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Thursday, 14 September 2017

Incorporating a public's perspective into research: a research project on self-harm in older adults

Written by Isabela Troya | | @PCSciences | Published 15/09/2017

As an international PhD student studying in the UK, I am committed to developing research links between the UK and my home country, Ecuador. In particular, investigating the opportunities to translate my research into an Ecuadorian context. I was recently given the opportunity to travel back to Ecuador with the Santander travel bursary, where I was able to explore the transferability of my research around mental health and using patient and public involvement.

There are two core/influential elements that form part of my research: first, research that is meaningful in the real world, and the key to this is that it is informed by Patient and Public Involvement and Engagement (PPIE); and the second, increasing the understanding of mental health problems through research, specifically in vulnerable and under-served populations.

My PhD  will add to the understanding of self-harm in older adults. I am conducting a review of the published evidence and also interviewing older adults who self-harm or have done so in the past, as well as those working with this population, such as third sector (voluntary or chairity sector) workers.

The importance of self-harm research cannot be overstated: self-harm is a major risk factor for suicide and every 40 seconds a life lost due to suicide worldwide. The International Association for Suicide Prevention has designated 10th September as World Suicide Prevention Day. This day is not only meant for remembering the lives of those that have been lost because of suicide, but mostly it is about suicide awareness and prevention, through adequate support and early recognition.

In 2013 the theme for World Suicide Prevention Day was stigma as one of the main barriers to suicide prevention. This is true across all populations, but even more accentuated in those where suicide is even more stigmatized such as ethnic minorities and older adults. Being one of the age groups with highest suicide rates, older adults are particularly vulnerable towards suicidal behaviour and self-harm, because of varying factors such as physical illness, social isolation, bereavement and loss, mental illness. However, not all self-harm behaviour in older adults is due to suicidal intentions or wish to end one's life.

Research in self-harm has shown the complexity behind self-harm behaviour and there not being one single contributing factor or motivation behind the act. This has been explored through published qualitative research which has attempted to understand self-harm in other populations such as adolescents, those with a specific condition such as Borderline Personality Disorder, or imprisoned adults, and which has helped to increase the understanding and service provision given to these populations. Still to be explored are the perspectives of self-harm in older adults: a PPIE group identified the need of exploring self-harm in older adults three years ago, which led to the Keele Univeristy ACORN funding of my PhD.

During my visit to Ecuador, made possible by a successful application for the Santander travel bursary, I was invited to at the Quito Brain and Behaviour Lab based at University San Francisco de Quito, my former university. Here, I presented an outline of my doctoral thesis with a particular emphasis on PPIE, to staff and students. I was received with an attentive, open and curious audience, where challenging questions were posed, which resulted in me expanding of views and broader conceptualisation of my research project.

Additionally, since there are Ecuadorian public policies and laws that support the involvement of the public in health research, I explored the ongoing research at the Quito Brain and Behaviour Lab, in order to see whether PPIE would be opportune within the context. Doing so allowed me to learn how context specific and resource dependent health research can be. Specifically within Ecuador and the Quito Brain and Behaviour Lab, despite there existing supporting policies from the state in order to incorporate PPIE in health research, this is something which is not a priority, as other fundamental structures are needed prior adding any other elements to research such as PPIE. Additionally, adequate structure, leadership, and support from authorities as well as research staff is needed in order to evaluate whether PPIE would be opportune and/or successful in the South American country. But for this, a strong research culture needs to exist, something which is still in its early stages from what I gathered from my trip to Ecuador.

The reception and openess to involving the public in research from staff and students conducting research must not be understated as well, as this is crucial within any research context that wishes to incorporate PPIE. This is something that cannot be forced upon with national policies, but an educational shift that needs to be incorporated amongst research staff early on so acceptance and reception towards PPIE can be succesful.

After my visit to Ecuador, I returned with a further understanding of what core elements are needed in order to even start thinking of incorporating the public’s perspective in research. So instead, I came back learning what structure and support is needed in order to successfully incorporate PPIE in research.

As a PhD student with PPIE very present in my study this is very valuable, as PPIE has received much criticism due to claims of superficial involvement and the limited impact the public still has in health research. Being able to partially understand what is needed before incorporating PPIE, and identifying some of the key elements to avoid falling into superficial involvement have been some of the valuable lessons I take back after my visit to Ecuador, as well as an added perspective to my research project.

Acknowledgment: Funding provided by Keele University and Santander Bank.

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