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Community-based HIV prevention research among substance-using women in survival sex work: The Maka Project… Shannon, Kate; Bright, Vicki; Allinott, Shari; Alexson, Debbie; Gibson, Kate; Tyndall, Mark W Dec 8, 2007

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ralssBioMed CentHarm Reduction JournalOpen AcceMethodologyCommunity-based HIV prevention research among substance-using women in survival sex work: The Maka Project PartnershipKate Shannon*1,2, Vicki Bright1, Shari Allinott3,4, Debbie Alexson4, Kate Gibson4, Mark W Tyndall1,2 for the Maka Project PartnershipAddress: 1British Columbia Centre for Excellence in HIV/AIDS, Vancouver, Canada, 2Faculty of Medicine, University of British Columbia, Vancouver, Canada, 3Sex Workers United Against Violence (SWUAV), Vancouver, Canada and 4Women's Information Safe Haven (WISH) Drop-In Centre Society, Vancouver, CanadaEmail: Kate Shannon* -; Vicki Bright -; Shari Allinott -; Debbie Alexson -; Kate Gibson -; Mark W Tyndall -* Corresponding author    AbstractSubstance-using women who exchange sex for money, drugs or shelter as a means of basicsubsistence (ie. survival sex) have remained largely at the periphery of HIV and harm reductionpolicies and services across Canadian cities. This is notwithstanding global evidence of the multipleharms faced by this population, including high rates of violence and poverty, and enhancedvulnerabilities to HIV transmission among women who smoke or inject drugs. In response, aparticipatory-action research project was developed in partnership with a local sex work agencyto examine the HIV-related vulnerabilities, barriers to accessing care, and impact of currentprevention and harm reduction strategies among women in survival sex work. This paper providesa brief background of the health and drug-related harms among substance-using women in survivalsex work, and outlines the development and methodology of a community-based HIV preventionresearch project partnership. In doing so, we discuss some of the strengths and challenges ofcommunity-based HIV prevention research, as well as some key ethical considerations, in thecontext of street-level sex work in an urban setting.BackgroundSubstance-using women working in open street-level sexwork markets face a myriad of health risks, including per-vasive violence and assault, high rates of poverty andhomelessness, drug-related harms, stigma, and social iso-lation [1-3]. Mortality rates among drug-using women inVancouver, Canada, suggest a 50-fold increase as com-pared to the aged-matched general population, with thegreatest concentration of harms among sex workers in lowstatus, street-based, open sex work markets that frequentlyco-exist with open drug use markets [5,6]. Further, opensex work markets operating in criminalized prostitutionenvironments, such as Canada, the United Kingdom andparts of Australia, are largely unregulated, and heavilypoliced, with high rates of violence and victimization,child exploitation, trafficking, pimping, and frequentPublished: 8 December 2007Harm Reduction Journal 2007, 4:20 doi:10.1186/1477-7517-4-20Received: 10 April 2007Accepted: 8 December 2007This article is available from:© 2007 Shannon et al; licensee BioMed Central Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.Page 1 of 6(page number not for citation purposes)majority of women in street-level sex work [4]. Consistentevidence across sex work venues has documented thepolice crackdowns [7-11].Harm Reduction Journal 2007, 4:20 particular concern, women who exchange sex formoney, drugs, shelter, or other commodities as a means ofbasic subsistence (ie. survival sex work) have been shownto face a particularly elevated risk of HIV transmission[12], increasingly attributed to intersections of gender-based violence, substance use, and poverty [13,14]. Thesocial context and gendered norms of street-entrenchedsex work and drug-using populations suggest that bothviolence and gendered power dynamics mediate micro-risk environment and negotiation of risk reduction prac-tices of women in both intimate and client-worker rela-tionships [13,15,16]. Women injectors in survival sexwork are also significantly more likely to required assist-ance to inject and to have overlapping sexual and drug usepartnerships and large social networks that increase risk ofHIV infection [17,18]. Following the emergence ofsmokeable crack cocaine in many cities across NorthAmerica, a synergistic relationship between survival sexand crack cocaine has been associated with enhanced riskfor STI and HIV transmission among women, heightenedviolence and exploitation, and decreased control of work-ing conditions [19-21]. In addition, women of Aboriginalancestry continue to be highly overrepresented in newHIV infections among injection drug users [22], and con-stitute the majority of women working in the lowest pay-ing tracks across Canadian cities [23].In Vancouver, Canada, a city drug policy response, knownas the Four Pillars strategy, and several innovative harmreduction efforts have been shown to be highly successfulin reducing the harms of drug users, including primaryand secondary