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Meaningful engagement of people living with HIV who use drugs: methodology for the design of a Peer Research… Closson, K.; McNeil, R.; McDougall, P.; Fernando, S.; Collins, A. B; Baltzer Turje, R.; Howard, T.; Parashar, S. Oct 7, 2016

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METHODOLOGY Open AccessMeaningful engagement of people livingwith HIV who use drugs: methodology forthe design of a Peer Research Associate(PRA) hiring modelK. Closson1,2, R. McNeil1, P. McDougall3, S. Fernando1, A. B. Collins1,2, R. Baltzer Turje3, T. Howard4and S. Parashar1,2*AbstractBackground: Community-based HIV, harm reduction, and addiction research increasingly involve members ofaffected communities as Peer Research Associates (PRAs)—individuals with common experiences to the participantpopulation (e.g. people who use drugs, people living with HIV [PLHIV]). However, there is a paucity of literaturedetailing the operationalization of PRA hiring and thus limited understanding regarding how affected communitiescan be meaningfully involved through low-barrier engagement in paid positions within community-basedparticipatory research (CBPR) projects. We aim to address this gap by describing a low-threshold PRA hiring process.Results: In 2012, the BC Centre for Excellence in HIV/AIDS and the Dr. Peter AIDS Foundation collaborated todevelop a mixed-method CBPR project evaluating the effectiveness of the Dr. Peter Centre (DPC)—an integrativeHIV care facility in Vancouver, Canada. A primary objective of the study was to assess the impact of DPC servicesamong clients who have a history of illicit drug use. In keeping with CBPR principles, affected populations,community-based organizations, and key stakeholders guided the development and dissemination of a low-barrierPRA hiring process to meaningfully engage affected communities (e.g. PLHIV who have a history of illicit drug use)in all aspects of the research project.The hiring model was implemented in a number of stages, including (1) the establishment of a hiring team; (2) thedevelopment and dissemination of the job posting; (3) interviewing applicants; and (4) the selection of participants.The hiring model presented in this paper demonstrates the benefits of hiring vulnerable PLHIV who use drugs asPRAs in community-based research.Conclusions: The provision of low-barrier access to meaningful research employment described herein attempts toengage affected communities beyond tokenistic involvement in research. Our hiring model was successful atengaging five PRAs over a 2-year period and fostered opportunities for future paid employment or volunteeropportunities through ongoing collaboration between PRAs and a diverse range of stakeholders working in HIV/AIDS and addictions. Additionally, this model has the potential to be used across a range of studies andcommunity-based settings interested in meaningfully engaging communities in all stages of the research process.Keywords: Community-based participatory research, Employment, HIV/AIDS, Harm reduction, Drug users* Correspondence: sparasha@sfu.ca1Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada2BC Centre for Excellence in HID/AIDS, St. Paul’s Hospital, 608-1081 BurrardStreet, Vancouver, BC V6Z 1Y6, CanadaFull list of author information is available at the end of the article© 2016 The Author(s). Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Closson et al. Harm Reduction Journal  (2016) 13:26 DOI 10.1186/s12954-016-0116-zBackgroundSince the outset of the HIV epidemic, people who usedrugs (PWUD) have advocated for more meaningful andegalitarian participation in the processes affecting theirlives [1]. This has been done in order to ensure that pol-itical and research agendas are relevant, actionable, andgenuinely improve the health and well-being of PWUDwho are living with, or at risk of, HIV. The ‘nothingabout us without us’ approach, which demands the in-volvement of PWUD in all aspects of HIV policy andprogram development, has been formally recognized asbest practice by national and international agencies,including the International HIV/AIDS Alliance, OpenSociety Institute, and Canadian HIV/AIDS Legal Network[2, 3]. Similarly, the urgency to work in partnership withpeople living with HIV (PLHIV) coalesced into a move-ment recognizing the need for greater and meaningful in-volvement of PLHIV (GIPA/MIPA) in the global responseto the HIV epidemic [1].The GIPA/MIPA and ‘nothing about us without us’movements have coincided with, and contributed to, theemergence of community-based participatory research(CBPR) [2]. Within the broader goals of strengtheningcommunity capacity and improving quality of life, CBPRaims