A Qualitative Exploration of Self-Advocacy Experiences of Black Women in the Perinatal Period: Who Is Listening?

INTRODUCTION: Black women face poor maternal health outcomes including being over 3 times more likely to die from pregnancy complications than White women. Yet the lived experience of how these women self-advocate has not been clearly explored. The goal of this cross-sectional qualitative study was to describe the lived experiences of Black women advocating for their needs and priorities during the perinatal period. METHODS: Between January and October of 2022, we recruited Black women from obstetric clinics, research registries, and community advocacy groups who were either in their third trimester of pregnancy or within a year postpartum. Participants completed one-on-one interviews describing their experiences of self-advocacy. These data were analyzed using descriptive content analysis approaches that summarized women's experiences by iteratively creating major themes and subthemes that encapsulate their self-advocacy descriptions. RESULTS: Fifteen Black women completed interviews. Major themes and subthemes describing women's experience of self-advocacy were the following: (1) carrying a burden with subthemes of having to be good and easy, not trusting health care information and providers, and being dismissed; (2) building comfort with health care providers with subthemes of trusting I have a good provider, comfort in knowing they understand, and wanting low-touch, high-concern care; and (3) advocating for my child and myself when I need to with subthemes of going with the flow, becoming informed, pushing to ask questions, and balancing being proactive and pushy. DISCUSSION: Women reported self-advocating mainly due to experiences related to the burdens associated with not trusting providers and health care information. These findings provide clarity to how women carefully balance between ensuring their health is taken seriously while not jeopardizing their health or that of their newborn. This study offers promising directions to support Black women in advocating for their perinatal health care needs and values.

Understanding how COVID-19 affected black pregnant women early in the pandemic: A cross-sectional survey.

OBJECTIVE: Previous research has shown that the COVID-19 pandemic significantly increased anxiety among pregnant women, and at the same time, COVID-19 has disproportionately affected communities of color in the United States. We sought to understand how self-identied Black pregnant women in the United States were affected in the early days of the COVID-19 pandemic. DESIGN: Cross-sectional, online survey distributed via social media SETTING: Online PARTICIPANTS: Non-probability, convenience sample of self-identified Black pregnant women in the United States between April 3 and 24, 2020 who responded to an online inquiry seeking women who were pregnant at the outset of the COVID-19 pandemic. MEASUREMENTS AND FINDINGS: An anonymous, self-administered, online survey of pregnant women was conducted, including both quantitative assessment of demographics, COVID-related anxiety, and pregnancy-related anxiety as well as open-ended prompts for qualitative assessment of the impact of COVID on prenatal care, birth plans, anxiety and overall experience of pregnancy. Quantitative data were analyzed using Stata 15.0, qualitative data were thematically analyzed using NVivo12.1. Results were compared using joint display methodology. Of 87 self-identified Black or African-American women who responded, the most common concerns related to fear of getting infected with COVID (89.7 %, N = 78) and concerns related to loss of job/income (67.8 %, N = 59). More than half (55.2 %, N = 48) reported either themselves or their family members working in essential services. Findings indicate that uncertainty, lack of support, perceived quality of care, and heightened anxiety worked together to define Black women's experiences of pregnancy in the early days of the COVID-19 pandemic in the U.S. While quantitative data did not explicitly capture reports of discrimination as impacting perceived quality of care, the qualitative data suggest a link between fears of discrimination, the need for self-advocacy, and heightened anxiety. KEY CONCLUSIONS: Despite being a relatively well-educated sample of Black women from around the United States, many respondents spoke of the fears of discrimination, the need for self-advocacy, and heightened anxiety, reinforcing that discrimination and fear of discrimation for Black women in healthcare settings are pervasive, regardless of a woman's level of education or other socioeconomic status indicators. IMPLICATIONS FOR PRACTICE: These findings suggest that in times of uncertainty, such as the early days of the COVID-19 pandemic, it is more important than ever to provide thoughtful, supportive care to pregnant women of color who are primed for negative experiences in the healthcare settting.

Overlap between birth trauma and mistreatment: a qualitative analysis exploring American clinician perspectives on patient birth experiences.

