Developing a community-led rare disease ELSI research agenda.

BACKGROUND: Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease. METHODS: This two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease. We established "Rare Voices" (RV), a 22-member stakeholder group of patients, parents, clinicians and researchers. Following capacity-building trainings, RV designed and conducted listening sessions with teen patients and parents of children with rare diseases to explore challenges, positive experiences, and ethical concerns. Listening session findings were synthesized and contextualized into research topics, which RV members further refined and prioritized. We used established measures to assess RV member engagement and satisfaction. RESULTS: From 14 listening sessions with parents (n = 52) and teen patients (n = 13), RV identified eight core research topics as most important for future rare disease research: coordinating care, communication, accessing resources and care, impact on family unit, community and support in society, mental health and identity, ethical aspects of care, and uncertainty. RV members were highly engaged throughout the two-year project and reported high levels of satisfaction with the experience and research agenda. CONCLUSIONS: Through capacity-building and authentic engagement, this project resulted in a community-led rare disease research agenda to guide future rare disease ELSI research that aligns with patients' and families' priorities. An environment of equal partnership and respect created a space for mutual learning where community members were empowered to shape the research agenda based on their collective experiences. The agenda recognizes the shared psychosocial and healthcare experiences of rare disease and offers practical areas of research to address patient and family needs.

Assessing COVID-related concerns and their impact on antenatal and delivery care among pregnant women living with HIV in Kenya: a brief report.

BACKGROUND: Some studies indicate that pregnant Kenyan women were concerned about Coronavirus disease 2019 (COVID-19) exposure during maternity care. We assessed concern regarding COVID-19 exposure and any impact on antenatal care (ANC) enrollment and/or hospital delivery among pregnant women living with human immunodeficiency virus (HIV) in Kenya. METHODS: Data were collected from 1,478 pregnant women living with HIV enrolled in prevention of mother to child transmission of HIV (PMTCT) care at 12 Kenyan hospitals from October 2020 to July 2022. Surveys were conducted when women first presented for PMTCT services at the study hospital and asked demographic questions as well as items related to concerns about COVID-19. A 5-point Likert scale (strongly disagree to strongly agree) assessed concerns about COVID-19 exposure and travel challenges. Gestational age at PMTCT enrollment, number of ANC appointments attended, and delivery location were compared among women who expressed COVID-19 concerns and those who did not. RESULTS: Few women reported delaying antenatal care (4.7%), attending fewer antenatal care appointments (5.0%), or having concerns about a hospital-based delivery (7.7%) because of COVID-19. More (25.8%) reported travel challenges because of COVID-19. There were no significant differences in gestational age at enrollment, number of ANC appointments, or rates of hospital-based delivery between women with concerns about COVID-19 and those without, CONCLUSION: Few pregnant women living with HIV expressed concerns about COVID-19 exposure in the context of routine ANC or delivery care. Women with and without concerns had similar care seeking behaviors. The recognized importance of routine ANC care and facility-based deliveries may have contributed to these positive pregnancy indicators, even among women who worried about COVID-19 exposure. TRIAL REGISTRATION: www. CLINICALTRIALS: gov identifier NCT04571684.

Audience Response to COVID Monologues: Research-Based Theater on the Societal Impact of COVID-19.

PURPOSE: Research-based theater uses drama to communicate research findings to audiences beyond those that typically read peer-reviewed journals. We applied research-based theater to translate qualitative research findings on the impact of the COVID-19 pandemic on different segments of U.S. society. APPROACH: Theater artists and public health researchers collaborated to create a collection of eight monologues from systematically sourced, peer-reviewed publications. Following three virtual performances in Spring, 2021, audience members were invited to complete a survey. SETTING/PARTICIPANTS: Audience survey respondents (n = 120) were mostly U.S.-based and were diverse in terms of age, race/ethnicity, gender, profession, and experience attending theater. METHOD: We summarized closed-ended responses and explored patterns by demographic characteristics. We synthesized themes of open-ended responses with inductive coding. RESULTS: Audience members somewhat/strongly agreed that COVID Monologues increased their knowledge (79.4%), represented the reality of the U.S. COVID-19 epidemic (95.7%), and offered new perspectives on what people had been experiencing (87.5%). Most also agreed research-based theater is an effective means of understanding health research (93.5%) and can promote community resilience in times of public health crisis (83.2%). Mann-Whitney U tests suggested less positive reactions from demographics that were not well-represented in monologue characters (cisgender men, Hispanics). Qualitative comments suggested audience members valued monologues that offered self-reflection and validation of their own COVID-19 experiences through relatable characters as well as those that offered insight into the experiences of people different from themselves. CONCLUSION: This work adds to evidence that research-based theater can help build knowledge and emotional insight around a public health issue. As these elements are foundational to pro-social, preventative health behaviors, research-based theater may have a useful role in promoting collective response to public health crises like COVID-19. Our method of systematically-sourcing research for theater-based dissemination could be extended to target more specific audiences with actionable behaviors.