to generate knowledge about health priorities byempowering and placing affected communities, as wellas the community-based organizations (CBOs) thatserve them, at the centre of research [4–6]. Increasingly,networks and coalitions of PLHIV, PWUD, CBOs, andinternational organizations are demanding improvedefforts to include affected populations in all stages of theresearch process, from research grant development toknowledge translation [7, 8].In response to these appeals, community-based HIVand harm reduction research has increasingly involvedmembers of affected communities as Peer Research Assis-tants or Associates (PRAs)—members of the affectedcommunity with common experiences to the participantpopulation (e.g. experience of homelessness, drug use)who are trained in research activities [9–14]. The involve-ment of PRAs within CBPR seeks to address existing andhistorical power imbalances between researchers and par-ticipants [15–17]. PRAs often facilitate data collectionwith the expectation that shared lived experience will in-crease the disclosure and validity of participants’ self-reported information [18]. Additionally, involving PRAshas been shown to improve community trust, increasingthe recruitment of harder-to-reach populations, such asPWUD, while simultaneously providing peer-support op-portunities for both PRAs and study participants [6, 16,17]. Given that PLHIV are disproportionately impacted bysocial-structural inequities such as homelessness andpoverty [19, 20], paid positions are instrumental in ensur-ing their meaningful participation in research. Recentlyrecognized as a successful form of harm reduction forPWUD, meaningful employment can also be a structuralintervention for this population linked to wider improve-ments in health and social outcomes [21, 22].While numerous studies focusing on HIV and harmreduction have been undertaken using a CBPR ap-proach [5, 6, 9, 14, 16, 23], there is a paucity of litera-ture detailing the operationalization of PRA hiring. Assuch, there remain substantial logistical, ethical, andmethodological gaps and challenges for researcherswho wish to involve PRAs in research [9]. We addressthese gaps by describing the PRA hiring process for theDr. Peter Centre (DPC) study.MethodsDevelopment of CBPR partnershipThe DPC is an integrative care facility for PLHIV that pro-vides comprehensive HIV and ancillary services, includingaccess to harm reduction services (e.g. supervised injec-tion room, injecting equipment), meal programming,medical care, counselling, and recreation programming[24]. In 2012, the BC Centre for Excellence in HIV/AIDS(BCCfE) and DPC partnered to conduct a mixed-methodevaluation of the effectiveness of the DPC’s integrativemodel of care provided to priority populations of PLHIVin Vancouver [25]. The study objectives specifically exam-ined the impact of the DPC on the health outcomes andquality of life of PLHIV who have a history of illicit druguse. Grounded in a CBPR framework, all aspects of thestudy design, including development of study instrumentsand data analysis, were conducted in collaboration withthe BCCfE, DPC staff, key community stakeholders, andpeers (i.e. people living with HIV, including clients of theDr. Peter Centre). As part of the development of the DPCstudy, focus groups were held in order to inform the re-search team of DPC client priorities. Throughout thefocus groups, participants stressed the importance of the‘nothing about us without us’ principles, emphasizing theneed for increased meaningful involvement in researchand highlighting gaps in opportunities for paid positionswithin research.Subsequent to the focus group discussions, a Com-munity Advisory Committee (CAC) comprised of DPCclients and other community stakeholders (e.g. funders,policymakers) was developed to guide the investigativeteam to ensure the study was grounded in the prioritiesof the community. Furthermore, to address community-identified gaps in paid employment opportunities withinresearch, the CAC and investigative team developedand implemented a hiring process that aimed to engagekey populations of PLHIV, including those who previ-ously or currently use illicit drugs, as PRAs within theDPC study.Closson et al. Harm Reduction Journal  (2016) 13:26 Page 2 of 7ResultsPRA hiring modelFor the purposes of the DPC study, PRAs were definedas PLHIV who had experiences and identities in com-mon with the study participants (e.g. histories of mentalhealth challenges, homelessness, illicit drug use), and in-cluded non-DPC clients. The CAC and investigativecommittee collaboratively decided upon this definitionin consultation with other CBPR studies with the aim ofhiring PRAs whose lived experience reflected