INTRODUCTION: Research exploring the mistreatment of birthing people in the United States is emerging rapidly within the context of increasingly poor maternal health outcomes that include unacceptable racial disparities. Previous research has explored overlap between psychological birth trauma and mistreatment using patient descriptions of birth experiences, but no previous studies have explored these issues from the perspectives of clinicians. The aim of this study was to explore whether maternity care providers' descriptions of patient birth trauma overlap with categories of mistreatment from a globally accepted typology. METHODS: Content analysis was performed on a qualitative data set of 28 semi-structured interviews about patient birth trauma, completed in 2018-2019 with U.S. maternity care clinicians, including obstetricians, family physicians, midwives and labor/delivery nurses. The interviews were part of a larger study exploring maternity clinician perspectives and experiences of patient birth trauma. For this analysis Krippendorff's method of categoric distinction was used, with categories from a globally recognized typology of maternity patient mistreatment. RESULTS: Clinicians' descriptions of their experiences with patient birth trauma mapped onto all seven mistreatment categories, although no interview questions specifically asked about mistreatment. In more than 30 hours of interviews, transcribed to more than 800 pages, the word mistreatment appears only once, suggesting that some healthcare providers may use the phrase "birth trauma" as a euphemism to describe mistreatment. Eighteen of 28 interviews included at least one description that fit into a mistreatment category. "Failure to meet professional standards of care" was the category with the most mapped clinician statements, followed by "Stigma and discrimination" and "Poor rapport between women and providers." CONCLUSIONS: This study contributes new insight into maternity clinicians' conceptualization of patient trauma and how their descriptions of birth trauma overlap with mistreatment. Clinicians implicitly connected mistreatment with some patient experiences of birth trauma, even when they were not specifically asked about mistreatment. Findings point to a need for further research into mistreatment, including routinized "everyday care" that may include mistreatment, particularly for marginalized and historically excluded birthing people. Future research also must explore the potential role of mistreatment in poor and inequitable U.S. birth outcomes.

Many people giving birth in the United States experience poor health outcomes, and there is a wide racial disparity, with people of color more likely to experience poor outcomes. In recent research, birthing people reported that they were mistreated during their labor and delivery, including being shouted at, scolded, or threatened. Mistreatment accounts were more frequent among women of color. Previous research has looked at patient reports about their birth experiences to explore whether their descriptions of psychological trauma include overlap with mistreatment, but no other studies have looked at descriptions of birth trauma from the perspectives of medical clinicians. The objective of this study was to explore whether maternity care providers' descriptions of patient birth trauma overlap with categories of mistreatment from a globally accepted list. This study analyzed the content of 28 semi-structured interviews about patient birth trauma, completed in 2018­2019 with obstetricians, family physicians, midwives and labor/delivery nurses. In the interviews, participant descriptions of patient birth trauma fit into all seven mistreatment categories. Participant descriptions included examples of patients receiving medical procedures or treatments without first giving consent, nurses avoiding the rooms of patients who do not speak English, and other forms of mistreatment. Participants were not asked specifically about mistreatment, but they described birth trauma by giving examples of mistreatment, which suggests that some healthcare providers may use the phrase "birth trauma" when talking about "mistreatment." This study shows a need for further research into mistreatment, including routine "everyday care" that may include mistreatment.

COVID-19 and Decision-Making for Pregnant Women: Taking or Relinquishing Control in Response to a Pandemic.

COVID-19 has uniquely impacted pregnant women. From the initial unknowns about its virulence during pregnancy, to frequent and rapidly changing hospital guidelines for prenatal care and delivery, pregnant women have felt intense uncertainty and, based on recent research, increased anxiety. This study sought to determine the impact COVID-19 had on women's birth plans. Open-ended qualitative responses from an anonymous, online survey of pregnant women in the United States, conducted on April 3-24, 2020, were analyzed using the Attride-Stirling qualitative framework. A conceptual framework for understanding the impact of COVID-19 on women's birth plans was generated. 2,320 pregnant women (mean age 32.7 years, mean weeks pregnant 24.6 weeks) responded to the open-ended prompts, reflecting the following themes: the impact(s) of COVID-19 on pregnant women (including unanticipated changes and uncertainty), the effect of COVID-19 on decision-making (including emotional reactions and subsequent questioning of the healthcare system), and how both of those things led women to either exercise or relinquish their agency related to their birth plan. These findings indicate that the changes and uncertainty surrounding COVID-19 are causing significant challenges for pregnant women, and absent more clarity and more provider-driven support, women seeking to cope are considering changes to their birth plans. Health systems and providers should heed this warning and work to provide pregnant women and their families with more information, support, and collaborative planning to ensure a positive, healthy birth experience, even during a pandemic.

The impact of COVID-19 on prenatal care in the United States: Qualitative analysis from a survey of 2519 pregnant women.