Over forty percent of women living with HIV report interruption in antiretroviral therapy during intrapartum and early postpartum inpatient stay: findings from five hospitals in Ghana.

Antiretroviral therapy (ART) adherence during and after pregnancy is essential to reduce perinatal transmission of HIV. However, little is known about adherence during the intrapartum and early postpartum inpatient hospital stay. Using secondary data from a hospital-based cohort study focused on the relationship between birthweight and engagement in HIV care, we examined the magnitude of, reasons for, and factors associated with incomplete intrapartum and early postpartum ART adherence among adult women (18 years or older) living with HIV who delivered within the previous two weeks at one of five hospitals in Accra, Ghana. Of the 142 enrolled participants who had complete adherence data and reported being on ART at the time of hospital admission, 43% (61/142) reported missing at least one ART dose during labor, delivery, and postpartum, including almost 20% (28/142) missing 2 or more consecutive doses. Women who reported frequently missing ART doses during pregnancy had higher odds of reporting missed doses during their intrapartum and postpartum hospital stays. Among those with inpatient ART interruption, the most frequently cited reasons were: forgetting medication at home (42%) and challenges of being in or recovering from labor (29%). Maternal perception of infant health at birth, hospital level of care, and frequency of missing HIV medications during pregnancy were associated with incomplete ART adherence during the intrapartum and early postpartum inpatient stay. An enabling clinical environment to facilitate access to ART during inpatient stays may have positive implications for ART adherence.

Piloting Gain and Loss-Framed PrEP and Childbearing Messaging to Promote HIV Testing in Uganda: Perspectives from Couples and Providers.

Fears of relationship dissolution and the inability to bear healthy children remain barriers to HIV testing in sub-Saharan Africa. Pre-exposure prophylaxis (PrEP) carries both clinical and symbolic benefits that counter these fears. We conducted a pilot messaging intervention through Uganda's assisted partner notification (APN) program, where providers assist HIV-positive index clients in notifying sexual partners and encourage testing. We randomized providers at three clinics to implement phone scripts over two months with (1) gain-framed or (2) loss-framed information about PrEP and childbearing; or (3) usual care. In 23 in-depth interviews with providers, index clients, and partners, five major themes emerged on intervention acceptability and feasibility: (1) value of PrEP and childbearing messaging in APN; (2) value of this messaging coming earlier in APN; (3) overall preference for gain-framed messages; (4) need to tailor timing of messaging; and (5) need for messaging outside of APN. Register data (109 index clients, 145 partners) indicated most index clients (95%) wanted their potential conception partners informed about PrEP. Preliminary trends suggest the intervention sites outperformed usual care in testing rates among potential conception partners. Messaging that highlights PrEP and safe childbearing may be a promising new communication strategy to promote HIV testing.

Cost-effectiveness of Lifestyle Africa: an adaptation of the diabetes prevention programme for delivery by community health workers in urban South Africa.

BACKGROUND: Lifestyle Africa is an adapted version of the Diabetes Prevention Program designed for delivery by community health workers to socioeconomically disadvantaged populations in low- and middle-income countries (LMICs). Results from the Lifestyle Africa trial conducted in an under-resourced community in South Africa indicated that the programme had a significant effect on reducing haemoglobin A1c (HbA1c). OBJECTIVE: To estimate the cost of implementation and the cost-effectiveness (in cost per point reduction in HbA1c) of the Lifestyle Africa programme to inform decision-makers of the resources required and the value of this intervention. METHODS: Interviews were held with project administrators to identify the activities and resources required to implement the intervention. A direct-measure micro-costing approach was used to determine the number of units and unit cost for each resource. The incremental cost per one point improvement in HbA1c was calculated. RESULTS: The intervention equated to 71 United States dollars (USD) in implementation costs per participant and a 0.26 improvement in HbA1c per participant. CONCLUSIONS: Lifestyle Africa reduced HbA1c for relatively little cost and holds promise for addressing chronic disease in LMIC. Decision-makers should consider the comparative clinical effectiveness and cost-effectiveness of this intervention when making resource allocation decisions. TRIAL REGISTRATION: Trial registration is at ClinicalTrials.gov (NCT03342274).

