"If you're strung out and female, they will take advantage of you": A qualitative study exploring drug use and substance use service experiences among women in Boston and San Francisco.

BACKGROUND: Significant disparities in substance use severity and treatment persist among women who use drugs compared to men. Thus, we explored how identifying as a woman was related to drug use and treatment experiences. METHODS: The study recruited participants for a qualitative interview study in Boston and San Francisco from January-November 2020. Self-identified women, age ≥ 18 years, with nonprescribed opioid use in the past 14 days were eligible for inclusion. The study team developed deductive codes based on intersectionality theory and inductive codes generated from transcript review, and identified themes using grounded content analysis. RESULTS: The study enrolled thirty-six participants. The median age was 46; 58 % were White, 16 % were Black, 14 % were Hispanic, and 39 % were unstably housed. Other drug use was common with 81 % reporting benzodiazepine, 50 % cocaine, and 31 % meth/amphetamine use respectively. We found that gender (i.e., identifying as a woman) intersected with drug use and sex work practices and exacerbated experiences of marginalization. Violence was ubiquitous in drug use environments. Some women reported experiences of gender-based violence in substance use service settings that perpetuated cycles of trauma and reinforced barriers to care. Substance use services that were women-led, safe, and responsive to women's needs were valued and sought after. CONCLUSION: Women reported a cycle of trauma and drug use exacerbated by oppression in substance use services settings. In addition to increasing access to gender-responsive care, our study highlights the need for greater research and examination of practices within substance use service settings that may be contributing to gender-based violence.

Women's Understandings and Misunderstandings of Breast Density and Related Concepts: A Mixed Methods Study.

Background: Most U.S. states require written notification of breast density after mammograms, yet effects of notifications on knowledge are mixed. Little is known about potential misunderstandings. Methods: We used a sequential mixed-methods study design to assess women's knowledge about breast density, after receiving a notification. We conducted a telephone survey among a racially/ethnically and health-literacy level diverse sample (N = 754) and qualitative interviews with 61 survey respondents. Results: In survey results, 58% of women correctly indicated that breast density is not related to touch, with higher accuracy among non-Hispanic White women and those with greater health literacy. Next, 87% of women recognized that breast density is identified visually via mammogram, with no significant differences in responses by race/ethnicity or health literacy. Most (81%) women recognized that a relationship exists between breast tissue types and density; Non-Hispanic White women were less likely to respond correctly. Only 47% of women correctly indicated that having dense breasts increases one's risk of breast cancer; women with low health literacy were more often correct. Qualitative results revealed additional dimensions of understanding: Some women incorrectly reported that density could be felt, or dense breasts were lumpier, thicker, or more compacted; others identified "dense" tissue as fatty. Interpretations of risk included that breast density was an early form of breast cancer. Conclusion: We found areas of consistent knowledge and identified misperceptions surrounding breast density across race/ethnicity and health literacy levels. Further education to address disparities and correct misunderstandings is essential to promote better knowledge, to foster informed decisions.

"No home to take methadone to": Experiences with addiction services during the COVID-19 pandemic among survivors of opioid overdose in Boston.

INTRODUCTION: We conducted a qualitative study to explore the impact of the COVID-19 pandemic on experiences with addiction treatment and harm reduction services. METHODS: The study recruited participants from Boston, Massachusetts, aged 18-65 who had a history of opioid use disorder and overdose, from a parent study (REpeated dose Behavioral intervention to reduce Opioid Overdose, REBOOT) to participate between August and October 2020. In-depth individual interviews explored the impact of the COVID-19 pandemic on addiction service experiences. We conducted a grounded content analysis that examined codes related to addiction service access and engagement during the pandemic to compare and categorize participants according to their experiences. RESULTS: The study enrolled twenty participants. The mean age was 42 years; most identified as white (n = 16); ten participants identified as men, nine as cis-gender women, and one as a trans-gender woman. Participants described their experiences with COVID-19-driven changes to addiction care (methadone take homes, televisits for either buprenorphine or behavioral health services, and syringe service outreach) access and engagement as: 1) liberating (n = 7), 2) destabilizing (n = 8), or 3) unjust (n = 5). Participants in the liberating group found adaptations allowed for increased flexibility, freedom, and safety from COVID-19. This group was mostly housed and had strong social supports that facilitated participation in adapted treatment programs. COVID-19-related changes to addiction treatment disrupted routine and community supports among those in the destabilizing group. Participants in the unjust group felt that adaptations exacerbated inequities as a lack of housing and other social supports prohibited them from benefiting from the relaxed restrictions to methadone or buprenorphine. This group was mostly unhoused and found that adaptations did not adequately mitigate other inequities worsened by public health mandates for unhoused people who use drugs. CONCLUSION: Relaxed restrictions on medications for opioid use disorder created opportunities for improved patient-centered care. Concrete measures that address service barriers, such as phone or transportation access, may have reduced destabilizing and unjust experiences reported by our participants. However, addiction care inequities will persist if drivers of marginalization, specifically a lack of housing, remain unaddressed.

