Randy Jackson

Stigmatization as a Social Control Mechanism for Persons Living with HIV and AIDS

Stigmatization contributes to inequity by marginalizing persons living with HIV and AIDS (PHAs). In this study we examined the stigmatizing practices in health care settings from the perspectives of PHAs and health care providers (HCPs). A qualitative design, using a participatory action research approach, was used. Interviews and focus groups were completed with 16 aboriginal and 17 nonaboriginal individuals living with HIV (APHAs and PHAs) and 27 HCPs in Ottawa and Edmonton, Canada. We present findings to support the premise that stigmatization can be used as a social control mechanism with PHAs. Participants described both active and passive social control mechanisms: shunning and ostracizing, labeling, and disempowering health care practices. Forgiving behavior, balancing disclosure, practicing universal precautions, bending the rules, shifting services, and reducing labeling were strategies to manage, resist, and mitigate social control. The findings illustrate the urgent need for multilevel interventions to manage, resist, and mitigate stigma.

HIV Testing and Care in Canadian Aboriginal Youth: A community based mixed methods study

BackgroundHIV infection is a serious concern in the Canadian Aboriginal population, particularly among youth; however, there is limited attention to this issue in research literature. The purpose of this national study was to explore HIV testing and care decisions of Canadian Aboriginal youth.MethodsA community-based mixed-method design incorporating the Aboriginal research principles of Ownership, Control, Access and Possession (OCAP) was used. Data were collected through surveys (n = 413) and qualitative interviews (n = 28). Eleven community-based organizations including urban Aboriginal AIDS service organizations and health and friendship centres in seven provinces and one territory assisted with the recruitment of youth (15 to 30 years).ResultsAverage age of survey participants was 21.5 years (median = 21.0 years) and qualitative interview participants was 24.4 years (median = 24.0). Fifty-one percent of the survey respondents (210 of 413 youth) and 25 of 28 interview participants had been tested for HIV. The most common reason to seek testing was having sex without a condom (43.6%) or pregnancy (35.4%) while common reasons for not testing were the perception of being low HIV risk (45.3%) or not having had sex with an infected person (34.5%). Among interviewees, a contributing reason for not testing was feeling invulnerable. Most surveyed youth tested in the community in which they lived (86.5%) and 34.1% visited a physician for the test. The majority of surveyed youth (60.0%) had tested once or twice in the previous 2 years, however, about one-quarter had tested more than twice. Among the 26 surveyed youth who reported that they were HIV-positive, 6 (23.1%) had AIDS at the time of diagnosis. Delays in care-seeking after diagnosis varied from a few months to seven years from time of test.ConclusionIt is encouraging that many youth who had tested for HIV did so based on a realistic self-assessment of HIV risk behaviours; however, for others, a feeling of invulnerability was a barrier to testing. For those who tested positive, there was often a delay in accessing health services.

HIV testing experiences of Aboriginal youth in Canada: service implications

Abstract The objective of this study was to explore HIV testing experiences and service views of Canadian Aboriginal youth in order to provide information for HIV testing services. An exploratory, mixed-method, community-based research design was used for this study. Findings reported here are from 210 survey participants who had experienced an HIV test. Youth were recruited through 11 Aboriginal organizations across Canada, including AIDS service organizations, health centers, community organizations, and friendship centers. Youth who had tested for HIV ranged in age from 15 to 30 years of age (20% were <20), and came from First Nations (75%), Métis (14%), and Inuit (9%) backgrounds. Participants lived in all provinces and one territory. Over half (62%) were female. While the majority of survey respondents indicated at their last HIV test they had been treated with care (80%), respect (77%), or kindness (76%), some reported being treated with hostility (19%), fear (12%), discrimination (11%), avoidance (10%), or being treated in a bored way (15%). When asked about information they had received, 28% of survey respondents could not remember; 23% said they were not given any information, and 24% said their questions were not answered. Emotional reactions to testing ranged from anxiety/apprehension (64% of survey respondents) to being “calm” (19%). When asked for suggestions to improve testing services, participants indicated emotional support, compassion, professional yet personable services, and personalized HIV information were important. Study results suggest that to facilitate HIV testing for Aboriginal youth, testing services and counseling must be respectful, compassionate, non-judgmental, and culturally responsive in order to provide emotional support and HIV information that is meaningful and memorable.

The Experience of HIV Diagnosis Among Aboriginal People Living With HIV/AIDS and Depression:

In this article, we consider how the broad context of Aboriginal people’s lives can shape their experience and understanding of their HIV diagnosis. We conducted interviews across Canada with 72 Aboriginal people living with HIV who also reported feelings of depression. Consistent with what has been found in previous studies, participants responded to their HIV diagnosis with shock, disbelief, and often anger. Prior depression, drug and alcohol use, multiple losses, stigma, and social isolation also shaped how participants experienced their diagnosis. We consider how the history of colonization of Aboriginal communities in Canada relates to the experience of HIV diagnosis, and end with a discussion of the service implications of our findings.

Challenges to the involvement of people living with HIV in community-based HIV/AIDS organizations in Ontario, Canada

The Greater Involvement of People Living with HIV/AIDS Principle (GIPA) has been a core commitment for many people involved in the community-based HIV/AIDS movement. GIPA refers to the inclusion of people living with HIV/AIDS in service delivery and decision-making processes that affect their lives. Despite its central importance to the movement, it has received little attention in the academic literature. Drawing on focus group discussions among staff members and volunteers of AIDS service organizations, activists, and community members, we explore challenges to the implementation of the GIPA principle in community-based HIV/AIDS organizations in Ontario, Canada. Our findings reveal ways in which implementing GIPA has become more complicated over recent years. Challenges relating to health, stigma and disclosure, evolving HIV/AIDS organizations, and GIPA-related tensions are identified. This paper considers our findings in light of previous research, and suggests some implications for practice.