Sexual behaviors, contraception use and barriers among adolescents and young adults in rural Haiti.

BACKGROUND: Adolescents and young adults (AYAs) in Haiti experience a high unintended pregnancy rate, in part due to unmet contraception needs. Little is known about AYA opinions of and experiences with contraception that may explain remaining gaps in coverage. We aimed to describe barriers and facilitators to contraception use among AYAs in Haiti. METHODS: We conducted a cross-sectional survey and semi-structured qualitative interviews with a convenience sample of AYA females aged 14-24 in two rural communities in Haiti. The survey and semi-structured interviews assessed demographics, sexual health and pregnancy prevention behaviors and explored contraception opinions and experiences according to Theory of Planned Behavior constructs: attitudes, subjective norms, and perceived behavioral control. We used descriptive statistics to report means and responses to Likert scale and multiple-choice questions. Guided by content analysis, we analyzed interview transcripts through inductive coding and team debriefing. RESULTS: Among 200 survey respondents, 94% reported any past vaginal sexual activity, and 43% reported ever being pregnant. A large majority were trying to avoid pregnancy (75%). At last sexual activity, 127 (64%) reported use of any contraceptive method; Among them, condoms were the most common method (80%). Among those with previous condom use, most reported use less than half the time (55%). AYAs were concerned about parental approval of birth control use (42%) and that their friends might think they are looking for sex (29%). About one-third felt uncomfortable going to a clinic to ask for birth control. In interviews, AYAs desired pregnancy prevention but frequently noted concerns about privacy and parental, community and healthcare provider judgement for seeking care for reproductive health needs. AYAs also noted a lack of contraception knowledge, evident by frequent misconceptions and associated fears. CONCLUSION: Among AYAs in rural Haiti, a large majority were sexually active and desire pregnancy avoidance, but few were using effective contraception due to numerous concerns, including privacy and fear of judgement. Future efforts should address these identified concerns to prevent unintended pregnancy and improve maternal and reproductive health outcomes in this population.

Contraception use among individuals with substance use disorder increases tenfold with patient-centered, mobile services: a quasi-experimental study.

BACKGROUND: Individuals with substance use disorders (SUD) have disproportionately high rates of unintended pregnancy. Reducing harm associated with this risk and its biopsychosocial consequences requires evidence-based, non-coercive interventions that ensure access to contraception for individuals who choose to prevent pregnancy. We examined feasibility and impact of SexHealth Mobile, a mobile unit-based intervention that aimed to increase access to patient-centered contraceptive care for individuals in SUD recovery programs. METHODS: We conducted a quasi-experimental study (enhanced usual care [EUC] followed by intervention) at three recovery centers with participants (n = 98) at risk for unintended pregnancy. EUC participants were offered printed information on community locations where they could access contraception care. SexHealth Mobile participants were offered same-day, onsite clinical consultation on a medical mobile unit and contraception if desired. The primary outcome was use of contraception (hormonal or intrauterine device) at one-month post-enrollment. Secondary outcomes were at two-weeks and three-months. Confidence in preventing unintended pregnancy, reasons for non-use of contraception at follow-up, and intervention feasibility were also assessed. RESULTS: Participants (median age = 31, range 19-40) enrolled in the intervention period were almost 10 times more likely to be using contraception at one-month (51.5%) versus the those enrolled in the EUC period (5.4%) (unadjusted relative risk [URR] = 9.3 [95%CI: 2.3-37.1]; adjusted relative risk [ARR] = 9.8 [95%CI: 2.4-39.2]). Intervention participants were also more likely to be using contraception at 2-weeks (38.7% vs. 2.6%; URR = 14.3 [95%CI: 2.0-104.1]) and three-months (40.9% vs. 13.9%; URR = 2.9 [95% CI: 1.1-7.4]). EUC participants reported more barriers (cost, time) and less confidence in preventing unintended pregnancies. Mixed-methods feasibility data indicated high acceptability and feasible integration into recovery settings. CONCLUSIONS: Mobile contraceptive care based on principles of reproductive justice and harm reduction reduces access barriers, is feasible to implement in SUD recovery settings, and increases contraception use. Expanding interventions like SexHealth Mobile may help reduce harm from unintended pregnancies among individuals in SUD recovery. Trial Registration NCT04227145.

Menstrual health among adolescents and young adults in rural Haiti.