prevention, extensive fixed and mobilesyringe exchange programs, a heroin maintenance trialand two supervised injection facilities [24,25]. Yet therecontinues to lack a systematic response to the alarmingrates of violence and health-related harms faced by sub-stance-using women in street-level sex work in this setting[26]. The absence of a gender-specific harm reduction andprevention efforts is particularly noteworthy given theongoing violence and victimization of sex workers in thissetting [27,28], including a highly profiled case of mur-dered and missing women. Furthermore, consistent evi-dence both locally and internationally suggests thatwomen in sex work are consistently less likely to utilizeconventional health and HIV service models due to lack ofaccess, restrictive hours, absence of women specific serv-ices, high levels of stigma and concerns of privacy and dis-closure [29-31].In an effort to respond to existing gaps in prevention andpolicy, a community-based HIV prevention researchproject was developed to investigate the health-relatedharms, service barriers, and impact of current harm reduc-lines the development and methodology of the MakaProject Partnership, and discusses some of the strengthsand challenges of community-based HIV preventionresearch, as well as ethical considerations, in the contextof survival sex work in an urban setting.MethodsDevelopment of CBR PartnershipAn initial gap in service access, HIV prevention and harmreduction for survival sex workers was identified as a keyissue through informal conversations between health pro-viders, staff, and sex workers at an inner city drop-in cen-tre. In operation since 1987, Women's Information SafeHaven (WISH) Drop-In Centre Society connects with anestimated 200 women engaged in survival sex work pernight. While the mandate is not exclusive to Aboriginalwomen, over half of the women that come through itsdoors are of First Nations, Metis and Inuit ancestry. Theproject works closely with WISH's well-established Abo-riginal Health and Safety Project for Women in the SexTrade (AHIP), as well as other key Aboriginal and sexwork collaborators.In 2004, researchers were approached to collaborate onan initial needs assessment of women attending the drop-in. The results led to the conception and design of both aresearch and a service arm [29]. The service arm focuses onpeer outreach, resource development, and ongoing well-ness nights at the drop-in that help to support the knowl-edge translation activities of the research arm. The CBRproject partnership, initiated in late 2005, was developedand continues to be supported through active consulta-tion and exchange of information between researchersand community. The community co-investigators repre-sent sex work, Aboriginal, and youth service organiza-tions. The research is guided by sex-for-work perspectiveand adheres to participatory-action research methodolo-gies [32,33]. In particular the project is guided by theOCAP principles of ownership, control, access and posses-sion initially developed by the First Nations' GovernanceCommittee and subsequently adopted by the CanadianAboriginal AIDS Network (CAAN). Providence Health/UBC Ethics Review Board provided ethical approval forthis study. In addition, PACE Policy Group provided com-munity ethics review from a sex work research and policyperspective and the project adheres to these best practices[34].Peer InvolvementA key component of the project is capacity-buildingamong a team of women in survival sex work, supportedby an open Community Advisory Board (CAB), thatinform all stages of the project. Initial CAB tasks were toPage 2 of 6(page number not for citation purposes)tion and prevention strategies among women working insurvival sex work in Vancouver, Canada. This paper out-identify the working role of the CAB and develop a hiringprocess for peer team of women. The hiring process aimedHarm Reduction Journal 2007, 4:20 ensure a transparent process, including extensive andflexible options for informing and inviting women to con-tact the project (outreach, community agency visits, openhouse for women) and the creation of a community-peerhiring panel (CAB members). Through this process, ateam of women with a lived experience of survival sexwork were hired, trained and support to play an active rolein guiding, developing and conducting the research. Thesepositions are low-threshold employment positions thatwork from a harm reduction perspective, similar to mod-els of other sex work and drug-user groups. There is con-siderable focus on capacity building and training, as wellas ongoing support and referral for addictions counsel-ling, drug treatment, supportive housing, and child care.Extensive training modules were conducted in collabora-tion with local community agencies and sex work groups,including sex work specific training created and con-ducted by Prostitution Alternatives, Counselling and Edu-cation (PACE) Society on lateral oppression, vicarioustrauma, debriefing and conflict resolution; participatory-action research principles, methodologies, ethics, andinformed consent; and health, HIV/HCV prevention, andharm reduction conducted by community health provid-ers, sex