Using Mixed Methods With Multiple Stakeholders to Inform Development of a Breast Cancer Screening Decision Aid for Women With Limited Health Literacy.

Background. When stakeholders offer divergent input, it can be unclear how to prioritize information for decision aids (DAs) on mammography screening. Objectives. This analysis triangulates perspectives (breast cancer screening experts, primary care providers [PCPs], and patients with limited health literacy [LHL]) to understand areas of divergent and convergent input across stakeholder groups in developing a breast cancer screening DA for younger women with LHL. Design. A modified online Delphi panel of 8 experts rated 57 statements for inclusion in a breast cancer screening DA over three rounds. Individual interviews with 25 patients with LHL and 20 PCPs from a large safety net hospital explored informational needs about mammography decision making. Codes from the qualitative interviews and open-ended responses from the Delphi process were mapped across stakeholders to ascertain areas where stakeholder preferences converged or diverged. Results. Four themes regarding informational needs were identified regarding 1) the benefits and harms of screening, 2) different screening modalities, 3) the experience of mammography, and 4) communication about breast cancer risk. Patients viewed pain as the primary harm, while PCPs and experts emphasized the harm of false positives. Patients, but not PCPs or experts, felt that information about the process of getting a mammogram was important. PCPs believed that mammography was the only evidence-based screening modality, while patients believed breast self-exam was also important for screening. All stakeholders described incorporating personal risk information as important. Limitations. As participants came from one hospital, perceptions may reflect local practices. The Delphi sample size was small. Conclusions. Patients, experts, and PCPs had divergent views on the most important information needed for screening decisions. More evidence is needed to guide integration of multiple stakeholder perspectives into the content of DAs.

Communicating to Engage: An Improvisational Theater-Based Communication Training Designed to Support Community-Academic Partnership Development.

PROBLEM: The potential for community-engaged research to address health inequity requires deliberate effort to create trusting and equitable community-academic partnerships. A lack of evidence-based opportunities for cultivating such partnerships remains a barrier. APPROACH: In 2017 and 2018, the authors designed, facilitated, and evaluated a mixed stakeholder training, Communicating to Engage, at 2 urban academic medical centers involved in the All of Us research program, Boston Medical Center and Mass General Brigham. The goal was to bring together researchers and community members to develop communication skills through improvisational theater-based co-learning. The curriculum was inspired by several evidence-based learning frameworks including community-based participatory research principles and improvisational theater techniques. A self-administered survey completed before and after the training session measured participants' communication skills using the Self-Perceived Communication Competence Scale (SPCCS) and comfort with specific communication styles as outlined in the program's training objectives. Paired t tests were used to measure changes in scaled responses among combined participants and separately among self-identified community members and researchers. OUTCOMES: Sixty-nine total participants across 6 workshops completed training evaluations. Overall, pre-post survey analysis demonstrated significant mean score improvement for both the SPCCS and comfort with specific communication styles. In stratified analysis, both community members (n = 26) and researchers (n = 38) reported significant improvement in scores related to comfort with specific communication styles. Only researchers, but not community members, had significant improvement in SPCCS scores. NEXT STEPS: The Communicating to Engage program brought community and researcher stakeholders together and demonstrated improvement in self-perceived communication styles, yet researcher participants benefited more than community participants. Future innovation is necessary to further target community stakeholder communication training needs. Mixed stakeholder improvisational theater-based learning provides deliberate opportunities to build new community-academic partnerships that may enhance health equity initiatives.

Competing risks of women and men who use fentanyl: "The number one thing I worry about would be my safety and number two would be overdose".

