Involvement throughout a PhD project exploring self-harm in older adults
7 February 2020
Throughout her 3-year PhD study, ‘Understanding self-harm in older adults’, Dr Isabela Troya included meaningful and collaborative Patient and Public Involvement and Engagement (PPIE). The PhD derived from an idea by public contributors supporting previous work exploring self-harm in primary care (see Carr et al., 2016) and involved qualitative methods, in-depth semi-structured interviews (Troya et al., 2019a, 2019b), as well as the conduct of a systematic review (Troya et al., 2019c). The research was conducted at the School of Primary, Community and Social Care at Keele University under the supervision of Prof Carolyn Chew-Graham, Prof Lisa Dikomitis, and Dr Opeyemi Babatunde.
A total of six meetings were held with PPIE members throughout the 3 years, as well as quarterly email communication. PPIE members were older adults with lived experience of self-harm, caregivers and support workers. As highlighted in Figure 1, PPIE involvement started at the beginning of the research cycle and continued throughout.
During the first PPIE meeting, the group was consolidated and a discussion was held with regards to what a systematic review is and what definition of self-harm should be used. For this, the INVOLVE document Public Involvement in Systematic Reviews was used for guidance. PPIE members deliberated on the eligibility criteria for the review. The proposed qualitative study was presented to members for feedback: an outline of the proposed data collection methods, as well as draft public‐facing documentation were presented. This first meeting was held prior to submitting the study proposal for ethical review.
In the next meetings, involvement continued into the development of the review protocol, data analysis and dissemination of findings. With regards to analysis and dissemination of findings from the review, the group contributed to developing the diagrammatic representation of the relationship between the various risk factors for self-harm among older people (see Figure 2). Furthermore, findings based on lived experiences and current literature were discussed to reach consensus during PPIE meetings. These discussions were then considered when interpreting results from the review.
For the qualitative study, PPIE helped develop the protocol, public‐facing documentation, recruitment strategies, data analysis and dissemination of findings. An example of this involvement in the qualitative study was that recruitment strategies were expanded following suggestions from the PPIE group. The additional proposed venues to recruit participants were older adults support groups and women support groups.
PPIE was included throughout the entire research cycle, from the identification and development of the research question to the dissemination of findings. As an example of how PPIE was involved in dissemination, PPIE members helped create an information leaflet summarising results from the systematic review which helped share findings with members of the wider public.
Furthermore, as a final dissemination activity, and thanks to the awarded NIHR SPCR PPIE award: SPCR-2014-10043, Grant No. 450, an animated video summarising results from the PhD was produced. During a first meeting, the draft script was reviewed between PPIE members and members of the research team in order to agree on a final message and script. In the next meeting with PPIE members, the video production company joined the meeting in order to go through potential animation options for the video characters, and choose the voice demos used for the video.
This video was premiered at a leading national suicide conference: National Suicide Prevention Alliance 2020 Conference held January 2020. Dr Isabela Troya co-led with Prof Chew-Graham a workshop titled ‘Involving those with lived experience’ where she shared with the audience the involvement of patients and the public across her PhD, and finalised the workshop by showing the video to members of the audience. Clinicians, researchers, members of the public, and policy makers were part of the audience. Much interest was received from the audience, and several charities and independent researchers got in touch in order to gain permission to share the video across their networks. Furthermore, the resource has been shared via social media and online by partners that include the RCGP Mental Health Toolkit. The video will help improve awareness of self-harm in older adults in lay and healthcare professional audiences.
Given the sensitive nature of the research topic, to ensure PPIE members’ safety and wellbeing, several steps were taken. Support (logistical, training and wellbeing) was provided by the Keele Research User Group, one of ten test-bed sites for INVOLVE. Logistical support included ensuring meeting venues were accessible to members, as well as coordinating meetings at a date and time convenient for members. Training support entailed lay-friendly and accessible materials. Support for wellbeing included enabling members to feel they could speak freely within workshops and ask questions of any kind and careful observation of members’ emotional and physical needs.
Lastly, as part of the process of PPIE in the PhD, critical reflection on the research process, challenges encountered in involving PPIE and its impact on the PhD was undertaken. To document the involvement, the reporting checklist GRIPP2‐SF (Guidance for Reporting Involvement of Patients and the Public‐Short Format) was followed. This was published in Health Expectations: ‘Patient and Public Involvement and Engagement in a doctoral research project exploring self-harm in older adults’- see Troya et al., 2019d.
Meaningful PPIE can be achieved through careful consideration of PPIE members’ and researchers’ priorities and needs. When conducted with adequate support and guidance, PPIE can offer researchers, patients and the public continuity in the research process.
Carr, M. J., Ashcroft, D. M., Kontopantelis, E., Awenat, Y., Cooper, J., Chew-Graham, C., ... & Webb, R. T. (2016). The epidemiology of self-harm in a UK-wide primary care patient cohort, 2001–2013. BMC psychiatry, 16(1), 53.
Troya, M. I., Chew-Graham, C. A., Babatunde, O., Bartlam, B., Mughal, F., & Dikomitis, L. (2019a). Role of primary care in supporting older adults who self-harm: a qualitative study in England. British journal of general practice, 69(688), e740-e751.
Troya, M. I., Dikomitis, L., Babatunde, O. O., Bartlam, B., & Chew-Graham, C. A. (2019b). Understanding self-harm in older adults: A qualitative study. EClinicalMedicine.
Troya, M. I., Babatunde, O., Polidano, K., Bartlam, B., McCloskey, E., Dikomitis, L., & Chew-Graham, C. A. (2019c). Self-harm in older adults: systematic review. The British Journal of Psychiatry, 214(4), 186-200.
Troya, M. I., Chew‐Graham, C. A., Babatunde, O., Bartlam, B., Higginbottom, A., & Dikomitis, L. (2019d). Patient and Public Involvement and Engagement in a doctoral research project exploring self‐harm in older adults. Health expectations: an international journal of public participation in health care and health policy, 22(4), 617.