BACKGROUND: Adolescent and young adult (AYA) females in low- and middle-income countries often face disparities in menstrual health (MH). Poor MH and lack of sexual and reproductive health education leads to school absenteeism, increasing risk for adverse psychosocial and educational outcomes. Further, disasters (e.g., earthquakes) are linked with unsafe living environments and sanitation facilities for women. We sought to describe MH perspectives and practices among AYAs in rural Haiti. METHODS: We conducted a cross-sectional survey in two rural communities in Haiti. AYA females aged 14-24 years completed questions on demographics, the Menstrual Practice Needs Scale (36 items; MPNS-36) and the Menstrual Practices Questionnaire (4 items). We performed descriptive statistics and Chi square or Fisher's Exact tests to compare responses among sub-groups. RESULTS: Among 200 respondents, the median age was 20 years (IQR 17-22). 51% (95% CI 44%, 58%; 102/200) were currently attending school at least 3 days/week and 97% (94%, 99%; 193/200) were not married. According to the MPNS-36, 68% (62%, 74%; 136/200) of participants had unmet MH needs. Seventy-one (77%) reused some of their menstrual materials during their last menstruation. During their last menstruation, 44% (37%, 50%; 87/200) reported they often or always skipped school because they had their menses, and 31% (25%, 37%; 62/200) sometimes skipped. Many felt always or often worried that someone or something would harm them while they were changing their menstrual materials at home and at school. CONCLUSIONS: Among AYAs in rural Haiti, three-quarters reported menses-related school absenteeism and two-thirds had unmet MH needs. AYA females often lacked a safe environment to change their menstrual materials. Given recent disasters in Haiti, (August 2021 earthquake), safe environments for MH are critically needed to offset risk for poor psychosocial and health outcomes. Future efforts to improve MH among AYAs in Haiti are needed to ensure access to MH resources and school attendance.

Adolescents and young adult (AYA) females in low- and middle-income countries can often lack adequate access to materials to manage their menstruation, in addition to safe spaces to change those materials. This lack of access, in addition to low levels of reproductive health education, can cause AYAs to miss school, leading to increased risk of worse psychosocial and educational outcomes. In addition, disasters (e.g., earthquakes) are linked with unsafe living environments and sanitation facilities for women. We sought to describe AYA menstrual practices and perspectives on menstrual hygiene in rural Haiti. In two rural communities in Haiti, AYA females aged 14­24 years answered questions on their demographics and menstrual hygiene practices and environments. Two-thirds of AYAs had unmet menstrual hygiene needs and three-quarters reported they skipped school (with any frequency) due to their menses. Further, more than half worried that something or someone would harm them while they were changing their menstrual materials at home and at school. AYA females often lacked a safe environment to change their menstrual materials. Given recent disasters and political unrest in Haiti, (August 2021 earthquake), it is important to improve menstrual hygiene in these LMICs to ensure safe enviornments for managing menstruation and school attendance and ultimately improve psychosocial and health outcomes.

Let's Talk About Antibiotics: a randomised trial of two interventions to reduce antibiotic misuse.

BACKGROUND: Children with acute respiratory tract infections (ARTIs) receive ≈11.4 million unnecessary antibiotic prescriptions annually. A noted contributor is inadequate parent-clinician communication, however, efforts to reduce overprescribing have only indirectly targeted communication or been impractical. OBJECTIVES: Compare two feasible (higher vs lower intensity) interventions for enhancing parent-clinician communication on the rate of inappropriate antibiotic prescribing. DESIGN: Multisite, parallel group, cluster randomised comparative effectiveness trial. Data collected between March 2017 and March 2019. SETTING: Academic and private practice outpatient clinics. PARTICIPANTS: Clinicians (n=41, 85% of eligible approached) and 1599 parent-child dyads (ages 1-5 years with ARTI symptoms, 71% of eligible approached). INTERVENTIONS: All clinicians received 20 min ARTI diagnosis and treatment education. Higher intensity clinicians received an additional 50 min communication skills training. All parents viewed a 90 second antibiotic education video. MAIN OUTCOMES AND MEASURES: Inappropriate antibiotic treatment was assessed via blinded medical record review by study clinicians and a priori defined as prescriptions for the wrong diagnosis or use of the wrong agent. Secondary outcomes were revisits, adverse drug reactions (both assessed 2 weeks after the visit) and parent ratings of provider communication, shared decision-making and visit satisfaction (assessed at end of the visit on Likert-type scales). RESULTS: Most clinicians completed the study (n=38, 93%), were doctors (n=25, 66%), female (n=30, 78%) and averaged 8 years in practice. All parent-child dyad provided data for the main outcome (n=855 (54%) male, n=1043 (53%) <2 years). Inappropriate antibiotic prescribing was similar among patients who consulted with a higher intensity (54/696, 7.8%) versus a lower intensity (85/904, 9.4%) clinician. A generalised linear mixed effect regression model (adjusted for the two-stage nested design, clinician type, clinic setting and clinician experience) revealed that the odds of receiving inappropriate antibiotic treatment did not significantly vary by group (AOR 0.99, 95% CI: 0.52 to 1.89, p=0.98). Secondary outcomes of revisits and adverse reactions did not vary between arms, and parent ratings of satisfaction with quality of parent-provider communication (5/5), shared decision making (9/10) and visit satisfaction (5/5) were similarly high in both arms. CONCLUSIONS AND RELEVANCE: Rate of inappropriate prescribing was low in both arms. Clinician education coupled with parent education may be sufficient to yield low inappropriate antibiotic prescribing rates. The absence of a significant difference between groups indicates that communication principles previously thought to drive inappropriate prescribing may need to be re-examined or may not have as much of an impact in practices where prescribing has improved in recent years. TRIAL REGISTRATION NUMBER: NCT03037112.

