Patient and Public Involvement and Engagement in a doctoral research project exploring self‐harm in older adults

Abstract

Background The contribution of involving patients and public in health research is widely reported, particularly within mental health research. Less is written about such contributions to doctoral research. The research focus of this doctoral research, self‐harm in older adults, was put forward by a Patient Public Involvement Engagement (PPIE) group, who contributed to its development. Aims Critically reflect on the process, potential impact and identify challenges and opportunities in involving robust PPIE in a doctoral study. Methods Three PPIE members contributed to a systematic review (SR) and a qualitative study through a series of four workshops to meet the aims of the study. PPIE contributed to developing the SR review questions, protocol, data analysis and dissemination of findings. For the qualitative study, they helped develop research questions, protocol, public‐facing documentation, recruitment strategies and data analysis. Involvement followed the GRIPP2‐SF reporting checklist. Results PPIE enhanced methodological rigour, data analysis, interpretation and dissemination of findings. Challenges included lack of ethical guidance, time‐related pressures and ensuring support for PPIE members. These were successfully managed through ongoing dialogue and regular communication. Conclusions PPIE can enhance the quality and depth of doctoral research, as lived experiences shared by PPIE members add to research's components. Exposing early‐career researchers to PPIE can build research cultures sensitive to PPIE's potential contribution and develop the expertise needed to avoid tokenistic involvement. Capturing lay perspectives is essential in mental health research to ensure research findings are accessible and that findings inform clinical practice. However, clear guidance on the ethical dimensions to PPIE is needed.

Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research

“…Disengagement in participatory research has been attributed in part to mismanagement of roles and a lack of clear, open communication [ 40 ]. Keeping consistent contact, such as meeting reminders and communication about assigned work, can improve output and engagement [ 41 ].…”

“…Commentators in participatory research have cautioned that inadequate time for involvement by peer researchers can render their participation superficial. Researchers advocate for thoughtful training with time built in for flexibility and delays [ 40 , 46 ]. The “publish or perish” mentality can compel academic researchers to leave insufficient time for the unfolding of participatory research processes, and this risks rendering the involvement of community members tokenistic [ 40 ].…”

“…Researchers advocate for thoughtful training with time built in for flexibility and delays [ 40 , 46 ]. The “publish or perish” mentality can compel academic researchers to leave insufficient time for the unfolding of participatory research processes, and this risks rendering the involvement of community members tokenistic [ 40 ]. The 2-year timeline of the Bipolar Youth Action Project provided the academic team adequate time to reflect upon and adjust and communicate expectations of Youth Action Group members and allowed the members to build capacity over time.…”

“…Within participatory research, failing to provide adequate compensation can lead to disengagement and disempowerment of peer researchers [ 40 ]. Compensation creates an environment of reciprocity, in which all participants feel valued [ 38 ].…”

“…In the application of community-based participatory research with seldom-heard populations of youth, as in the Bipolar Youth Action Project, a considered approach to ethics is necessary to ensure safety [ 47 ]. Most evident is the need to ensure that health professionals are available should distress occur, and to carefully convey sensitive information [ 40 , 47 ].…”