By Grace Carter, PhD Researcher at the University of Nottingham partnered with the Institute of Mental Health
Twitter: @GraceCarterECR
[Image by bastamanography]
As a researcher conducting empirical research for the first time, the learning curve is steep.
What’s more, for those of us conducting empirical research involving persons with mental health difference, there are many things methods courses and readings cannot prepare us for. While universities offer a wealth of qualitative research training and there exists ample reading on the theory of methods- some specific to persons with mental health difference;[1] there is a gap in literature on the practical realities of actually carrying out research with this group for the first time. This is not to say research involving persons with disabilities is radically different or scarier than researching any other group. On the contrary, this is certainly not the case. However with this group come unique qualities, which an awareness of will stand you in good stead for fostering better research governance.
Therefore in spite of all my methods training, there were some more practical tips I discovered along the way, which I wish I’d known earlier. This blog therefore offers 3 of my top tips on conducting research with persons with mental health difference, all of which I learnt during the process of conducting my own research. For context, I conducted both focus groups and individual interviews with persons with a wide variety of mental health experience, in the second year of my PhD.
Be Prepared!
This first tip is rather a given, but of great importance nonetheless. Even if you cannot find mental health specific research training, attend as many training sessions as you can specific to your methodology, and ask the convener questions which may be helpful to your research on mental health more specifically. To supplement more general advice, ask researchers at your and other institutions, who have experience with empirical mental health research. Take advantage of your existing networks via an academic social media account, emailing colleagues in the same field, and by consulting your supervisors/mentors. Finally, if no training exists, it may be possible to create your own. Resources and connections permitting, consider contacting your host institution or research centre and offering to organise a seminar or panel session on mental health research. Consider inviting fellow PhD researchers who had already conducted their research and mentors from other universities, to speak about what they learnt from their experiences. This may not be an option for all, but consider thinking outside the box and creating training solutions for yourself- after all this is your research!
Consult Persons with Mental Health Difference on What Makes for Good Research Practice
You may know people or have contacts through research centers or organizations, with first-hand experience of mental health difference and (if you’re really lucky like I was,) who also conduct their own research. If you do, invite them out for a coffee, send them an email or set up a Teams meeting to ask them what makes for good research practice. I personally was given some great advice- two of the best tips being in regards to allowing yourself and participants time during research to feel emotions and be comfortable with them, and to always end emotive or sensitive research on a positive. The first was a particular concern of mine- in regards to how I should handle myself if a participant becomes emotional, and how to tread the line between being professional and sympathetic. The advice I was given was to allow emotion to be felt, to remember that this was natural and human, and therefore not to rush on with the next question so as to make the expression of emotion taboo or uncomfortable. Allow the participant some time to feel that emotion, carry tissues(!) and ask them, when appropriate, if they are ready to move on. Regarding ending on a positive note, I enacted this by taking some time after the research had concluded and the audio recorder was turned off, to compliment each participant individually on the value of their contribution. I therefore went beyond a simple thank you, to commenting on how their deduction or reasoning was of particular interest. It’s also worth taking the time to ask participants how they will be getting home and whether they need assistance i.e. help calling a taxi. These steps at the end of research really helped bring participants back from what can sometimes be a highly emotive or distressed state. Both of these tips therefore proved invaluable in practice when I undertook my research.
Another area for consultation more specifically, is on your use of language. This is something I was made aware of from my first disability law course on the Social Model, but is something worth re-iterating here for the purposes of research. I asked my participants whether they had a preferred way of being referred to i.e. persons with disabilities, disabled people, persons with mental health conditions etc. I had my own preferences which helped narrow down the selection, however it was the recommendation of one participant- ‘mental health difference’- which was chosen as my preferred term throughout research. Use of language is key to disability research, therefore consultation with your participants on how they wish to be referred to is very important.
Ensure you have a support system in place for you and your participants
It is vital that you conduct research within an established institution with access to additional resources or an institution with relevant mental health support services. The research site- where the research is held, should therefore be selected with this in mind. This is in case participants disclose during the course of your research, that they intend on self harming or committing suicide. Unfortunately this occurrence is a reality for mental health research and needs to be prepared for, both psychologically and in terms of the steps you need to take to protect that participant and yourself. Having a separate section in your risk assessment planning what steps you will take if this occurs, is therefore key. The research site will play a large role in this- in regards to having the resources and know-how to assist you. It may also be worth discussing what to do in this situation with your supervisors/mentors in terms of what steps you are required to take- not only to fulfill the requirements of your relevant ethics committee, but for good research governance.
Another brief note on support is to ensure you promote self-care and consider taking some time off after research has concluded. Something which I encountered, but was unspoken in training and reading, was how emotional it can be to conduct research with some highly vulnerable individuals who I could not immediately help. I therefore recommend taking some time off after concluding research, to digest this experience and return a professional but human researcher.
[1] For the theory of methodology specific to involving persons with mental health difference, see for example Sarah Peters, 'Qualitative Research Methods In Mental Health' (2010) 13 EBMH.; Vesna Zupančič, Majda Pahor and Tina Kogovsek, 'Focus Group In Community Mental Health Research: Need For Adaption' (2019) 55 Community Mental Health Journal.; and Jerry Tew and Nick Gould et al, 'Values And Methodologies For Social Research In Mental Health' (Social Perspectives Network 2006) <https://www.birmingham.ac.uk/Documents/college-social-sciences/social-policy/IASS/publications/social-research-mental-health.pdf> accessed 7 December 2020.