work groups, and Aboriginal agencies.Multi-Research MethodologiesIn keeping with community-based research principles,this project adopts multiple research methodologies,including ongoing qualitative focus group discussions,social mapping, and a prospective cohort (6 monthlyinterview questionnaires and HIV screening) over a three-year period. All focus group discussions are facilitated orco-facilitated by a member of the peer team and informthe 'lived experiences' of survival sex work and barriersand facilitators for prevention and harm reduction efforts.Individual informed consent is obtained prior to the dis-cussion group and verbal rather than written consent isprovided at the time of the interview, due to participantconcerns of confidentiality. Discussion groups lastapproximately two hours and all participants receiveCan$25 compensation for their expertise and time.MappingA particularly novel component of the project is the socialmapping, a participatory-action research tool that facili-tates community access to hidden populations and high-lights local expertise. Initial piloting of the maps with over60 women facilitated by the Maka peer team has informedsubsequent recruitment and outreach efforts for bothresearch and service arms of this project. In particular,women are provided with a map of Vancouver's Down-town Eastside and surrounding communities and asked tomark 1) strolls where they work and live; 2) current work-impacted by police presence and harassment; 5) areas ofhealth and syringe availability and disposal.Time-Space SamplingGiven the difficulty in accessing a representative sample ofsex workers due to the illegal and clandestine nature of sexwork and unknown boundaries of this population [35],mapping and time-space sampling strategies were use toenhance attempts to obtain a representative sample of sur-vival sex workers, supported by standard outreach recruit-ment strategies used among street-involved populations.Time-space sampling strategy is a probability-basedmethod used to enrol members of a hidden population attimes and places where they congregate rather than live[36,37], with physical spaces (such as bars, parks, or sexwork strolls) rather than persons as the primary samplingunit. Although time-space sampling has been primarilyused with MSM populations in gay venues [36,37], theadaptation of this strategy to sex work research is promis-ing. Based on sex work strolls identified through the ongo-ing mapping, in 2006, the peer outreach team conductedsystematic outreach during staggered working hours (latenight, early morning and daytime) and locations (sexwork strolls) to invite women to participate. A researcheror nurse accompanied the outreach team during the latenight outreach hours to ensure safety through use of avehicle and facilitate mobile outreach to more dispersedareas. Staggered days of the week, as well as times of themonth were used to ensure as representative a sample aspossible. Following initial recruitment, the majority ofwomen were invited to participate in the interviews thefollowing day at the project office, an area close to severalof the strolls. Based on youth consultations and identifiedbarriers among younger women, specific communitydrop-in and commercial spaces (such as corner stores, cof-fee shops) were identified close to the strolls to conductthe interview questionnaires with youth. As well, if busi-ness was slow, women conducted the interviews duringthese late night hours and the worker, along with theMaka outreach team and nurse, would chose a safe andprivate location.Prospective cohortThrough time-space sampling, a total of 205 women wereinitially invited and agreed to participate in a baseline visitover a six month period in 2006 (response rate of 93%),with ongoing 6 monthly follow-up visits scheduled tocontinue through 2008. Baseline and follow-up includedetailed interview questionnaires administered by thepeer interviewers and HIV screening by the project nurse,supported by extensive pre and post-test counselling.Women 14 years of age and older who have used illicitsubstances (not including marijuana) within the lastPage 3 of 6(page number not for citation purposes)ing conditions (lighting, phones); 3) high and low riskareas for violence and bad dates; 4) working areasmonth and are actively engaged in street-level sex work areeligible to participate. Semi-structured interview question-Harm Reduction Journal 2007, 4:20 elicit responses related to current and past experi-ences of sex work, violence and trauma, health andaddition service access, working conditions, and sexualand drug-related harms. HIV screening is completed bythe project nurse using the INSTI rapid HIV test (Biolyti-cal, Vancouver), and new reactive tests are confirmed bywestern blot. A pre-test counseling questionnaire is com-pleted by the project nurse on detailed questions relatingto overall health, experiences with HIV and Hepatitic Ctesting, and current and past abuse experiences in order tofacilitate counselling and referral to support services. Par-ticipants receive Can$25 compensation at baseline andeach follow-up visit.Results & DiscussionSex work researchers have described