BACKGROUND: Standard public health approaches to risk communication do not address the gendered dynamics of drug use. The aim of this study was to explore perceptions of fentanyl-related risks among women and men to inform future risk communication approaches. METHODS: We conducted a qualitative study, purposively sampling English-speaking women and men, aged 18-25 or 35+ years, with past 12-month illicitly manufactured fentanyl use. In-depth individual interviews explored experiences of women and men related to overdose and fentanyl use. We conducted a grounded content analysis examining specific codes related to overdose and other health or social risks attributed to drug use. Using a constant comparison technique, we explored commonalities and differences in themes between women and men. RESULTS: The study enrolled twenty-one participants, 10 women and 11 men. All participants had personal overdose experiences. Both women and men described overdosing as a "chronic" condition and expressed de-sensitization to the risk of overdose. Women and men described other risks around health, safety, and state services that often superseded their fear of overdose. Women feared physical and sexual violence and prioritized caring for children and maintaining relations with child protective services, while men feared violence arising from obtaining and using street drugs and incarceration. Only women reported that fear of violence prevented their utilization of harm reduction services. CONCLUSIONS: Experiences with overdose and risk communication among people who use fentanyl-containing opioids varied by gender. The development of gender-responsive programs that address targeted concerns may be an avenue to enhance engagement with harm reduction and treatment services and create safe spaces for women not currently accessing available services.

Engaging Women with Limited Health Literacy in Mammography Decision-Making: Perspectives of Patients and Primary Care Providers.

BACKGROUND: Limited health literacy is a driver of cancer disparities and associated with less participation in medical decisions. Mammography screening decisions are an exemplar of where health literacy may impact decision-making and outcomes. OBJECTIVE: To describe informational needs and shared decision-making (SDM) experiences among women ages 40-54 who have limited health literacy and primary care providers (PCPs). DESIGN: Qualitative, in-depth interviews explored experiences with mammography counseling and SDM. PARTICIPANTS: Women ages 40-54 with limited health literacy and no history of breast cancer or mammogram in the prior 9 months were approached before a primary care visit at a Boston academic, safety-net hospital. PCPs practicing at this site were eligible for PCP interviews. APPROACH: Interviews were audio-recorded and transcribed verbatim. A set of deductive codes for each stakeholder group was developed based on literature and the interview guide. Inductive codes were generated during codebook development. Codes were compared within and across patient and PCP interviews to create themes relevant to mammography decision-making. KEY RESULTS: The average age of 25 interviewed patients was 46.5; 18 identified as black, 3 as Hispanic, 2 as non-Hispanic white, and 2 had no recorded race or ethnicity. Of 20 PCPs, 15 were female; 12 had practiced for >5 years. Patients described a lack of technical (appropriate tests and what they do) and process (what happens during a mammogram visit) knowledge, viewing these as necessary for decision-making. PCPs were reluctant to engage patients with limited health literacy in SDM due to time constraints and feared that increased information might confuse patients or deter them from having mammograms. Both groups felt pre-visit education would facilitate mammography-related SDM during clinical visits. CONCLUSION: Both patients and PCPs perceived a need for tools to relay technical and process knowledge about mammography prior to clinical encounters to address the scope of information that patients with limited health literacy desired.

Age-based preferences for risk communication in the fentanyl era: 'A lot of people keep seeing other people die and that's not enough for them'.

AIMS: To explore how people who use fentanyl and health-care providers engaged in and responded to overdose risk communication interactions, and how these engagements and responses might vary by age. DESIGN: A single-site qualitative in-depth interview study. SETTING: Boston, MA, United States. PARTICIPANTS: The sample included 21 people (10 women, 11 men) who were either 18-25 or 35+, English-speaking, and reported illicit fentanyl use in the last year and 10 health-care providers who worked directly with people who use fentanyl (PWUF) in clinical and community settings. MEASUREMENTS: Open-ended, flexible interview questions guided by a risk communication framework were used in all interviews. Codes used for thematic analysis included deductive codes related to the risk communication framework and inductive, emergent codes from interview content. FINDINGS: We identified potential age-based differences in perceptions of fentanyl overdose, including that younger participants appeared to display more perceptions of an immunity to fentanyl's lethality, while older people seemed to express a stronger aversion to fentanyl due to its heightened risk of fatal overdose, shorter effects and potential for long-term health consequences. Providers perceived greater challenges relaying risk information to young PWUF and believed them to be less open to risk communication. Compassionate harm reduction communication was preferred by all participants and perceived to be delivered most effectively by community health workers and peers. PWUF and providers identified structural barriers that limited compassionate harm reduction, including misalignment of available treatment with preferred options and clinical structures that impeded the delivery of risk communication messages. CONCLUSIONS: Among people who engage in illicit fentanyl use, fentanyl-related risk communication experiences and preferences may vary by age, but some foundational elements including compassionate, trust-building approaches seem to be preferred across the age spectrum. Structural barriers in the clinical setting such as provider-prescribing power and infrequent encounters may impede the providers' ability to provide compassionate harm reduction communication.

