Ethical inclusion: Risks and benefits of research from the perspective of perinatal people with opioid use disorders who have experienced incarceration.

BACKGROUND: Research ethics guidelines and emphasis on representation in research guide the inclusion of marginalized groups, including people with perinatal opioid use disorders (OUD) and people experiencing incarceration in the United States. However, insights from participants regarding the risks and benefits of participation are not adequately considered. The aim of this study was to examine the risks and benefits of research participation from the perspective of pregnant/postpartum people with OUD who have experienced incarceration. DESIGN: We recruited people who had experience with perinatal incarceration and were either currently pregnant or postpartum, and at least 18 years old. All participants met the clinical criteria for OUD. Our study did not have exclusion criteria based on gender, race, or ethnicity. SETTING: Participants were either currently incarcerated at the North Carolina Correctional Institute for Women in Raleigh, North Carolina, United States or had previously experienced perinatal incarceration and were recruited from a perinatal substance use disorder treatment program located in North Carolina. PARTICIPANTS: Between 9/2021-4/2022, we completed 12 interviews with pregnant/postpartum people with OUD, approximately half who were currently incarcerated and half with a recent history of perinatal incarceration. INTERVENTION/MEASUREMENT: Interviews were conducted via Webex phone or video. The interviews followed a scripted interview guide and lasted one hour on average. Interview transcripts were analyzed using the Rigorous and Accelerated Data Reduction technique to produce an overarching thematic framework. FINDINGS: Our analysis identified benefits, including the personal advantage of self-expression, helping others and contributing to change, and financial incentives. Risks included stigma and breach of confidentiality, misunderstanding of the distinction between research and advocacy, and limited ability to share their whole experience. CONCLUSIONS: Participant-identified benefits of research mirrored those from other marginalized populations, though participant-identified risks were novel and nuanced. Recruitment and consent should move beyond normative research ethics committees protocol language to consider the perspectives of participants.

PrEP and HIV prevention decision-making among social network members of women who have experienced incarceration: a qualitative study.

ABSTRACTIncarceration and HIV are a syndemic for US women, yet very few women who have experienced incarceration use pre-exposure prophylaxis (PrEP) for HIV. We conducted semi-structured interviews with 32 participants recruited by women who have experienced incarceration from their social networks, informed by the modified social ecological model for PrEP. Emergent themes from the interviews included individual-level (low personal HIV risk assessment, personal responsibility for HIV prevention, and decisions in addiction versus recovery), network-level (influential sex partners and the importance of trust, supportive treatment peers, and high-risk but indifferent drug use networks), community-level (stigma, and mitigation of stigma in supportive substance use disorder treatment environments), and public policy-level (incarceration and PrEP cost and access) determinants. PrEP interventions for women who have experienced incarceration and their networks will need to incorporate contingency planning into HIV risk assessment, navigate complex network dynamics, and be situated in trusted contexts to address structural barriers.

The influence of social relationships on PrEP attitudes among women with incarceration experience in the Southeastern USA.

Women who have experienced incarceration face a disproportionately high risk of acquiring HIV. Despite efficacy of pre-exposure prophylaxis (PrEP) for HIV, very few women with incarceration histories are using PrEP. Our objective was to learn how sexual, drug-use and social relationships shape decisions about PrEP among women who have experienced incarceration. We used an inductive approach to analyse data from four focus groups undertaken with women who had previously experienced incarceration recruited from three community-based organisations. We identified public policy (medical distrust, lack of prevention in prisons and jails, and cost and coverage of PrEP); community (incarceration stigma, gossip as prevention); social and sexual network (positive peer and parenting relationships, distrust of sexual partners, and networks as a source of risk); and individual-level (active addiction or recovery, change after incarceration, and medical concerns) factors influencing the use of PrEP. Actions and interventions to improve PrEP uptake among women who have experienced incarceration must take account of the multilevel context of HIV prevention decisions.