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Evaluating the impact of patient and carer involvement in suicide and self-harm research

Article in review: Littlewood, D., Quinlivan, L., Steeg, S., Bennett, C., Bickley, H., Rodway, C., Webb R. & Kapur, N. (2019). Evaluating the impact of patient and carer involvement in suicide and self-harm research: A mixed-methods, longitudinal study protocol. Health Expectations, DOI: 10.1111/hex.13000


Patient and Public Involvement (PPI) is becoming more and more common across health and particularly in mental health-related research. However, there is little specific research about PPI in self-harm and suicide research. This study seeks to collect data over two years to enable the evaluation of PPE through a complete research cycle. The overall intent of the study is to inform best practices in involving those with lived experience of self-harm and suicidal behaviours within research in this field.

The argument for Patient and Public Involvement
Effective PPI is understood to be of clear benefit, yet reporting about PPI in the literature remains inconsistent. There is good reason for involving people with lived experience of suicidality in research, recognising that people can be leaders or partners in research which may impact them. Opportunity for PPI should then be offered, irrespective of whether this involvement positively impacts the research. This is especially true for suicide research. While we know that research often involves people with lived experience, there is a shortage of targeted research within this highly specialised field.

Existing research
Two 2018 studies are believed to be the only research to date seeking to evaluate PPI in suicide research, proving useful insight and tips for researchers seeking to involve people with lived experience in the research process.
• In Improving the quality of prison research: a qualitative study of ex-offender service user involvement in prison suicide prevention research by Awenat and colleagues, they identified that ex-prisoners involved in PPI described their participation and involvement in the research process as having benefits for their self-perceptions. They also found that positive relationships between researchers and participants were vital to the engagement of the ex-prisoners in the research.
• MacLean and colleagues investigated how PPI practices were tailored to meet the need of the participants in a research program. Men attending hospitals after self-harm were supported with flexible processes for research participation.

Considerations for PPI in suicide research
While the benefit of PPI is clear, there are unique challenges for PPI in the field of suicide research. Central to ethical research must always be a commitment to do no harm and consideration must be made regarding how safe involvement can occur. It is possible that involving people with personal experiences of self-harm and suicide made proved to be distressing or upsetting for research participants. It is critical to maintaining an adequate level of monitoring and support for individuals involved in such research.

Findings have suggested that participating in suicide-related research is not generally associated with increased levels of distress or suicidal thought; however, minimising risk should be a key component of a PPI plan for studies. There is no known research about how to best support the emotional needs of PPI participants in suicide and self-harm research.

Aim and benefits of this study
This longitudinal and mixed-method study, to be undertaken over two years, has three key aims:
• Understand how PPI in suicide research will impact the research itself as well as participants and researchers
• Improve understanding of what constitutes quality, effective and meaningful involvement in sensitive research on these topics
• Explore participant and researcher’s views about optimal and appropriate support during the research process

Data collection will involve members of a PPI panel and other researchers. Data to be assessed and analysed will include:

• Panel member baseline questionnaire
• Panel member repeated questionnaire
• Researcher experience questionnaire
• Document review
• Semi-structured interviews

A key strength of the study is the mixed methods and longitudinal model, to incorporate both qualitative and quantitative components, which will enhance data trustworthiness.

With a need for discipline-specific knowledge, this planned study seeks to address gaps in our knowledge around PPI in suicide and self-harm research. Insights gained through this longitudinal study will inform and develop guidance for researchers in the field who recognise the value of experiential knowledge and want to include PPI in their research.

We will keep you posted on the outcomes once Littlewood and colleagues complete their studies!

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