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.

The MI-PHOTOS Project: Understanding the Health and Wellbeing of Rural Historically Marginalized Mothers Through Photovoice.

Despite the persistent health inequities faced by rural women in the United States, few researchers have partnered with women in rural communities to co-create sustainable change. To fill this gap, Mothers Improving Pregnancy and Postpartum Health Outcomes Through stOry Sharing (MI-PHOTOS) employed a community-based participatory research (CBPR) approach by partnering with mothers, community leaders, and community-based organizations in Robeson County, North Carolina, a rural, racially diverse county. The project's aims were (a) to promote maternal health by listening to mothers' stories of having and raising children in their community and (b) to develop a shared understanding of these mothers' strengths and challenges. MI-PHOTOS utilized photovoice, an exploratory and qualitative CBPR methodology. Grounded theory guided data analysis. During photovoice discussions, conversation focused on maternal experiences and evoked strengths, facilitators, and barriers impacting maternal health. Themes focused on (a) MI-PHOTOS serving as a social support group for the community and family stressors that mothers faced and (b) the necessity of professional support programs. Three overarching findings emerged during this process: (a) MI-PHOTOS as an informal support group, (b) mental health stigmatization, and (c) the need to bridge home visiting programs with peer and confidential therapeutic services. Future work should incorporate mothers' and communities' strengths into program development by drawing on existing home visiting programs, identifying opportunities for peer-support, and creating referral networks for individual, confidential therapeutic services. Through continued community partnership, we can generate fuller understandings of mothers' experiences of having and raising children and ultimately promote health equity among rural mothers.