some of the key ethi-cal issues and challenges in conducting non-exploitativeresearch in this population both in Canada and interna-tionally [34,35,38-40]. Of particular concern has been thelack of sampling frame due to the unknown size andboundaries of sex work populations, concerns of privacyand confidentiality due to stigma and illegality of sexwork and drug use, and finally, dichotomies of sex workand victimization that precipitate misconceptions of sexwork industry as homogenous [35]. Through the develop-ment of this CBR partnership and methodology, severaladditional strengths and challenges emerged, as well asethical issues, related to HIV prevention research with sur-vival sex workers in this setting that are of important con-sideration.Privacy and confidentialityThe concern of ensuring privacy and confidentiality ofparticipants requires particular consideration in the sexwork context, in addition to raising some key ethicalissues related to HIV prevention research. Given histori-cally oppressive nature of research of sex work, significantconcern from the onset by both community partner andsex work activists was that the research did not further stig-matize a highly marginalized population of women, orfalsely precipitate sex workers as "vectors of disease". Aconcern similarly voiced in other settings across the globe[39,41]. As such, the involvement of women in sex workand the community partner organization in all aspects ofthe research, from conception and design, to interpreta-tion and dissemination of results, is a core aspect of ensur-ing accountability of the research.Ethical IssuesTwo key ethical issues emerged of important relevance inHIV related research with sex work populations. First,while HIV is a reportable illness using the standard ELISAtest, the new rapid point of care test provides women withthat the INSTI test is not a diagnostic test, and a reactivetest needs to be confirmed by a western blot, as per stand-ard of care. Women have the choice of being referred to aphysician for follow-up testing, or completing the follow-up testing at the Maka Project office. Early findings suggestincreased acceptability and utilization of point of caretesting among a highly marginalised population ofwomen, with 96% of women agreeing to HIV screening atfirst visit. Within this context, the role of HIV reportabilityand disclosure in survival sex work needs to explored [34],particularly given growing reports of criminalization ofnon-disclosure in the Canadian setting[42].Secondly, issues around current violence experienced byyouth less than 18 years of age is a major limitation toresearch with legal minors [43], and has been previouslydescribed in this setting among at-risk, street youth [44].A large number of youth (under 18 years of age) areinvolved in survival sex work, with early research fromthis project identifying a median age of sex initiation ofless than 18 years. Of particular concern, initiation of sexwork during adolescents (less than 18 years) was inde-pendently associated with a two-fold increased odds ofbaseline HIV infection [45]. It is therefore crucial that sexwork research engages adolescent and young women inthe research during these critical time periods and identi-fies HIV prevention strategies tailored to this population.However a requirement by law is that any disclosure ofviolence among those less than 18 years of age must bereported to health authorities, including exploitation of aminor, thus placing the duty to report on researchersGiven the difficulty in engaging this population and thehigh rates of violence known among women and youth insurvival sex work, this represents a substantial limitation.Further exploration of youth reporting requirements froma policy perspective is warranted, particularly as it relatesto sex work and exploitation of minors.Participatory-Action Research ProcessConsistent with recent literature on public health partner-ships [46], the CBR research project was developedthrough a process of co-construction of knowledge in thenegotiated space of sex workers, community and the aca-demic partners. This negotiated space, the "sociosanitaryspace", is a process inherent in participatory-actionresearch and public health partnerships with marginal-ized populations as it seeks to confront and reduce powerimbalances. It has been increasingly shown that thistransdisciplinary dialogue can propose new ends to publichealth, rather than applying standardized solutions tohealth disparities by outside experts [46].However, a particular challenge to the CBR process in thisPage 4 of 6(page number not for citation purposes)the opportunity to receive anonymous HIV screening.Women are advised during extensive pre-test counsellingcommunity has been the balancing of interests of aca-demic and community partners, as well as survival sexHarm Reduction Journal 2007, 4:20 themselves. Three sets of partners are representedin the research: a service agency for sex workers, survivalsex workers, and the researchers. Emerging discussions incommunity-based HIV prevention research have focusedon the challenges of defining a "community" in the CBRprocess [47]. In health, community often refers