Aboriginal Youth Experiences of Accessing HIV Care and Treatment

The purpose of this community-based research was to examine the experiences of Canadian Aboriginal youth regarding accessing HIV testing and care services. We used a mixed method exploratory research design; 413 participants completed a self-administered survey and 25 youth participated in in-depth semistructured interviews. Findings reported here are from the 26 survey participants (12.4%) and nine interview participants (28.9%) who self-reported being positive for HIV. Results of this study suggest that some Aboriginal youth do not test for HIV until late in the course of their disease, and once diagnosed, a significant number of youth delay accessing care. Support from friends, family, and others is an important motivator for youth to initiate care and treatment. Integrated, comprehensive, youth-friendly, and culturally safe services are important to keep youth in care.

Barriers to well-being for Aboriginal gender-diverse people: results from the Trans PULSE Project in Ontario, Canada

Purpose – Despite health inequities experienced by Aboriginal and transgender (trans) communities, little research has explored the well-being of Aboriginal trans (gender-diverse) people. This paper aims to describe barriers to well-being in a sample of Aboriginal gender-diverse people in Ontario, Canada. Design/methodology/approach – In 2009-2010, 433 trans people in Canadas most populous province participated in a multi-mode health survey. In all, 32 participants identified as First Nations, Metis, or Inuit (Aboriginal); unweighted frequencies were calculated to describe their characteristics. Findings – Participants expressed diverse gender identities; 44 per cent identified with the pan-Aboriginal term two-spirit. High levels of poverty (47 per cent), homelessness or underhousing (34 per cent), and ever having to move due to being trans (67 per cent) were reported. In all, 61 per cent reported at least one past-year unmet health care need. Most participants had experienced violence due to being trans...

'Women are supposed to be the leaders': intersections of gender, race and colonisation in HIV prevention with Indigenous young people.

Focusing on gender, race and colonialism, this paper foregrounds the voices of Indigenous young people, their histories of oppression, their legacies of resistance and the continuing strengths rooted in Indigenous peoples, their cultures and their communities. Exploring the relationship between gender and colonialism, the paper speaks to the lived realities of young people from Indigenous communities across Canada. Over 85 young people participated in six different Indigenous community workshops to create artistic pieces that explored the connections between HIV, individual risk and structural inequalities. In the course of the research, Indigenous young people, and young Indigenous women in particular, talked about how gender intersects with race and colonisation to create experiences that are, at times, especially difficult for them. In this paper, young people discuss the ways in which colonialism has demeaned womens roles and degraded womens sexuality, and how continuing cultural erasure and assimilationist policies impact on their lives and on their bodies.

A comparison of virological suppression and rebound between Indigenous and non-Indigenous persons initiating combination antiretroviral therapy in a multisite cohort of individuals living with HIV in Canada.

BACKGROUND This study compared time to virological suppression and rebound between Indigenous and non-Indigenous individuals living with HIV in Canada initiating combination antiretroviral therapy (cART). METHODS Data were from the Canadian Observational Cohort collaboration; eight studies of treatment-naive persons with HIV initiating cART after 1/1/2000. Fine and Gray models were used to estimate the effect of ethnicity on time to virological suppression (two consecutive viral loads [VLs] <50 copies/ml at least 3 months apart) after adjusting for the competing risk of death and time until virological rebound (two consecutive VLs >200 copies/ml at least 3 months apart) following suppression. RESULTS Among 7,080 participants were 497 Indigenous persons of whom 413 (83%) were from British Columbia. The cumulative incidence of suppression 1 year after cART initiation was 54% for Indigenous persons, 77% for Caucasian and 80% for African, Caribbean or Black (ACB) persons. The cumulative incidence of rebound 1 year after suppression was 13% for Indigenous persons, 6% for Caucasian and 7% for ACB persons. Indigenous persons were less likely to achieve suppression than Caucasian participants (aHR=0.58, 95% CI 0.50, 0.68), but not more likely to experience rebound (aHR=1.03, 95% CI 0.84, 1.27) after adjusting for age, gender, injection drug use, men having sex with men status, province of residence, baseline VL and CD4+ T-cell count, antiretroviral class and year of cART initiation. CONCLUSIONS Lower suppression rates among Indigenous persons suggest a need for targeted interventions to improve HIV health outcomes during the first year of treatment when suppression is usually achieved.

Decolonizing Scoping Review Methodologies for Literature With, for, and by Indigenous Peoples and the African Diaspora: Dialoguing With the Tensions

This article summarizes our deepened understanding of decolonizing research with, for, and by Indigenous peoples and peoples of African descent that emerged from conducting a scoping review of the methodological literature and reflecting on our review process. Although our review identified decolonizing methodologies as a promising approach, we questioned if our scoping review process engaged in decolonizing knowing. To unpack the epistemological tensions between decolonizing knowing and Western ways of doing scoping reviews, we engaged in individual and collective reflective processes—dialoguing with the tensions—moving from individual immersion in the literature to transformative dialogues among the team. In reflecting upon our tensions with the scoping review process, themes that emerged included (a) ontological/epistemological disjunctures, (b) tensions with concepts and language, and (c) relationships with the literature and beyond. This reflexive process provides valuable insight into ways in which review methods might be made a decolonizing research experience.