Participant, peer and PEEP: considerations and strategies for involving people who have used illicit substances as assistants and advisors in research

Greer, Alissa; Amlani, Ashraf; Pauly, Bernadette; Burmeister, Charlene; Buxton, Jane A.

doi:10.1186/s12889-018-5765-2

Cited by 36 publications

(71 citation statements)

References 28 publications

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“…The goal of "peer engagement" is to empower and utilize peoples’ lived and living experiences of substance use and their unique ability to connect with the community to promote the relevance, accessibility and equity in harm reduction initiatives [ 16 ]. PWLLE voices have been centered as a result of a long history of grassroots organizing and activism in the harm reduction community and beyond.…”

Section: Discussionmentioning

confidence: 99%

“…A growing body of North American literature demonstrates the positive impacts of engaging peer workers in policies, programs, the community, and work settings [ 15 ]. Peer work of all types provides employment and income for PWLLE who have historically been excluded from the labor market [ 11 , 16 ]. Studies show peer-based harm reduction services are preferred by PWLLE and increase the uptake of initiatives [ 17 , 18 ].…”

Section: Introductionmentioning

confidence: 99%

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Organizational support for frontline harm reduction and systems navigation work among workers with living and lived experience: qualitative findings from British Columbia, Canada

et al. 2021

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Background The inclusion of people with lived and living experience of substance use is essential to effective and client-centered harm reduction services and strategies. The aim of this study is to critically examine and characterize peer worker roles and the definition, recognition, and support for these roles within harm reduction organizations. Methods Fifteen interviews were conducted with peer workers—people with lived and living experience of substance use engaged in harm reduction service delivery—in British Columbia, Canada. An interpretive descriptive approach to data analysis was used to generate themes that best illustrated the roles of peer workers. Findings Two interrelated and overarching themes are presented: (1) peer work in practice; (2) organizational support. Our findings illustrate that peer work is incredibly complex and demanding, requiring peers to be at the forefront of support within their communities while simultaneously navigating the oppressive structures within which they work. While peer workers found a high degree of purpose and meaning in their day-to-day work, their roles lacked definition within organizations, which produced feelings of ineffectiveness and being undervalued. A lack of organizational understanding and recognition of their roles was evident from unclear "peer" role titles, a lack of role communication and expectations, the representation of experiential knowledge, and a lack of role support and training. Conclusions These findings may help harm reduction organizations understand peer work and worker roles which may inform and promote equity in future harm reduction initiatives that include people with living and lived experience of substance use.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Organizational support for frontline harm reduction and systems navigation work among workers with living and lived experience: qualitative findings from British Columbia, Canada

et al. 2021

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“…Enhancing the meaningful involvement of PWUD and their peer organizations in research and policy has been an ongoing endeavor for decades [1] with literature discussing good practice as well as barriers and enablers [8, 25, 39–42, 52]. However much of this literature has focused on engagement strategies and research methodology, with much less emphasis on identifying system level factors that may enhance or constrain meaningful involvement [6, 13].…”

Section: Discussionmentioning

confidence: 99%

Achieving meaningful participation of people who use drugs and their peer organizations in a strategic research partnership

Brown

Crawford²,

Perry

et al. 2019

Harm Reduct J

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Background Peer-led programs with people who use drugs (PWUD) have been a key characteristic of the harm reduction in many countries, including their involvement in research. However, peer involvement in research is often limited to recruitment, consultation, and reporting back, rather than a genuine collaboration in the priority setting, design, and conduct of research. PWUD peer organizations face ongoing challenges to demonstrate the depth of their knowledge of current and emerging issues within drug-using networks and the value of their peer insights for effective research and policy. The identification of benefits, barriers, and enablers for meaningful participation of PWUD in research has often been limited to methodological rather than system level factors. Methods This paper draws on the experiences and findings of the What Works and Why (W3) Project, a 5-year collaborative study with peer organizations. The study drew on systems thinking methods to develop a framework to demonstrate the role of peer organizations within their community and policy systems. The study required peer staff and researchers to undertake the simultaneous role of drivers, participants, and analysts in the research. To identify the learnings in relation to meaningful participation of PWUD peer organizations in research, we drew together the insights and experiences of peer staff and researchers across the 5 years of the study Results The W3 Project provided insights into the nuances of community-engaged research practice and the ongoing benefits, barriers, and enablers to the meaningful participation of PWUD and their peer organizations. These included system-level barriers and enablers beyond individual research projects or methodology. The capacity of research and peer organizations to maintain meaningful peer participation in research can be restricted or enhanced by the systems in which they are embedded. Conclusions Recognizing peer organizations as active participants and drivers within community and policy systems can help clarify their unique and critical role in research. Achieving meaningful collaboration with PWUD peer organizations requires looking beyond good practice methods to the system-level factors with attention to the system-level benefits, barriers, and enablers.

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“…Linked with these changes was a hope of social re-inclusion, a return to work, family and community life and commitment to give back to their community by sharing their experiences to help others. There is potential to utilise this social capital for HCV prevention and strategy level by engaging treated prisoners in peer support networks and as recovery ambassadors and coaches (a non-clinical person who supports others recovering from drug dependence)[51,52]. It is important that expectations are managed since many challenges will still remain.…”

Section: Discussionmentioning

confidence: 99%

Competing priorities and second chances - A qualitative exploration of prisoners’ journeys through the Hepatitis C continuum of care

et al. 2019

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High levels of undiagnosed and untreated HCV infection exist in prison populations globally. Prisons are a key location to identify, treat and prevent HCV infection among people who inject drugs (PWID). Understanding prisoners’ lived experiences of the HCV continuum of care informs how HCV care can be effectively delivered to this marginalised and high-risk population. This study aimed to explore Irish prisoners’ experience of prison and community-based HCV care. We conducted one-to-one interviews with 25 male prisoners with chronic HCV infection. Data collection and analysis was informed by grounded theory. The mean age of participants and first incarceration was 39.5 and 18.3 years respectively. The mean number of incarcerations was eight. The following themes were identified: medical and social factors influencing engagement (fear of treatment and lack of knowledge, HCV relevance and competing priorities), adverse impact of HCV on health and wellness, positive experience of prison life and health care and the transformative clinical and non-clinical changes associated with HCV treatment and cure. Findings suggest that prison release was associated with multiple stressors including homelessness and drug dependence which quickly eroded the health benefits gained during incarceration. The study generated a substantive theory of the need to increase the importance of HCV care among the routine competing priorities associated with the lives of PWID. HCV infected prisoners often lead complex lives and understanding their journeys through the HCV continuum can inform the development of meaningful HCV care pathways. Many challenges exist to optimising HCV treatment uptake in this group and incarceration is an opportunity to successfully engage HCV infected prisoners who underutilise and are underserved by community-based medical services. Support and linkage to care on release is essential to optimising HCV management.

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Participant, peer and PEEP: considerations and strategies for involving people who have used illicit substances as assistants and advisors in research

Cited by 36 publications

References 28 publications

Organizational support for frontline harm reduction and systems navigation work among workers with living and lived experience: qualitative findings from British Columbia, Canada

Organizational support for frontline harm reduction and systems navigation work among workers with living and lived experience: qualitative findings from British Columbia, Canada

Achieving meaningful participation of people who use drugs and their peer organizations in a strategic research partnership

Competing priorities and second chances - A qualitative exploration of prisoners’ journeys through the Hepatitis C continuum of care

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