Developing stakeholder-informed guidelines for acceptable and safe research into suicide.
Mark Robinson MRCVS PhD Scholarship 2020 - University of Manchester
Supervisors: Dr Sarah Peters, Dr Patricia Gooding, and Dr Donna Littlewood
Lay Summary:
Central to ethical research is that it does no harm. Yet, we do not know what this means for research involving people with experience of suicide thoughts and acts. Previous studies have found that taking part in suicide research is generally positive. However some people can experience a short dip in mood afterwards. We don’t know how taking part in suicide research affects people in the longer term or the best ways of supporting research participants. We want to learn what are the most acceptable and safe ways of asking people about their suicide experiences, from participants themselves.
The aims are to 1) assess, from the perspectives of people with lived experience of suicide, how acceptable the different ways researchers commonly study suicide are; 2) find out what the long-term impacts are of taking part in suicide research and 3) develop guidance for researchers on planning and doing safe research into suicide.
Four studies are planned. The first will be a review of the previous research in this area. The second will use a ‘think aloud’ design that explores people’s views of different types of research tools (e.g. questionnaires) whilst they are completing them. The third study will use questionnaires and interviews to monitor the long-term impact of taking part in research about suicide. The fourth study will gather the views from different groups who are involved in suicide research (including people with lived experience, researchers, and ethic committee members) to find out what they think makes suicide research acceptable and safe. These data will be used to develop a set of recommendations for best practice. We hope these studies will teach us how to make sure future suicide research is of high quality and safe.
Aims:
1. To determine the acceptability, meaningfulness, and appropriateness of validated questionnaires used to measure suicidal experiences.
2. To investigate positive and negative effects of participation in suicide research over time.
3. To assess the acceptability and efficacy of mood induction techniques used to off-set any negative effects of participation in suicide research.
4. To investigate the views of key stakeholders with respect to participation in suicide research to inform best-practice guidance.
Research Student: Kerry Hozhabrafkan
Hello, my name is Kerry and I am due to start my PhD at the University of Manchester in October 2020. Following completion of a BSc in midwifery studies I worked as a midwife within a busy inner-city maternity unit and later as a trainee health visitor. An interest in psychology and particularly in mental health developed as a result of working closely with women and families as they navigated intense life experiences, leading to my decision to undertake an MSc Psychology conversion degree. My MSc dissertation was an exploration of women’s experiences of trying to conceive, utilising thematic analysis methodology. Through this degree I have been able to develop my research skills and have gained and understanding of how psychology research can be used to make a positive difference in people’s lives.
I am thrilled and extremely grateful to have been given the opportunity to carry out this project, focusing on participation in suicide research. I am looking forward to my research training journey, where assisted by the expertise and guidance of Dr Sarah Peters and Dr Patricia Gooding I hope to deliver impactful research outcomes in fulfilment of this scholarship award.
Progress Report Year 2, 2022
I began this academic year with a new work pattern, as I had switched to a part time pathway for the completion of my PhD. The bulk of my time early on was focused on finalising the ethics application for my two qualitative interview studies. Following submission and subsequent review, Health Research Authority approval and NHS ethical favourable opinion were obtained and the studies have been adopted onto the NIHR portfolio.
Piloting the interviews with experts by experience was an extremely valuable exercise. It helped me to evaluate the effectiveness of the study design and questions as well as to flag any potential ethical issues that could arise.
I am pleased that the studies are now open to recruitment and I have been working to promote them with the help of clinicians at the lead study site, as well as through professional networks, social media and online support forums. I am continuing to work with a lived experience advisory group to explore ways to create links with organisations and individuals to whom the research may be of interest.
In these studies I am investigating the use of suicide measures as well as exploring issues around discussing suicidal feelings in the perinatal period, from the perspectives of both women and healthcare professionals. In addition, I aim to understand more about the experience and impact of participating in such research for women. I am inviting women who are currently perinatal and who have had suicidal experiences at any time in the past to participate in a combined think aloud exercise/semi-structured interview, where they test a series of validated brief, self-report suicide measures. I am also collecting follow-up data at a second time point one week later via an online qualitative survey. Midwives and health visitors are being invited to participate in a single semi-structured interview.
