Paper: Intersectional stigma among midlife and older Black women living with HIV

JUDUL:

Intersectional stigma among midlife and older Black women living with HIV

Thurka Sangaramoorthy, Amelia Jamison & Typhanye Dyer (2017) Intersectional stigma among midlife and older Black women living with HIV, Culture, Health & Sexuality, 19:12, 1329-1343, DOI: 10.1080/13691058.2017.1312530

HIV-related stigma is a barrier to the prevention and treatment of HIV. For midlife and older Black women, the nature and intensity of HIV- related stigma may be compounded by their multiple marginalised social status based on gender, race, and age. We examined the perceptions and experiences of HIV-related stigma among midlife and older Black women living in Prince George’s County, Maryland, USA. Between 2014 and 2015, we conducted semi-structured interviews with a sample of 35 midlife and older Black women living with HIV. Using a modi ed grounded theory approach, we explored emergent themes related to the manifestation and experience of intersectional stigma and changes in stigma experience over time. Our ndings suggest that intersectional stigma is a central feature in midlife and older Black women’s lives, with women reporting experiences of intersectional stigma at the interpersonal/familial, community, and institutional/structural levels. Although women acknowledged gradual acceptance of their HIV-positive status over time, they continued to experience negative responses related to gender, race, age, and disease. Our ndings indicate that a more robust understanding of the impact of HIV-related stigma requires work to consider the complex manifestations of intersectional stigma among an increasingly aging population of Black women in the USA.

Important quotation

Experiences of intersectional stigma pp 1134

Manifestations of intersectional stigma for midlife and older Black women living with HIV operated at multiple levels – from the interpersonal/familial to the broader community to institutional/structural contexts.

Pg 1135

Interpersonal/familial experiences

Their HIV diagnosis had the most signicant impact on their role as women as they were forced to renegotiate their roles as daughters, sisters, mothers, girlfriends, and wives. Their HIV-positive status also intro- duced new forms of stigma related to gender roles.

Women felt further stigmatised by their decisions to have children or to remain childless.

You can’t be a good parent if you do those things – having men coming in and out, which I don’t.

In addition, women described how HIV-related stigma kept them from pursuing romantic or intimate relationships. Women often discussed their fears of disclosure due to potential rejection from men

HIV-related stigma and fear of disclosure further complicated intimate relationships as it created new avenues for manipulation and control. Many women recounted feelings of betrayal by male sexual partners who they felt infected them with HIV knowingly

women discussed how men often used HIV-related stigma to exert control over the relationship or engage in gender-based violence.

HIV is a disease but that the violence is always there

Pp 1136

Community-level experiences

This community silence stemmed primarily from the stigma attached to HIV. Women described community members as ‘uneducated’ and ‘judgemental’ toward those with HIV, particularly Black women.

Women also discussed how community perceptions of HIV di ered from other diseases disproportionately impacting women such as breast cancer, ‘I get upset because you see a commercial about breast cancer and women saying “I’m a ghter!” They got their hair cut o . They have the pink bags and pink ribbons. How many people you see on there saying “I’m HIV positive, I’m a ghter?” (Lori, 50 years of age).

Institutional/structural experiences

Women explained that negative stereotypes of Black women living with HIV led to further stigmatisation in health or social service settings and in the workplace. Women reported that stigma was highly prevalent in healthcare settings when they were rst diagnosed at the beginning of the epidemic.

Stigma in the workplace was a constant source of stress for women in our sample.

Changes in stigma experiences over time

Despite persistent experiences of stigma and discrimination, women reported that they were better able to cope with stigma and manage their condition as they aged.

My body is in control. I have authority over my body. I’m ghting because of it.

pp. 1138

Discussion

Intersectional stigma is a central feature in midlife and older Black women’s lives.

For midlife and older Black women, manifestations of HIV-related stigma intersected with and was compounded by various forms of inequality rendered through ageism, racism, and sexism, what Patricia Hill Collins (1990) has described as a matrix of oppression.

Sharing a positive HIV diagnosis with family introduced new forms of stigma related to gendered social dynamics

In addition, HIV-related stigma compounds experiences with intimate partner violence (IPV).

or midlife and older Black women, community-level experiences of intersectional stigma re ected pervasive public silence regarding HIV for fear of further denunciation, but also underscored the fetishisation of Black women’s sexuality.

Living with HIV over a prolonged timeframe, often decades, increased feelings of autonomy and resiliency among midlife and older Black women

While our ndings contribute to the very limited literature on resiliency, coping, and successful aging among midlife and older adults with HIV (Emlet et al. 2016; Emlet, Tozay, and Raveis 2010), they also signal the need for additional research on midlife and older Black women’s experiences in navigating employment sectors and public service agencies.

Conclusion

Experiences of stigma are not the result of single distinct factors for midlife and older Black women living with HIV; instead, they are multidimensional and complex. Gender, race, and age are inextricable when considering HIV-related stigma experiences disproportionately borne by midlife and older Black women, who face unique challenges and obstacles as well as demonstrate high levels of resilience. The emergent themes described in this study provide several important insights for future HIV planning and research agendas.

Currently, stigma-reduction programmes exclusively targeting African American and Black diasporic women are limited. Adapting a globally used HIV-related stigma reduction tool for African American women in the USA, one initiative used role playing and peer social support to help women learn how to successfully navigate stigmatising situations and dimin- ish its emotional e ects (Rao et al. 2012); another developed a self-care intervention using nurses to provide therapeutic and emotional support for African American mothers with HIV during home visits (Miles et al. 2003). Both of these initiatives integrated cultural strengths speci cally related to African American women, used multiple methods to deliver a variety of intervention components, and were attentive to participant burden and socio-cultural contexts of stigma. However, these initiatives did not su ciently demonstrate long-term stigma reduction impacts, address other forms of stigma related to gender, race, or age discrimination, or attend to mitigating stigma and discrimination at community, institutional, or structural levels (Loutfy et al. 2015).

More research is needed to develop and evaluate the e ectiveness of stigma reduction programmes focused speci cally on intersectional stigma and discrimination at the indi- vidual, community, and structural levels. For instance, stigma reduction public campaigns along with cultural and structural competency training in workplace and healthcare settings could be useful in positively shifting community and peer norms and reducing negative stereotyping and discrimination faced by midlife and older Black women living with HIV. Likewise, a greater focus on culturally sensitive, gender-responsive, and age-appropriate HIV programmes should be strongly considered to not only alleviate individual experiences of stigma, but also potentially reframe prevention to a wellness perspective for an increas- ingly aging population. Families and communities often set values and norms from early life, and building family wellness as part of HIV intervention programmes could serve as the foundation for combating HIV-related stigma (Rotheram-Borus et al. 2011). Furthermore, programmes should also take direct action to promote gender equality and intimate part- ner violence reduction, providing critically needed resources for women aging with HIV (Crepaz et al. 2009). Finally, programmes that promote and sustain successful aging may be bene cial to increasing retention and adherence among midlife and older adults living with HIV. 

In addition, HIV-related stigma compounds experiences with intimate partner violence (IPV). Women described male sexual partners’behaviours as duplicitous, knowingly infecting them with HIV, deceiving them into taking ART, and abandoning them altogether. Gender- based violence and gender inequality are increasingly noted as important determinants of HIV risk for women; however, further research on possible connections is necessary (Zierler et al. 2000)