Evaluation of an adapted version of the Diabetes Prevention Program for low- and middle-income countries: A cluster randomized trial to evaluate "Lifestyle Africa" in South Africa.

BACKGROUND: Low- and middle-income countries (LMICs) are experiencing major increases in diabetes and cardiovascular conditions linked to overweight and obesity. Lifestyle interventions such as the United States National Diabetes Prevention Program (DPP) developed in high-income countries require adaptation and cultural tailoring for LMICs. The objective of this study was to evaluate the efficacy of "Lifestyle Africa," an adapted version of the DPP tailored for an underresourced community in South Africa compared to usual care. METHODS AND FINDINGS: Participants were residents of a predominantly Xhosa-speaking urban township of Cape Town, South Africa characterized by high rates of poverty. Participants with body mass index (BMI) ≥ 25 kg/m2 who were members of existing social support groups or "clubs" receiving health services from local nongovernmental organizations (NGOs) were enrolled in a cluster randomized controlled trial that compared Lifestyle Africa (the intervention condition) to usual care (the control condition). The Lifestyle Africa intervention consisted of 17 video-based group sessions delivered by trained community health workers (CHWs). Clusters were randomized using a numbered list of the CHWs and their assigned clubs based on a computer-based random allocation scheme. CHWs, participants, and research team members could not be blinded to condition. Percentage weight loss (primary outcome), hemoglobin A1c (HbA1c), blood pressure, triglycerides, and low-density lipoprotein (LDL) cholesterol were assessed 7 to 9 months after enrollment. An individual-level intention-to-treat analysis was conducted adjusting for clustering within clubs and baseline values. Trial registration is at ClinicalTrials.gov (NCT03342274). Between February 2018 and May 2019, 782 individuals were screened, and 494 were enrolled. Participants were predominantly retired (57% were receiving a pension) and female (89%) with a mean age of 68 years. Participants from 28 clusters were allocated to Lifestyle Africa (15, n = 240) or usual care (13, n = 254). Fidelity assessments indicated that the intervention was generally delivered as intended. The modal number of sessions held across all clubs was 17, and the mean attendance of participants across all sessions was 61%. Outcome assessment was completed by 215 (90%) intervention and 223 (88%) control participants. Intent-to-treat analyses utilizing multilevel modeling included all randomized participants. Mean weight change (primary outcome) was -0.61% (95% confidence interval (CI) = -1.22, -0.01) in Lifestyle Africa and -0.44% (95% CI = -1.06, 0.18) in control with no significant difference (group difference = -0.17%; 95% CI = -1.04, 0.71; p = 0.71). However, HbA1c was significantly lower at follow-up in Lifestyle Africa compared to the usual care group (mean difference = -0.24, 95% CI = -0.39, -0.09, p = 0.001). None of the other secondary outcomes differed at follow-up: systolic blood pressure (group difference = -1.36; 95% CI = -6.92, 4.21; p = 0.63), diastolic blood pressure (group difference = -0.39; 95% CI = -3.25, 2.30; p = 0.78), LDL (group difference = -0.07; 95% CI = -0.19, 0.05; p = 0.26), triglycerides (group difference = -0.02; 95% CI = -0.20, 0.16; p = 0.80). There were no unanticipated problems and serious adverse events were rare, unrelated to the intervention, and similar across groups (11 in Lifestyle Africa versus 13 in usual care). Limitations of the study include the lack of a rigorous dietary intake measure and the high representation of older women. CONCLUSIONS: In this study, we found that Lifestyle Africa was feasible for CHWs to deliver and, although it had no effect on the primary outcome of weight loss or secondary outcomes of blood pressure or triglycerides, it had an apparent small significant effect on HbA1c. The study demonstrates the potential feasibility of CHWs to deliver a program without expert involvement by utilizing video-based sessions. The intervention may hold promise for addressing cardiovascular disease (CVD) and diabetes at scale in LMICs. TRIAL REGISTRATION: ClinicalTrials.gov NCT03342274.