These interviews are in progress and are being conducted both in person and virtually. In between data collection, transcribing and preliminary data analysis activities, I am working on study set up with new NHS trusts, to maximise opportunities to meet the recruitment target of 60 participants in total, and to enable engagement with a diverse sample of women and healthcare professionals.
Systematic Review
This year I have continued work on my systematic review. The protocol for this has now been registered on the Prospero database and is titled ‘Women’s experiences of screening and assessment of mental health problems in the perinatal period: a systematic review and meta-synthesis of the literature’. Linked here:
https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=338746
Next steps
The empirical studies are set to continue into Spring of 2023 and so recruitment, data collection and analysis will continue to be a priority into the next academic year. I will also be dedicating blocks of time to carrying out the systematic review. From a personal perspective, in terms of my academic development, I will be concentrating on my writing goals, ensuring work is adequately prepared for publication and seeking opportunities to present at/attend appropriate conferences. I continue to benefit from being part of the early career researcher’s network in suicide and self-harm, and all that this supportive, international group offers.
Progress Report Year 1, 2021
Beginning my PhD studies working fully remotely at a new university, developing new academic relationships and with all that living with lockdowns has entailed, has been a challenge. However, I received a warm welcome and my discovery of this important area of research, together with good academic and peer support has facilitated a positive start to my PhD journey
During the first few months, I spent time immersing myself in the literature around suicide research. Gaining a broad understanding of the many aspects of suicidology i.e. epidemiology, determinants, theoretical frameworks, interventions and of course insight into the phenomenology of suicidal experiences, was crucial to begin to understand how suicide research fits into this picture. I have created links with others working in the field in the form of an early career group for suicide and self-harm researchers. Attending virtual conferences and seminars has created opportunities to network and to learn more about the different ways that research is contributing to suicide prevention. I have also undertaken training in public engagement, good clinical practice, academic writing skills and systematic reviews.
Understanding the evidence
This PhD is focused on exploring suicide research from participant perspectives, asking how it can be conducted in ways that are ethical and appropriate to those asked to be involved. I decided it was important to first explore the evidence around the impact of participation. I conducted a literature review, examining the evidence for any effects of participation in different populations, settings and types of research. The review concluded that there is no evidence that participation in suicide research causes harm, furthermore, many people report personally benefitting from their involvement. A gap identified was that there is very little evidence regarding participants’ own views and experiences of taking part in research, particularly where suicide questionnaire measures have been used. This gap was to inform the research question for my first empirical study.
First empirical study/PPI
Much of my time in recent months has been spent planning my first study. Forming a Patient and Public Involvement (PPI) group has been integral to this. It is extremely important for this project that the studies are designed and conducted with input from experts by experience. We applied for and were successful in securing funding to provide payment to PPI group members and I have been fortunate to be able to share my ideas with people who have personal experience to draw upon and a great deal of enthusiasm for the work.
I will be investigating the appropriateness of using validated brief self-report suicide measures in a perinatal population. Suicide is a leading cause of maternal deaths in the UK and yet there is surprisingly little research exploring women’s experiences directly. I have designed a study in which I will collect qualitative data using a think aloud method, semi-structured interviews and qualitative surveys. I plan to recruit women with a history of suicidal experiences who are currently in the perinatal period, via NHS services. In a second work stream, I will interview midwives and health visitors to investigate their views about discussing suicide with women in their care. Preparation of the study protocol and all of the documents required to submit an ethics application is well underway and I hope to gain approval to begin the study in the autumn 2021.
Systematic review
I have begun planning and writing the protocol for a systematic review. This has included scoping the literature, refining a research question, defining key terms and devising a search strategy. The review will be a meta-synthesis of experiences of participation in suicide-focused research.
Next Steps
Once the ethics application for the first study is under review, I plan to continue with work on the systematic review and will pre-register the protocol for this in due course. I have begun formulating plans for my next empirical study in which I would like to address the use of ecological momentary assessment in suicide research and to examine participant experiences of this method.