the experi-ences of prospective study participants.While PRA hiring is typically conducted solely bythe research institution, our approach involved mem-bers of the DPC staff taking responsibility for hiringand supervising the PRAs in coordination with theinvestigative team. The hiring process adhered to theexisting organizational hiring policies and proceduresof the Dr. Peter AIDS Foundation (DPAF), the non-profit organization that raises funds to operate theDPC. In addition, the hiring team consulted job post-ings from other relevant research projects and a work-ing paper outlining potential recruitment and selectionapproaches when hiring PRAs [26–28]. We aimed todevelop and implement a low-barrier hiring process,ensuring the equitable representation and engagementof communities of PLHIV who use illicit drugs thathave been previously excluded from paid positionswithin research initiatives [29].Establishment and composition of the hiring teamThe hiring team, comprised of three sub-groups with differ-ent functions, was established to execute the hiring processas follows: (i) the hiring committee guided the overall hiringprocess and included a Human Resources representativeand the PRA supervisor from the DPAF, as well as the re-search coordinator, a PRA mentor with significant experi-ence in CBPR, and DPC clients from the CAC; (ii) ascreening team screened the applications and includedmembers of the hiring committee as well as a representa-tive from a local AIDS service organization (ASO) who wason the CAC; (iii) and finally, interview teams conducted theinterviews (see Fig. 1). All members of the CAC were in-vited to join the hiring team; however, to maximize inclu-sivity, CAC members who were interested in applying forthe position were asked not to join. Ultimately, only oneCAC member declined to join the hiring team due to anintention to apply for the position. Other CAC membersdeclined to join the hiring team due to other time commit-ments. Engaging with a variety of stakeholders on the hiringteam introduced different perspectives and ensured com-munity involvement in the process.Development and dissemination of the job postingA detailed description of the PRA hiring schedule is out-lined in Fig. 2 and began with the development of a one-page plain language job description and application form,written at a grade 8 reading level to ensure accessibility inFig. 1 Peer Research Associate hiring organization chartClosson et al. Harm Reduction Journal  (2016) 13:26 Page 3 of 7the recruitment process (see Additional file 1). The jobdescription outlined the roles and responsibilities of theposition and listed specific competencies (e.g. able to workas part of a diverse team, basic verbal communicationskills). The application form consisted of a single question:‘Please tell us why you are interested in working as a PRAon this project. Feel free to list your interests or any previ-ous research related experience. You can also submit aresume, but this is not required.’ This question wasdesigned to place value on prospective applicants’ widerange of previous work and volunteer experiences,prioritize the lived experiences of the DPC clientele, andin line with international guidelines for the meaningfulemployment of PWUD, offer an opportunity to those withlimited or no formal experience to apply on the basis oftheir interest in the position [3].Two PRA positions were advertised as 12-month termpositions, with the intent of providing opportunities tomore than two people over the course of the 3-yearproject. The job was posted at the DPC and dissemi-nated through community networks and allied organiza-tions (e.g. ASOs, drug user-led organizations).An information session was hosted by the studyresearch coordinator, PRA mentor, and PRA supervisorto answer prospective applicants’ questions regardingthe PRA position. The location and time of the infor-mation session were listed in the job posting, and 25 in-dividuals attended. The information session describedthe study’s community-based approach and objectives,as well as PRA job duties and responsibilities. This wasfollowed by a 30-min question and answer session.Questions from attendees included compensation de-tails, whether abstaining from particular drugs was re-quired to be eligible, and logistical questions (e.g. startdate, hours of work). Attendees were assured that drugabstinence was not a requirement for the position andwere informed that they would not be asked aboutcurrent drug use.Interviewing applicantsIn 2013, the DPC received 49 applications to fill the twoPRA positions. The screening team reviewed the initialapplications using criteria that referred to competenciesdefined in the job description (see Additional file 1). Fromthe 49 applications, 21 applicants met core competencies(i.e. showed evidence in their application of having workedas part of a diverse team, or previous experience complet-ing similar tasks as described in the posting) and werethus selected for a round 1 interview. Interview questionswere developed with the input of the hiring committeeand the study’s investigative team, and refined by theDPAF Human Resources representative. This collaborativeprocess was necessary to ensure that all questions were inaccordance with DPAF Human Resources policies, proce-dures, and employment standards.The DPAF Human Resources representative, PRAsupervisor, and the study coordinator interviewed 20 ap-plicants (one candidate withdrew), with each interviewlasting 15 min. Applicants were asked to describe them-selves and previous experiences that made them a goodfit for the position, as well as discuss a time when theywere part of a team or diverse group working towards acommon goal. The round 1 interview team used the ap-plication screening criteria to evaluate candidates duringthese interviews. The purpose of the round 1 interviewwas to narrow down the list of candidates using thesame criteria as was used in the application screeningprocess. At every stage of the 2013 and 2014 hiringprocesses, candidates were selected for the next stage ac-cording to specific criteria that reflected the competen-cies listed in the job description (see Additional file 1).In 2013, 11 candidates were selected for a secondinterview.The second round interviews were conducted by aDPAF Human Resources representative, the PRA super-visor, the study coordinator, and a DPC client represen-tative from the CAC. Interviews lasted approximatelyFig. 2 Peer Research Associate hiring scheduleClosson et al. Harm Reduction Journal  (2016) 13:26 Page 4 of 745 min, and all clients were assessed using an interviewguide (see Additional file 2). To measure the performanceof each candidate during the first and second round inter-views, each candidate was scored following a letter gradeschema: A+, A, A−, B+, B, B−, C+, C, C−, D. At the endof all the interviews, the letter grades were translated intoa number in order to develop a means to compare thecandidates: D = 1, C− = 2, C = 3 […] A+ = 10. A candidate’sscore for each category was summed up into a total score.Candidates were ranked according to their total score, andthe selection for the round 2 interview and selection forthe position were based on those scores. In the first round,certain criteria could not be ascertained through the 15-min interview (reading skills, and basic computer skills).These criteria were designated as ‘not applicable.’ As anasset qualification, candidates were not penalized if theydid not have previous research experience (i.e. any men-tion of previous research experience was noted but notgraded, thus this criterion did not impact the candidate’sscore). Following the second round of interviews in 2013,two candidates were selected (see Fig. 2).In 2014, The DPC received 17 applications for twoPRA positions. The decreased number of applicants inthe second year is thought to be due to concurrentCBPR projects in the community, which resulted in thecreation of alternative opportunities to which peoplecould apply. Additionally, interacting with PRAs duringand outside the survey administration process helpedprospective applicants better understand the job require-ments, which may have influenced recruitment. Tencandidates were selected for an interview. Due to thesmaller numbers, it was deemed unnecessary to hold asecond round of interviews.Candidates who were not selected were contacted andinformed at each stage in the hiring process. This uniqueaddition to the existing DPAF hiring process wasdeemed necessary by the hiring committee to respect-fully thank applicants for applying, rather than simplynot informing unsuccessful candidates, as can be thenorm in some hiring processes. This hiring process waspiloted during the first year of the study and revised topromote continuous improvement in the second year ofthe study. In total, five PRAs were hired over a span of2 years.DiscussionThis PRA hiring process demonstrates how community-based organizations and researchers can operationalize‘nothing about us without us’ and GIPA principles in thecontext of a CBPR partnership to promote the involve-ment of affected populations in research, includingpeople who use illicit drugs. By harnessing differentstrengths of key community stakeholders and affectedpopulations, this process sought to create a consistent,low-barrier, and equitable recruitment and hiring process.Five PRAs were successfully hired as DPC employees overa 