Untapped Potential for Safer Conception Messaging to Transform PrEP Rollout and Promote Service Engagement Among Serodiscordant Couples.

Uptake of pre-exposure prophylaxis (PrEP) fell short of targets for Sub-Saharan Africa's initial rollout, revealing the need for more effective promotion strategies. In Uganda, we explored potential benefits and challenges of integrating safer conception messaging to promote PrEP among serodiscordant couples. In-depth interviews were conducted with clients and personnel at three clinics and analyzed thematically. Participants (n = 58) valued PrEP as a safer conception method (SCM) but described lack of integration of safer conception and PrEP services as well as inconsistent practices in prescribing PrEP to couples pursuing conception. Participants reported that the wider population remains largely unaware of PrEP and SCM or harbors misconceptions that PrEP is primarily for highly stigmatized groups like sex workers. Participants further described how heterosexual couples can still be reluctant to test for HIV, unaware of tools like PrEP and SCM that would allow them to continue their relationship and/or pursuit of childbearing. Overall, findings suggest that integrating PrEP and SCM in messaging and services targeting serodiscordant couples holds untapped benefits throughout the HIV prevention cascade.

Designing an Adaptive Adolescent Physical Activity and Nutrition Intervention for COVID-19-Related Health Challenges: Formative Research Study.

BACKGROUND: With rates of childhood obesity continually increasing, effective physical activity and nutrition interventions are needed. Formative research is used to tailor interventions to different cultural and geographic contexts and can be vital in adapting intervention strategies in the face of significant disruptive circumstances (like COVID-19). OBJECTIVE: We conducted formative research via in-person and web-based focus groups among middle schoolers and parents to better understand the facilitators and barriers to physical activity and fruit and vegetable consumption and to inform the design of a large intervention for a low-income, urban setting in the US Midwest. METHODS: We conducted 2 phases of qualitative focus groups with parents (n=20) and 6th-9th grade middle schoolers (n=23). Phase 1 was conducted prior to the COVID-19 pandemic in late 2019, and phase 2 was conducted during the COVID-19 pandemic in the summer of 2020. Focus groups were transcribed and thematically coded using the Dedoose software. RESULTS: The main facilitators of physical activity prior to the pandemic included the opportunity to have fun, peer influence, competition (for some), and incentives, while the main barriers to physical activity were time constraints and social discomfort. The main facilitators of eating fruits and vegetables included parental influence, preparation technique, and convenience, while barriers included dislike of vegetables, time constraints, and preparation or freshness. During the pandemic, facilitators of physical activity remained the same, while additional barriers to physical activity such as lack of motivation and limited time spent outside of the home were reported. For fruit and vegetable consumption, both facilitators and barriers remained the same for both time periods. Additionally, for some participants, the pandemic offered an opportunity to offer more fruits and vegetables to middle schoolers throughout the day. CONCLUSIONS: Some themes identified were common to those reported in previous studies, such as peer influence on physical activity and parental influence on fruit and vegetable consumption. Novel themes such as lack of motivation to be active and limited time outside the home helped improve intervention adaptation, specifically during the COVID-19 pandemic. The continuity of formative research after a major unexpected change in the intervention context can be essential in targeting areas of an intervention that can be retained and those that need to be adjusted.

Long-acting reversible contraceptives (LARCs) as harm reduction: a qualitative study exploring views of women with histories of opioid misuse.