OBJECTIVE: To explore if and how women perceived their prenatal care to have changed as a result of COVID-19 and the impact of those changes on pregnant women. DESIGN: Qualitative analysis of open-ended prompts included as part of an anonymous, online, cross-sectional survey of pregnant women in the United States. SETTING: Online survey with participants from 47 states within the U.S. PARTICIPANTS: Self-identified pregnant women recruited through Facebook, Twitter, and other online sources. MEASUREMENTS AND FINDINGS: An anonymous, online survey of pregnant women (distributed April 3 - 24, 2020) included an open-ended prompt asking women to tell us how COVID-19 had affected their prenatal care. Open-ended narrative responses were downloaded into Excel and coded using the Attride-Sterling Framework. 2519 pregnant women from 47 states responded to the survey, 88.4% of whom had at least one previous birth. Mean age was 32.7 years, mean weeks pregnant was 24.3 weeks, and mean number of prenatal visits at the point of the survey was 6.5. Predominant themes of the open narratives included COVID-19's role in creating structural changes within the healthcare system (reported spontaneously by 2075 respondents), behavioral changes among both pregnant women and their providers (reported by 429 respondents), and emotional consequences for women who were pregnant (reported by 503 respondents) during the pandemic. Changes resulting from COVID-19 varied widely by provider, and women's perceptions of the impact on quality of care ranged from perceiving care as extremely compromised to perceiving it to be improved as a result of the pandemic. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Women who are pregnant during the COVID-19 pandemic have faced enormous upheaval as hospitals and healthcare providers have struggled to meet the simultaneous and often competing demands of infection prevention, pandemic preparedness, high patient volumes of extremely sick patients, and the needs of 'non-urgent' pregnant patients. In some settings, women described very few changes, whereas others reported radical changes implemented seemingly overnight. While infection rates may drive variable responses, these inconsistencies raise important questions regarding the need for local, state, national, or even global recommendations for the care of pregnant women during a global pandemic such as COVID-19.

Neonatal mortality in rural northern Ghana and the three delays model: are we focusing on the right delays?

OBJECTIVE: The Three Delays Model outlines, three common delays that lead to poor newborn outcomes: (i) recognising symptoms and deciding to seek care; (ii) getting to care and; (iii) receiving timely, high-quality care. We gathered data for all newborn deaths within four districts in Ghana to explore how well the Three Delays Model explains outcomes. METHODS: In this cross-sectional, observational study, trained field workers conducted verbal and social autopsies with the closest surviving relative (typically mothers) of all neonatal deaths across four districts in northern Ghana from September 2015 until April 2017. Data were collected using Survey CTO and analysed using StataSE 15.0. Frequencies and descriptive statistics were calculated for key variables. RESULTS: 247 newborn deaths were identified. Nearly 77% (190) of newborns who died were born at a health facility, and 48.9% (93) of those who died before discharge. Of the 149 newborns who were discharged or born at home, 71.8% (107) sought care at a facility for illness, and 72.9% (N = 78) of those did so within the same day of illness recognition. Of the 83 respondents who arranged for transportation, 82% (68) did so within 1 h. Newborns received prompt care but insufficient interventions - 25% or fewer received IV fluids, oral medications, antibiotics or oxygen. CONCLUSIONS: These data suggest that women are following recommendations for safe delivery and prompt care-seeking. In rural northern Ghana, behaviour change interventions focused on mothers and families may not be as pressing as interventions focused on the Third Delay - obtaining timely, high-quality care.

'Asram is really killing us here': attribution for pregnancy losses and newborn mortality in the Ashanti Region of Ghana.

While overall neonatal mortality rates are improving in Ghana, the Ashanti Region has the highest mortality rate in the country. The clinical causes of newborn deaths are well known, yet local beliefs about illness aetiology, cause of death and care-seeking are less well understood. This exploratory qualitative study sought to understand how community members perceive and respond to neonatal illness. Researchers worked with public health nurses, community health nurses and opinion leaders in the Ashanti Region of Ghana to identify women who had lost a baby, either during pregnancy or after delivery. In-depth interviews and focus group discussions were conducted about knowledge, attitudes and beliefs regarding neonatal mortality. The transcripts were coded and analysed using NVivo 10.0. A total of 100 participants were interviewed: 24% reported a previous stillbirth; 37% reported a previous miscarriage; and 45% reported losing a baby who was born alive. Nine per cent experienced more than one type of loss. The local illness of asram - an illness with supernatural causes - was cited as a leading cause of death of newborns. Every participant reported hearing of, knowing someone, or having a child who had become ill with asram. While women gave varying information on symptoms, method of contraction and treatment, all participants agreed that asram was common and often fatal. Four overarching themes emerged: 1) asram is not a hospital sickness; 2) there is both a fear of traditional healers as a source of asram, as well as a reliance upon them to cure asram; 3) there are rural/urban differences in perceptions of asram; and 4) asram may serve as a mechanism of social control for pregnant women and new mothers. Local beliefs and practices must be better understood and incorporated into health education campaigns if neonatal mortality is to be reduced in Ghana.