Evaluation of existing patient educational materials and development of a brochure for women with dense breasts.

OBJECTIVES: In this pilot study, we developed and assessed acceptability of a brochure for women with dense breasts. MATERIAL AND METHODS: We measured Flesch-Kincaid Readability of 22 existing breast density educational materials. We then developed a brochure and tested it in two populations of women: 44 safety net hospital patients and 13 Breast Cancer Surveillance Consortium stakeholders. RESULTS: Average grade score of existing materials was 10.0 (range: 5.5-12.7). Our brochure had a grade score of 5.9, and patients reported it was easy to understand. CONCLUSION: Our plain language brochure could improve patient understanding following mandatory dense breast notification.

Acceptability of an Interactive Computer-Animated Agent to Promote Patient-Provider Communication About Breast Density: a Mixed Method Pilot Study.

BACKGROUND: Half of women undergoing mammography have dense breasts. Mandatory dense breast notification and educational materials have been shown to confuse women, rather than empower them. OBJECTIVE: This study used a mixed method, multi-stakeholder approach to assess acceptability of an interactive, computer-animated agent that provided breast density information to women and changes in knowledge, satisfaction, and informational needs. DESIGN: A pre-post survey and qualitative focus groups assessed the acceptability of the computer-animated agent among women. An anonymous, online survey measuring acceptability was delivered to a multi-stakeholder group. PARTICIPANTS: English-speaking, mammography-eligible women ages 40-74 were invited and 44 women participated in one of nine focus groups. In addition, 14 stakeholders representing primary care, radiology, patient advocates, public health practitioners, and researchers completed the online survey. INTERVENTIONS: A prototype of a computer-animated agent was delivered to women in a group setting; stakeholders viewed the prototype independently. MAIN MEASURES: Data collected included open-ended qualitative questions that guided discussion about the content and form of the computer-animated agent. Structured surveys included domains related to knowledge, acceptability, and satisfaction. Stakeholder acceptability was measured with a series of statements about aspects of the intervention and delivery approach and are reported as the proportion of respondents who endorsed each statement. KEY RESULTS: Six of 12 knowledge items demonstrated improvement post-intervention, satisfaction with the agent was high (81%), but the number of unanswered questions did not improve (67% vs. 54%, p = 0.37). Understanding of the distinction between connective and fatty tissue in the breast did not increase (30% vs. 26%, p = 0.48). Results of the multi-stakeholder survey suggest broad acceptability of the approach and agent. CONCLUSIONS: Findings highlight the benefits of a brief interactive educational exposure as well as misperceptions that persisted. Results demonstrate the need for an evidence-based, accessible intervention that is easy to understand for patients.

Discussions of Potential Mammography Benefits and Harms among Patients with Limited Health Literacy and Providers: "Oh, There are Harms?"

Starting breast cancer screening at age 40 versus 50 may increase potential harms frequency with a small mortality benefit. Younger women's screening decisions, therefore, may be complex. Shared decision-making (SDM) is recommended for women under 50 and may support women under 55 for whom guidelines vary. How women with limited health literacy (LHL) approach breast cancer screening decision-making is less understood, and most SDM tools are not designed with their input. This phenomenological study sought to characterize mammography counseling experiences among women with LHL and primary care providers (PCPs). Women ages 40-54 with LHL who had no history of breast cancer or mammogram within 9 months were approached before a primary care visit at a safety-net hospital. PCPs at this site were invited to participate. Qualitative interviews explored mammography counseling experiences. Patients also reviewed sample information materials. A constant comparison technique generated four themes salient to 25 patients and 20 PCPs: addressing family history versus comprehensive risk assessment; potential mammography harms discussions; information delivery preferences; and integrating pre-visit information tools. Findings suggest that current counseling techniques may not be responsive to patient-identified needs. Opportunities exist to improve how mammography information is shared and increase accessibility across the health literacy spectrum.