2-year period using the process outlined above to assistin the planning and execution of the DPC study. Add-itionally, this hiring process contributed to a unique andinnovative employment opportunity and data collectionstrategy that should be considered within future CBPRprojects.Receiving 49 and 17 applications during the first andsecond years of the DPC study, respectively, suggests astrong interest in peer-based vocational opportunitiesamong the affected community. Importantly, the affectedcommunity for this study—PLHIV with histories of illicitdrug use, mental illness, and unstable housing—facesmultiple social-structural barriers to engaging in formalemployment, particularly those who have been out ofthe workforce for long periods of time [30]. The 12-month position aimed to allow for numerous opportun-ities for affected community members to become involvedin community-based research projects. Additionally, theposition provided an opportunity for interested applicantsto re-apply in subsequent years if they were not recruitedinitially.The hiring of PRAs within our study provides a poten-tial avenue to address structural inequities to equal em-ployment opportunities for PLHIV with a history of illicitdrug use in a Canadian context. PRAs gained research-based skills over their contracted time, which were trans-ferable into more permanent semi-professional positions(e.g. peer mentor, peer navigator) following the end oftheir term. This is significant as high levels of workplacestigma and discrimination create numerous barriers forPLHIV and PWUD wishing to enter into the workplaceand maintain formal employment [31–33]. This lack ofopportunities often results in increased engagement in in-formal, street-based income generation (e.g. selling drugs,street-based sex work), which has been associated withheightened experiences of violence [30] and a decreasedlikelihood of achieving drug cessation [28]. Low-barrierformal employment opportunities have previously beenassociated with improved ART adherence and life expect-ancy for high-risk affected populations of PLHIV [33, 34].Thus, our hiring process aimed to provide an avenue foraddressing the deleterious effects of employment dispar-ities for marginalized populations including PLHIV andPWUD [3].The development and dissemination of this hiringmodel adds to the literature on best practices foremploying PWUD and has a number of implications forfuture CBPR initiatives [3]. Traditionally, there has beena lack of monetary compensation for PRAs’ participationwithin research projects [3, 23, 28]. In line with ‘nothingabout us without us’ principles, we acknowledge thatPWUD and PLHIV provide invaluable lived expertise toClosson et al. Harm Reduction Journal  (2016) 13:26 Page 5 of 7the research process and thus should be equally andequitability compensated for their contributions. Thishiring process was largely delegated to the CBOs inorder to overcome gaps in methods used to includePRAs in the research process. From the development ofthe job description to the selection of successful appli-cants, the DPC was at the forefront of the process, andDPC clients were meaningfully involved. Ensuring thatDPC clients were represented throughout the hiringprocess demonstrated that the perspectives of PLHIVwere strongly valued. In this regard, championing GIPAprinciples within hiring processes helps to address con-cerns around tokenistic involvement of PLHIV andPWUD [13, 23, 30], and clearly establishes tools formeaningful engagement.This hiring process has been adapted to meet the needsof individual community-academic collaborations wishingto involve PRAs in their research projects [35]. There area number of factors that future CBPR initiatives may wishto consider when engaging affected populations as keymembers of the research team, such as time and resourcecommitments. To reduce any biases stemming from priorinteraction between hiring committee and applicants, fu-ture CBPR-based hiring processes may want to blind ini-tial screening. It is important to have a strongunderstanding of the motives for conducting research in-formed by lived experiences, and how the inclusion ofPRAs fits within the visions and values of studies.Hiring guidelines and payment procedures within CBPRprojects that include PRAs as paid employees must betransparent. For example, CBOs need to carefully considerhow to define PRA roles—both as employees and cli-ents—within their organizations, including the type ofwork (e.g. part-time, casual, volunteer) and the nature ofremuneration (e.g. salary, hourly wage, honorarium).Furthermore, community and academic partners shouldalign their hiring process with the existing Human Re-sources policies of the