Pregnancy-related anxiety during COVID-19: a nationwide survey of 2740 pregnant women.

The aim of this study is to explore the impact of the COVID-19 pandemic on pregnant women's anxiety and identify factors most strongly associated with greater changes in anxiety. An anonymous, online, survey of pregnant women (distributed April 3-24, 2020) included a modified pregnancy-related anxiety scale (PRAS) reflecting respondents' perception of pregnancy anxiety before COVID-19 and a current assessment of pregnancy-related anxiety. The difference between these scores was used as the outcome variable. Data were analyzed using bivariate and multivariate linear regression analyses. Two thousand seven hundred forty pregnant women from 47 states completed the survey. 25.8% (N = 706) stopped in-person visits, 15.2% used video visits (N = 415), and 31.8% (N = 817) used phone visits for prenatal care as a result of COVID-19. Those planning a hospital birth dropped from 2641 (96.4%) to 2400 (87.7%) following COVID-19. More than half of women reported increased stress about food running out (59.2%, N = 1622), losing a job or household income (63.7%, N = 1745), or loss of childcare (56.3%, N = 1543). More than a third reported increasing stress about conflict between household members (37.5%, N = 1028), and 93% (N = 2556) reported increased stress about getting infected with COVID-19. Slightly less than half of respondents (either selves or family members) were healthcare workers (41.4%, N = 1133) or worked in essential services (45.5%, N = 1246). In multivariate analysis, those reporting higher agreement with COVID-19-related stressors had greater changes in pre- to post-COVID-19 pregnancy-related anxiety. The COVID-19 pandemic is profoundly affecting pregnant women's mental health, and factors independent of pregnancy appear to be driving changes in pregnancy-specific anxiety.

Why do community members believe mothers and babies are dying? Behavioral versus situational attribution in rural northern Ghana.

OBJECTIVE: Rates of maternal and neonatal death remain high in the Global South, especially in Sub-Saharan Africa. In addition, indicators vary significantly by geography. This study aimed to understand what communities in northern Ghana with frequent maternal and newborn deaths or near deaths (near-misses) perceive to be the causes. As part of a larger study, four communities in Ghana's Northern Region were identified as areas with high concentrations of deaths and near-misses of mothers and babies. DESIGN: Stakeholders were interviewed using in-depth interviews (IDIs) and focus-group discussions (FGDs). Field workers conducted 12 FGDs and 12 IDIs across a total of 126 participants. SETTING: This exploratory descriptive study was conducted in the East Mamprusi District in the Northern Region of Ghana, in the communities of Jawani, Nagboo, Gbangu and Wundua. PARTICIPANTS: FGDs were led by trained field workers and attended by traditional chiefs and their elders, members of women's groups, and traditional birth attendants in each of the four study communities. IDIs, or one-on-one interviews, were conducted with traditional healers who manage maternal and neonatal cases, community health nurses, and midwives. MEASUREMENTS AND FINDINGS: Qualitative data were audio-recorded, transcribed, and thematically analyzed using the Attride-Sterling analytical framework. Discussions focused on where blame should be attributed for the negative outcomes of mothers and babies - with blame either being directed at the actions or inactions of the mothers (behavioral), or at the larger factors associated with poverty (situational) that necessitate mothers' behavior. For example, some respondents blamed women for their poor diets, while others blamed the lack of money or household support to buy nutritious foods. Blame was rarely attributed to the fathers despite local gender norms of males being the household decision-makers with regard to spending and care-seeking. KEY CONCLUSIONS: These findings contribute to a small but growing body of literature on the blaming of mothers for their own deaths and those of their newborns - a phenomenon also described in high-income countries - and is supported by blame attribution theories that explain the self-protective nature of victim-blaming. IMPLICATIONS FOR PRACTICE: These results carry important implications for education and intervention design related to maternal and neonatal mortality, including more focused efforts at incorporating men and the larger community. More research is warranted on blame attribution for these adverse outcomes and its effects on the victims.

