear and agree to the information needed for informed consent, but don’t truly hear it. If she had her time again, Amanda said she’d be more assertive in the conditions needed for the informed consent and reminisced about how in one notable instance, she removed information on a participant whom she felt wasn’t truly consenting when she went on the client visit with the social worker. All researchers emphasized the importance of researcher intuition and discretion when gathering consent from people with MHCs. After all, part of our job is being trusted to do the right thing!

Duty to Participants

For people with MHCs in mental health facilities who have routinized daily activities and may have been living there for many years- having a researcher enter their lives is a big deal! Over the course of Jack and Ben’s interviews they built relations with their participants, and Jack noted how residents’ faces would light up when he visited the facility! Exiting an environment like that when people have begun to like having you around, should be just as carefully thought out as how you go about entering. Keeping participants up to date with your research, sending them your transcripts and initial analysis, and respecting that they give you an insight into their experiences- their life, was recommended.

With regards to balances in power relations, it’s important to remind participants that you’re not a member of staff and work independently- therefore they won’t be punished for anything they tell you.

Prep and Practical Advise!

One of the first things Ben flagged up in his advice was to take the preparatory classical literature on interviewing people with MHCs with a pinch of salt! In some ways it alienates this group and he urges us to remember that they’re fellow human beings. Jack advised that people wanting to work within secured facilities should factor in the extensive safety training needed before you’ll be allowed access-and to factor that into your time scale. He also reflected on how some interviewees tended to go on long and sometimes delusional (although revealing) tangents, whereas others gave little more than one word answers. He recommended having two sets of question sheets to hand. One for bringing tangents back on track- grouped my main themes or with a significantly reduced number of questions; and the other with more detailed questions for those who don’t give much response.

Some of the topics researched were sensitive and caused participants to become upset. This is something predictable in most interviews but may be more likely/severe for people with MHCs or those living in secured facilities. All researchers remind us to remain human and sensitive to the feelings of participants, whilst not breeching professional boundaries. A tip on how to do this came from Jacks first-hand experience of a participant getting upset in an interview. He gave the interviewee time to experience those emotions, asked if he would like to take a break or end the interview for the time being or altogether. This allowed the interviewee the time they needed, and provided them with time to collect their thoughts before carrying on the interview (if they so wished.)

Of course this was just a snapshot of what was discussed but hopefully it has helped give some ideas to researchers either get getting into, or hoping to get into, this area of research!

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This post was written by Grace Carter. Grace is a PhD student whose research focuses on a reformulation of advance planning for people with mental health conditions under the Convention on the Rights of Persons with Disabilities

Clare Knighton: The challenges of co-production- A Peer Support Workers Perspective

It’s really important that we as service users and patients can talk about service experiences, share common ground and negotiate service improvements together. This, to me, is the essence of co-production: making meaningful change together. However, to do this well takes time and effort all round.

Co-production isn’t, or at least shouldn’t be, a tick box exercise and whilst it may add more time onto a project, the outcome of a better fit-for-purpose service is worth the effort.Often there is a lack of time for people implementing new changes to circulate information about involvement opportunities. True co-production takes time, detailed conversations, time to ‘think’ (often left out of NHS change projects) and just general involvement and communication.

I believe that many people do want to involve patients and service users, however, it can sometimes appear tokenistic – usually due to lack of time. For my own experiences I feel fortunate to have been involved fully in several changes that have taken place in my Trust, however, I know there is always more to do.

I sit on the community engagement panel and have seen first-hand how our involvement has given fresh thinking and ideas to upcoming projects. Our ‘fresh pair of eyes’ often uncover things that haven’t been thought about which clearly help bring about more robust, patient focused changes.

Co-production will be on the NHS’s agenda more and more and will eventually become ‘business as usual’, but until then, we need to think clearly about involving those whom the service directly affects – ‘no decision about me, without me.’

Clare Knighton

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Clare Knighton is an accredited peer support worker based in Worcestershire.

@knightonstar