BACKGROUND: The sharp rise in opioid use disorder (OUD) among women coupled with disproportionally high rates of unintended pregnancy have led to a four-fold increase in the number of pregnant women with OUD in the United States over the past decade. Supporting intentional family planning can have multiple health benefits and reduce harms related to OUD but requires a comprehensive understanding of women's perspectives of preventing unintended pregnancies. The purpose of this study was to comprehensively evaluate the knowledge, attitudes and experiences as they relate to seeking contraception, particularly LARCs, among women with active or recovered opioid misuse. METHODS: In-depth interviews and focus group discussions with 36 women with current or past opioid misuse were recorded and transcribed. Transcripts were coded by ≥ 2 investigators. Themes related to contraceptive care seeking were identified and contextualized within the Health Belief Model. RESULTS: Our analysis revealed seven interwoven themes that describe individual level factors associated with contraceptive care seeking in women with current or past opioid misuse: relationship with drugs, reproductive experiences and self-perceptions, sexual partner dynamics, access, awareness of options, healthcare attitudes/experiences, and perceptions of contraception efficacy/ side effects. Overall, perceived susceptibility and severity to unintended pregnancy varied, but most women perceived high benefits of contraception, particularly LARC. However, perceived barriers were too high for most to obtain desired contraception to support family planning intentions. CONCLUSIONS: The individual-level factors identified should inform the design of integrated services to promote patient-centered contraceptive counseling as a form of harm reduction. Interventions should reduce barriers to contraceptive access, particularly LARCs, and establish counseling strategies that use open, non-judgmental communication, acknowledge the continuum of reproductive needs, explore perceived susceptibility to pregnancy, and utilize peer educators.

Challenges in genetic testing: clinician variant interpretation processes and the impact on clinical care.

PURPOSE: Efforts have been made to standardize laboratory variant interpretation, but clinicians are ultimately tasked with clinical correlation and application of genetic test results in patient care. This study aimed to explore processes clinicians utilize when reviewing and returning genetic test results, and how they impact patient care. METHODS: Medical geneticists, genetic counselors, and nongenetics clinicians from two Midwestern states completed surveys (n = 98) and in-depth interviews (n = 29) on practices of reviewing and returning genetic test results. Retrospective chart review (n = 130) examined discordant interpretations and the impact on care. RESULTS: Participants reported variable behaviors in both reviewing and returning results based on factors such as confidence, view of role, practice setting, and relationship with the lab. Providers did not report requesting changes to variant classifications from laboratories, but indicated relaying conflicting classifications to patients in some cases. Chart reviews revealed medically impactful differences in interpretation between laboratories and clinicians in 18 (13.8%) records. CONCLUSION: Clinician practices for reviewing and integrating genetic test results into patient care vary within and between specialties and impact patient care. Strategies to better incorporate both laboratory and clinician expertise into interpretation of genetic results could result in improved care across providers and settings.

Recovering from substance use disorders during the early months of the COVID-19 pandemic: A mixed-methods longitudinal study of women in Kansas City.

AIMS: During the early months of the U.S. COVID-19 outbreak, women suffered disproportionate burdens of pandemic-related psychological and economic distress. We aimed to describe the experiences of women in substance use disorder (SUD) recovery programs by (1) exploring the pandemic's impact on their lives, sobriety, and recovery capital and (2) tracking COVID-19 perceptions and preventative behaviors. METHODS: We conducted monthly semistructured interviews with women in residential and outpatient SUD recovery programs in Kansas City in April, May, and June 2020. Participants described the pandemic's impact on their life and sobriety and completed survey items on factors related to COVID-19 preventative behaviors. We interpreted qualitative themes longitudinally alongside quantitative data. RESULTS: In 64 interviews, participants (n = 24) described reduced access to recovery capital, or resources that support sobriety, such as social relationships, housing, employment, and health care. Most experienced negative impacts on their lives and feelings of stability in March and April but maintained sobriety. Four women described relapse, all attributed to pandemic stressors. Participants described relief related to societal re-opening in May and June, and increased engagement with their communities, despite rising infection rates. CONCLUSIONS: For women recovering from SUDs during COVID-19, securing recovery capital often meant assuming greater COVID-19 risk. As substance use appeared to have increased during the pandemic and COVID-19 transmission continues, public health planning must prioritize adequate and safe access to recovery capital and timely distribution of vaccines to people struggling with SUDs.

Reproductive intentions and corresponding use of safer conception methods and contraception among Ugandan HIV clients in serodiscordant relationships.