'I am still confused as to what caused the problem': Perceptions of mothers on communication regarding newborn illness and death in Northern Ghana.

Neonatal morbidity and mortality remain a significant challenge in Ghana. Given the relationship between care-seeking and understanding of illness, this study aimed to explore mothers' perceptions of the cause of illness and/or death in Northern Ghana. All neonatal deaths and near-misses (babies who survived a life-threatening complication) in 2015 and 2016 were identified through a community - and facility-based surveillance system. Mothers of the deceased or ill infants participated in open narrative qualitative interviews. Narratives that included discussion of whether the mother understood what caused the baby's illness or death were analysed. Interviews with 155 mothers included discussion of their perception of the cause of newborn illness or death. Of the 155 interviews, 108 interviews involved mothers whose babies died, and 47 interviews involved mothers whose newborns survived a life-threatening illness, a neonatal 'near-miss'. Very few expressed a clear understanding of the cause of death or illness. Those mothers who did not understand were either not told or did not understand the cause of illness or death. Newborn health outcomes may be improved by increased maternal awareness and understanding of neonatal illnesses. Future interventions need to address communication issues that impair mothers' understanding, facilitate recognition of danger signs, and prompt timely care-seeking.

Understanding the gap in emergency obstetric and neonatal care in Ghana through the PREventing Maternal And Neonatal Deaths (PREMAND) study.

OBJECTIVE: To explore basic and comprehensive emergency obstetric service provision across four districts in rural northern Ghana, and whether women were more likely to deliver at facilities with more skilled care. METHODS: Field workers geo-coded all health facilities in East Mamprusi, Sissala East, Kassena Nankana Municipal, and Kassena Nankana West districts, and administered surveys to assess providers and emergency obstetric care available. Data were also prospectively collected on delivery locations of women and neonates who died, or nearly died (near misses), between September 1, 2015 and April 30, 2017. RESULTS: There were 14 physicians for a population of nearly 360 000 women. Six (6%) facilities could provide basic emergency care, and 3 (3%) could provide comprehensive care. Services were distributed unequally, with 6 (67%) of the emergency facilities located in the least populated district. Among the sample of women and neonates who died or nearly died, 175 (39%) delivered at locations unable to provide basic emergency services. CONCLUSION: Access to emergency obstetric and neonatal care was distributed inequitably across these districts, suggesting the need to revisit geographic placement of facilities relative to population. The study also raised the question of how to ensure facilities are equipped to respond to emergencies.

Peer characteristics associated with improved glycemic control in a randomized controlled trial of a reciprocal peer support program for diabetes.

OBJECTIVE: In a secondary analysis of a randomized controlled trial of diabetes reciprocal peer support, we examined characteristics of peers associated with improvements in their partner's glycemic control. METHODS: A total of 102 adults with diabetes were randomized to the reciprocal peer support arm (vs. a nurse care management arm). The primary outcome was change in A1c over six months. Intermediate outcomes were insulin initiation and peer engagement. A number of baseline characteristics of peers were hypothesized to influence outcomes for their peer, and concordant characteristics of peer dyads were hypothesized that would influence outcomes for both peer partners. RESULTS: Improvement in A1c was associated with having a peer older than oneself ( P < .05) or with higher diabetes-related distress ( P < .01). Participants with peers who reported poorer health at baseline had worse glycemic control at follow-up ( P < .01). Hypothesized concordant characteristics were not associated with A1c improvements. Participants whose peers had a more controlled self-regulation style were more likely to initiate insulin ( P < .05). DISCUSSION: The improved outcomes of peers whose partners were older and reported more diabetes distress at baseline supports the need for further research into the peer characteristics that lead to improved outcomes. This could allow for better matching and more effective partnerships.

Challenges facing community health workers in Brazil's Family Health Strategy: A qualitative study.

Community health worker (CHW) programs are implemented in many low- and middle-income countries such as Brazil to increase access to and quality of care for underserved populations; CHW programs have been found to improve certain indicators of health, but few studies have investigated the daily work of CHWs, their perspectives on what both helps and hinders them from fulfilling their roles, and ways that their effectiveness and job satisfaction could be increased. To examine these questions, we observed clinic visits, CHW home visits, and conducted semistructured interviews with CHWs in 7 primary care centers in Brazil-2 in Salvador, Bahia, and 5 in São Paulo, SP-in which CHWs are incorporated into the work of all primary care health teams. In addition to enhancing communication between the medical system and the community, CHWs consider their key roles to be helping persuade community members to seek medical care and increasing health professionals' awareness of the social conditions affecting their patients' health. Key obstacles that CHWs face include failure to be fully integrated into the primary care team, inability to follow-up on identified health needs due to limited resources, as well as community members' lack of understanding of their work and undervaluing of preventative medicine. Increased training, better incorporation of CHWs into clinic flow and decision making, and establishing a clear community awareness of the roles and value of CHWs will help increase the motivation and effectiveness of CHWs in Brazil.

