Reimagining care for Women living with HIV

Location: Massachusetts, New Hampshire, Vermont

role: ethnographer

Design Challenge

To better understand current care experiences for women living with HIV in rural New England and imagine new approaches that improve outcomes, reduce stigma, and enhance well-being

Overview

I examined the lives of women living with HIV in rural New England, using ethnographic research to evaluate how these women's social networks, interactions with medical institutions, and relationships with their communities affected how they utilized healthcare resources, experienced discrimination and stigma, and pursued varying degrees of social involvement and isolation.

Process

My methods included four months of conducting interviews and ethnographic research with women in their homes: I participated in their daily lives, helped them navigate available medical and social resources, observed their interactions with case managers and physicians, and attended HIV support groups, weekend retreats, and summer camps. To gain an even richer understanding of their circumstances, I also interacted with and interviewed their family members when possible, as well as their medical providers and other HIV specialists, social workers, physicians, and nurses. I co-taught a weekly HIV prevention course at a women’s prison in Vermont, collaborated with local healthcare professionals and activists in implementing a syringe exchange program in New Hampshire, and spent three months conducting participant observation at a local HIV/AIDS service organization to learn more about how case managers, outreach specialists, and peer advocates worked with this population.

Insights & Outcomes

After completing this research, I developed a thesis detailing my insights into how past experiences and perceptions of rejection isolated women without strong support networks and led them to self-impose further seclusion to avoid similar future occurrences in medical settings and in their casual and intimate relationships. I presented a condensed version of my findings to the Anthropology department at Dartmouth College. In addition, I compiled a report and distributed it to HIV/AIDS organizations in rural New England to provide practical insight into areas of service the women found to be problematic, and to suggest improvement strategies. These issues included the rapid turnover of case managers that made it difficult for the women to form bonds and necessitated painful reiterations of “telling their story,” a lack of transportation that hindered their ability to attend doctors’ appointments and obtain medications, confusion regarding eligibility for various benefits and resources, and the ways that the organization and logistics of established support groups failed to meet the women’s needs and constraints. I also created a visual storytelling asset to convey my major findings.

Most importantly, I emphasized a need for care experiences to consider and address the intersections of the challenges that these women faced in order to create satisfying and effective clinical encounters. While most of the women viewed HIV as only one of many problems they were confronting – in addition to pressing issues of poverty, gender-based violence, and the effects of past drug use – their physicians focused solely on HIV in their interactions, not recognizing or accounting for how HIV was intertwined with and often secondary to so many other aspects of their lives.