organization where the successfulapplicants will be working.This paper has several limitations that should benoted. Although the hiring process sought to create low-barrier, equitable opportunities for PLHIV who usedrugs, further research is needed to evaluate the impactof PRA hiring processes and the use of ‘nothing aboutus without us’ principles on the quality of data collectionas well as participant and PRA experiences. Futureresearch could include more rigorous process evalua-tions involving various types of data collection (e.g. focusgroups, ethnographic observation, interviews) with allstakeholders involved in the hiring process. Such evalua-tions should also consider the impact of peer-informedhiring models on the self-perception and sense of own-ership of PRAs within CBPR projects. Finally, whilevocational opportunities for PLHIV may produce long-term benefits, we were unable to determine the natureand extent of these benefits.ConclusionThe hiring process described here aimed to ensure thatthe DPC study was conducted in the interest of thecommunity and that PLHIV who use drugs were ac-knowledged for their expertise acquired through livedexperience. Furthermore, this model and community-based study were developed to ensure that peers wereempowered to build research facilitation capacity andshare research results. Future CBPR studies aiming tohire PRAs should consider using similar guidelines toensure applicants are treated equitably, and also widelydisseminate details of their hiring processes to add tothe literature on engaging community members and af-fected populations in research. In this way, the researchfindings and methods contribute to positive, relevant,and actionable change that improves the health andwell-being of affected communities.Additional filesAdditional file 1: Job application form (DOCX 130 kb)Additional file 2: Interview guide (DOCX 127 kb)AbbreviationsASO: AIDS service organization; BCCfE: BC Centre for Excellence in HIV/AIDS;CAC: Community Advisory Committee; CBOs: Community-basedorganizations; CBPR: Community-based participatory research; DPAF: Dr.Peter AIDS Foundation; DPC: Dr. Peter Centre; GIPA/MIPA: Greater andmeaningful involvement of people living with HIV/AIDS; PLHIV: People livingwith HIV; PRA: Peer Research Associate; PWUD: People who use drugsAcknowledgementsWe extend our gratitude to members of the community who contributed tothis initiative: the Dr. Peter Centre staff; members of the Dr. Peter Centrestudy Community Advisory Board and hiring committee; Peer ResearchAssociate position applicants; and current and past researchers and staff atthe BC Centre for Excellence in HIV/AIDS, specifically James Nakagawaassisting with graphic design.FundingThis research was supported by a joint funding initiative of the CanadianInstitutes of Health Research and the Michael Smith Foundation for HealthResearch (grant number R-PHE-122186). RM is supported by the MichaelSmith Foundation for Health Research. Funders did not have a role in thestudy design; the collection, analysis, and interpretation of data; nor thepreparation of this manuscript.Availability of data and materialsAll materials pertaining to the hiring process described herein are availablein the Additional files as supplementary materials to this manuscript.Authors’ contributionsKC, SP, RM, and SF conceptualized the manuscript and KC wrote the originaldraft. RSH, SP, RM, PM, RBT, TH, and SF were involved in the methodologyand provided critical feedback, leadership, and revisions to the original draft.ABC provided editorial support and significant contributions to revising theoriginal draft. All authors read and approved the final manuscript.Competing interestsThe authors declare that they have no competing interests.Closson et al. Harm Reduction Journal  (2016) 13:26 Page 6 of 7Consent for publicationWritten informed consent to publish study findings was obtained from focusgroup participants and DPC study participants; however, this manuscriptdoes not include any personal identifiers.Ethics approval and consent to participateThe DPC study has been granted ethical approval from the Research EthicsBoards of the University of British Columbia/Providence Health Care (H12-02321), and Simon Fraser University (2012s0679).Author details1Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada.2BC Centre for Excellence in HID/AIDS, St. Paul’s Hospital, 608-1081 BurrardStreet, Vancouver, BC V6Z 1Y6, Canada. 3Dr. Peter AIDS Foundation,Vancouver, Canada. 4Positive living society and the British Columbia Centrefor Excellence in HIV/AIDS, Vancouver, Canada.Received: 18 May 2016 Accepted: 24 September 2016References1. 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