Background: The use of participatory research approaches in the field of dementia and forensic mental health research has been on the rise. Advisory board structures, involving people with lived experience (PWLE), have frequently been used for guiding and leading research. Yet, there has been limited guidance on the establishment, retention and use of advisory boards in the field of dementia and forensic mental health research.
Objective: This project outlined in this research protocol will investigate the benefits and challenges of establishing three patient advisory boards, involving PWLE, practitioners and researchers with the purpose to guide research. Data will be used to develop guidelines for best practice in involving PWLE in dementia and forensic mental health research through advisory boards.
Methods: The research project will be divided into three phases: Phase I will involve two topic-specific systematic reviews on the use of participatory research with PWLE, followed by an initial study exploring PWLE's, practitioners' and researchers' expectations on research involvement. Phase II will consist of the establishment of three advisory boards, one focusing on dementia, one on forensic mental health and one overarching coordinating advisory board, which will involve PWLE from both fields. Phase III, will consist of interviews and focus groups with advisory board members, exploring any challenges and benefits of involving PWLE and practitioners in advisory boards for guiding research. To capture the impact of involving PWLE in different research phases and tasks, interviews and focus groups will be conducted at four different points of time (0, 6, 12, 18 months). Reflexive thematic analysis will be used for the analysis of data.
Discussion: The project aims to explore the involvement of PWLE and practitioners in guiding research and aims to develop guidelines for best practice in establishing and using patient advisory boards in dementia and forensic mental health research and involving PWLE and practitioners in research.
Keywords: Advisory boards; Dementia; Forensic mental health; Participatory research; Patient and public involvement (PPI); People with lived experience (PWLE); Secure hospitals.
There is an increasing involvement of people with mental health issues in research, especially in the form of advisory boards. So far People With Lived Experience [PWLE] of mental health issues acquired either from first person experience or through family members, and mental health practitioners’ involvement in research has been found to benefit research and society. This is because it increases reach and quality of research, whilst raising the voice of people commonly excluded from decision making (e.g. research, care provision). This research protocol describes the design of a three-year research project. The project aims to establish and use patient advisory boards, involving PWLE, practitioners and researchers, to guide research. The project will consist of three phases: (1) a review of previous studies on the use of participatory research with PWLE of dementia and forensic mental health care, followed by an initial study exploring PWLE’s, practitioners’ and researchers’ expectations in research involvement, (2) the establishment of three advisory boards, one focusing on dementia, one on forensic mental health and one overarching coordinating advisory board, and (3) an exploration of challenges, barriers and benefits of involving PWLE of dementia/forensic mental health care and practitioners in advisory boards for research through interviews and focus groups. Interviews with PWLE and practitioners involved in the advisory boards will be conducted at four different points of time (0, 6, 12, 18 month). At the end, we aim to develop guidelines for establishing advisory board structures, involving PWLE and practitioners in research.
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