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

Abstract

Background We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership—carried out by a team composed of academic, community, and youth partners—was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder. Objective The aim is to describe the opportunities and challenges of this collaboration and to reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned. Methods The project was conducted in multiple phases over 2 years: (1) grant-writing, with youth contributing to the process; (2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; (3) the first research forum, where more youth were consulted about the strategies they apply to stay well (self-management strategies); (4) data analysis of Forum I findings; (5) research Forum II, which consulted youth with bipolar disorder about knowledge translation of Forum I findings; and (6) data analysis of Forum II findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process. Results Of the initial 12 youth peer researchers, 7 remained on the project from the recruitment phase until the project ended. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management strategies. Conclusions This article shares what was learned from the process of partnering with youth with bipolar disorder in a community-based participatory research study.

Participatory Action Research Among People With Serious Mental Illness: A Scoping Review

“…The prevalent description of PSMI as patients or passive objects of study causes them to feel uncomfortable in their roles and widens the gap between them and the research team (Rempfer & Knott, 2002). To achieve PAR’s emancipatory agenda, it is crucial to bridge this gap by creating opportunities for PSMI to acquire knowledge and build the capacity to shape research priorities from a position of agency (Lapadat et al, 2020).…”

“…They stressed the need to involve PSMI from the outset of the project so that they have maximum influence and involvement. PAR researchers have cautioned that “inadequate time for involvement by peer researchers can render their participation superficial” (Lapadat et al, 2020, p. 7) and recommended that researchers include time for flexibility and delays in the research process (Lincoln et al, 2015).…”

“…Activity and participation areas: 29 Self-care 12 P1 (Gorczynski et al, 2013); P2 (Michalak et al, 2019); P3 (Sims-Gould et al, 2017); P4 (Lapadat et al, 2020); P5 (Kahn et al, 2012); P6 (Weinstein et al, 2019); P7 (Morton et al, 2022); P8 (Stanhope & Henwood, 2014); P9 (Michalak et al, 2016); P10 (Weinstein, 2018); P11 (Sayer et al, 2019); P12 (Sameby et al, 2008) Employment and leisure 6 P13 (Rebeiro, 2012); P14 (Rebeiro Gruhl et al, 2012); P15 (Gruhl et al, 2012); P16 (Sundar & Ochocka, 2004); P17 (Stone et al, 2018); P18 (Johnson et al, 2016) Social participation 11 P19 (Dulek et al, 2021); P20 (Skoy & Werremeyer, 2019); P21 (Suto et al, 2021); P22 (Rowe et al, 2012); P23 (Quintas & Burnett, 2013); P24 (Barrow et al, 2014); P25 (Terp et al, 2016); P26 (Onken, 2018); P27 (Millner et al, 2019); P28 (Agner et al, 2020) (Robertson et al, 2020); P72 (Raymaker et al, 2020); P73 (Stoffel, 2007); P74 (Ochocka et al, 2005); P75 ; P76 (Cabassa et al, 2013); P77 (Mizock et al, 2014); P78 (Mizock et al, 2015); P79 (Solomon et al, 2016); P80 (Thompson, 2015); P81 (Rouse et al, 2017); P82…”

“I find this really entertaining” – first look of the relationship between vocational school students and various media

“…Workshops have been shown to be a useful teaching method to engage with young people and for acquiring their points of view directly from them (Merila ¨inen, 2021; Merila ¨inen and Piispa, 2020). Echoing the findings of Lapadat et al (2020), when young people are given clear tasks but also the option of being active and creative in an engaging context, workshops are a useful method, but they do call for careful planning. When workshops are designed, multiple factors must be addressed.…”

“…Moreover, in dealing with young people and designing workshops, it is important to address ethical issues such as disabilities, differences in language skills, and differences in accessing information, and to consider their time constraints. As Lapadat et al (2020) say, research that involves young people may involve additional time, communication, support and attentiveness to the power differentials. Further, the youths' motivations in participating in the workshops may differ from those of the adults and academic researchers, and it is important to acknowledge both groups' priorities.…”