CONTEXT: Among people living with HIV in Uganda, desires to have a child and unplanned pregnancies are both common, while utilization of safer conception methods (SCM) and modern contraceptives are low. METHODS: Three hundred eighty-nine HIV clients who reported considering childbearing with their uninfected partner enrolled in a safer conception counseling intervention trial in Uganda. Multiple regression analysis and baseline data were used to examine correlates of reproductive intentions and behaviors, including use of safer conception methods and contraception. RESULTS: Most (n = 313; 80.5%) reported that both they and their partner wanted to have a child now, which was associated with being married, in a longer relationship, not having a child with partner, greater SCM knowledge, lower internalized childbearing stigma, and higher perceived community stigma of childbearing. However, just 117 reported trying to conceive in the prior 6 months, which was associated with being female, not having a child with their partner, less decision-making control within the relationship, and greater perceived cultural acceptability of SCM. Among those who had tried to conceive in the past 6 months, 14 (11.9%) used SCM, which was associated with greater control in decision making. Of the 268 who were not trying to conceive, 69 (25.7%) were using a modern contraceptive, which was associated with being in a shorter relationship, less control over decision-making, more positive attitudes towards contraception and lower depression. CONCLUSION: Methods to promote reproductive goals are underused by HIV serodiscordant couples, and relationships characteristics and childbearing-related stigma appear to be most influential and thus targets for intervention. TRIAL REGISTRATION: Clinicaltrials.gov, NCT03167879 ; date registered May 23, 2017.

Stigma toward small babies and their mothers in Ghana: A study of the experiences of postpartum women living with HIV.

Infants born to HIV-infected mothers are more likely to be low birthweight (LBW) than other infants, a condition that is stigmatized in many settings worldwide, including sub-Saharan Africa. Few studies have characterized the social-cultural context and response to LBW stigma among mothers in sub-Saharan Africa or explored the views of women living with HIV (WLHIV) on the causes of LBW. We purposively sampled thirty postpartum WLHIV, who had given birth to either LBW or normal birthweight infants, from two tertiary hospitals in Accra, Ghana. Using semi-structured interviews, we explored women's understanding of the etiology of LBW, and their experiences of caring for a LBW infant. Interviews were analyzed using interpretive phenomenology. Mothers assessed their babies' smallness based on the baby's size, not hospital-recorded birthweight. Several participants explained that severe depression and a loss of appetite, linked to stigma following an HIV diagnosis during pregnancy, contributed to infants being born LBW. Women with small babies also experienced stigma due to the newborns' "undesirable" physical features and other people's unfamiliarity with their size. Consequently, mothers experienced blame, reluctance showing the baby to others, and social gossip. As a result of this stigma, women reported self-isolation and depressive symptoms. These experiences were layered on the burden of healthcare and infant feeding costs for LBW infants. LBW stigma appeared to attenuate with increased infant weight gain. A few of the women also did not breastfeed because they thought their baby's small size indicated pediatric HIV infection. Among WLHIV in urban areas in Ghana, mother and LBW infants may experience LBW-related stigma. A multi-component intervention that includes reducing LBW incidence, treating antenatal depression, providing psychosocial support after a LBW birth, and increasing LBW infants' weight gain are critically needed.

Beyond clinical food prescriptions and mobile markets: parent views on the role of a healthcare institution in increasing healthy eating in food insecure families.

BACKGROUND: Children in food-insecure families face increased barriers to meeting recommendations for fruit and vegetable consumption. Hospitals and pediatric healthcare institutions have attempted to alleviate food-insecurity through various internal programs like food prescriptions, yet little evidence for these programs exist. Consistent with a patient-centered perspective, we sought to develop a comprehensive understanding of barriers to fruit and vegetable consumption and a parent-driven agenda for healthcare system action. METHODS: We conducted six qualitative focus group discussions (four in English, two in Spanish) with 29 parents and caregivers of patients who had screened positive for food-insecurity during visits to a large pediatric healthcare system in a midwestern U.S. city. Our iterative analysis process consisted of audio-recording, transcribing and coding discussions, aiming to produce a) a conceptual framework of barriers to fruit and vegetable consumption and b) a synthesis of participant programmatic suggestions for their healthcare system. RESULTS: Participants were 90% female, 38% Black/African American and 41% Hispanic/Latino. Barriers to fruit and vegetable consumption in their families fell into three intersecting themes: affordability, accessibility and desirability. Participant-generated intervention recommendations were multilevel, suggesting healthcare systems focus not only on clinic and community-based action, but also advocacy for broader policies that alleviate barriers to acquiring healthy foods. CONCLUSION: Parents envision an expanded role for healthcare systems in ensuring their children benefit from a healthy diet. Findings offer critical insight on why clinic-driven programs aimed to address healthy eating may have failed and healthcare organizations may more effectively intervene by adopting a multilevel strategy.