to individ-uals who share cultural, social or economic ties and aphysical space [48], while others suggest a broader defini-tion of common culture, social structure and awareness ofan identity as a group. A particular concern from the onsetof this project was that those working in service organiza-tions do not necessarily reflect the voice of women on thestreet. Sex workers working in service organizations mayhave different access to resources than those who struggledaily with poverty and addictions, and as such, may havedifferent perspectives on prevention needs. In order toensure equal representation, our CAB includes at leastequal number of survival sex workers. In addition, similarto other peer-based organizations in this community,women were hired into low threshold employment allow-ing those with survival sex work experience, a voice sel-dom heard in sex work activism, to play an active role inthe guiding the research process.In addition to the many strengths of ensuring activeinvolvement of those currently involved in survival sexwork for both sex workers and researchers [38,39,49],there were several challenges that emerged in terms of sus-tainability of low threshold employment positions forwomen, and time-investment in the process. The inherentneed for significant flexibility in structure of peer posi-tions that support women living with addictions and pov-erty presented challenges in sustainability and resourcesfocused on training and support. Ongoing challengeswith women in and out of corrections, detoxification anddrug treatment, as well as issues of housing, childcare andaddictions play a constant role in carrying out the project.For many women, their dual roles as researchers and par-ticipants constitutes both a positive experience, as well asa challenge. In particular, the shift in their positionswithin the street-level sex work community presentedunique considerations in terms of protection of confiden-tiality and privacy as professionals. As well, the potentialfor issues, such as violence, to trigger women during theresearch process was of ongoing consideration. Extensivetraining carried out by sex work agency and health provid-ers, weekly project staff meetings, including a check-inand out, as well as ongoing debriefing sessions help facil-itate and ensure a positive experience for both sex workersand researchers. Further, consideration of increased allo-cation of research resources for capacity-building and peersupport will help to sustain the effectiveness of CBR part-nerships.ConclusionHigh rates of health and drug-related harms, includingviolence and victimization, persist among women in openstreet-level sex worker markets in cities across Canada,and globally [27,28,50,51]. Yet despite a highly publi-cized HIV epidemic and ongoing prevention and harmreduction interventions targeting injection drug users inthis setting, there remains a clear lack of policy and inter-ventions tailored to promoting the health and safety ofsubstance-using women working in survival sex work. Assuch, this community-based HIV prevention researchpartnership is well situated to inform evidence-based pre-vention and policy responsive to the needs of this popula-tion. Furthermore, the development and methodology ofthis CBR partnership offers important insight intostrengths and challenges, as well as ethical considerations,of community-based HIV prevention research among sub-stance-using women who engage in survival sex work inan urban setting.Authors' contributionsKS conceptualized the manuscript, wrote the originaldraft, and incorporated suggestions from authors into thefinal version of the manuscript. VB, SA, DA, KG and MWTwere involved in conception of the methodology and pro-vided critical feedback on content and revisions to theoriginal draft. All authors read and approved the final ver-sion of the manuscript.AcknowledgementsWe would like to thank all women and community partners who continue to provide their expertise and time to this project, particularly Vicki Bright, Jill Chettiar, Laura Housden, Devi Parsad, and the peer research team: Adrian, Chanel, Sandy, Shawn, Rose, Laurie, and Laura. The Maka Project is supported by operating grants from the Canadian Institutes of Health Research (CIHR), and the service arms is supported by the AIDS Commu-nity Action Program (ACAP). KS, MR, and MWT are supported by Michael Smith Foundation for Health Research. KS is also supported by CIHR and Gender Women. The Maka Project is supported by operating grants from the Canadian Institutes of Health Research (CIHR). KS and MWT are sup-ported by Michael Smith Foundation for Health Research. KS is also sup-ported by CIHR and Gender Women and Addictions Research Program funding, a strategic initiative of CIHR.References1. Sanders T: A continuum of risk? Management of health, phys-ical and emotional risks by female sex workers.  Sociology ofHealth & Illness 2004, 26(5):557-574.2. Gilchrist G Gruer, L., Atkinson, J.: Comparison of drug use andpsychiatric morbidity between prostitute and non-prostitutefemale drug users in Glasgow, Scotland.  Addict Behav 2005,30(5):1019-1023.3. 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