Using social autopsy to understand maternal, newborn, and child mortality in low-resource settings: a systematic review of the literature.

BACKGROUND: Social, cultural, and behavioral factors are often potent upstream contributors to maternal, neonatal, and child mortality, especially in low- and middle-income countries (LMICs). Social autopsy is one method of identifying the impact of such factors, yet it is unclear how social autopsy methods are being used in LMICs. OBJECTIVE: This study aimed to identify the most common social autopsy instruments, describe overarching findings across populations and geography, and identify gaps in the existing social autopsy literature. METHODS: A systematic search of the peer-reviewed literature from 2005 to 2016 was conducted. Studies were included if they were conducted in an LMIC, focused on maternal/neonatal/infant/child health, reported on the results of original research, and explicitly mentioned the use of a social autopsy tool. RESULTS: Sixteen articles out of 1950 citations were included, representing research conducted in 11 countries. Five different tools were described, with two primary conceptual frameworks used to guide analysis: Pathway to Survival and Three Delays models. Studies varied in methods for identifying deaths, and recall periods for respondents ranged from 6 weeks to 5+ years. Across studies, recognition of danger signs appeared to be high, while subsequent care-seeking was inconsistent. Cost, distance to facility, and transportation issues were frequently cited barriers to care-seeking, however, additional barriers were reported that varied by location. Gaps in the social autopsy literature include the lack of: harmonized tools and analytical methods that allow for cross-study comparisons, discussion of complexity of decision making for care seeking, qualitative narratives that address inconsistencies in responses, and the explicit inclusion of perspectives from husbands and fathers. CONCLUSION: Despite the nascence of the field, research across 11 countries has included social autopsy methods, using a variety of tools, sampling methods, and analytical frameworks to determine how social factors impact maternal, neonatal, and child health outcomes.

Perspectives and experiences of community health workers in Brazilian primary care centers using m-health tools in home visits with community members.

BACKGROUND: Mobile health (m-health) tools are a promising strategy to facilitate the work of community health workers (CHWs) in low- and middle-income countries (LMICs). Despite their potential value, little is known about CHWs' experiences working with m-health tools in their outreach activities with community members. METHODS: To understand the benefits of and barriers to using m-health tools for CHWs, we conducted semi-structured interviews with 57 CHWs employed in six primary care centers in São Paulo, Brazil. All CHWs had experience using a cell phone application called Geohealth for collecting health and demographic data of community members. We assessed their experiences using Geohealth and recommendations for improvements. RESULTS: CHWs described key benefits of using Geohealth as helping them save time with bureaucratic paperwork, organizing the data that they needed to collect, and by replacing sheaves of paper, reducing the weight that they carried in the field. However, there were many technical and social barriers to the successful adoption of the m-health tool. Key among these were poor quality hardware, faulty software programs, and negative community member perceptions of the m-health program. The CHWs provided valuable input as to how Geohealth could be improved to fit their needs. CONCLUSION: m-health tools have the potential to facilitate the work of CHWs in LMICs. However, such tools must be designed and implemented thoughtfully. Technical barriers related to both hardware and software must be anticipated and addressed to maximize their efficiency and successful adoption. CHW input on the design of the tool should be sought to maximize its utility and minimize barriers to use.

Public Policies and Interventions for Diabetes in Latin America: a Scoping Review.

PURPOSE OF REVIEW: Successful interventions are needed to diagnose and manage type 2 diabetes (T2DM) in Latin America, a region that is experiencing a significant rise in rates of T2DM. Complementing an earlier review exploring diabetes prevention efforts in Latin America, this scoping review examines the literature on (1) policies and governmental programs intended to improve diabetes diagnosis and treatment in Latin America and (2) interventions to improve diabetes management in Latin America. It concludes with a brief discussion of promising directions for future research. RECENT FINDINGS: Governmental policies and programs for the diagnosis and treatment of diabetes in different Latin American countries have been implemented, but their efficacy to date has not been rigorously evaluated. There are some promising intervention approaches in Latin America to manage diabetes that have been evaluated. Some of these utilize multidisciplinary teams, a relatively resource-intensive approach difficult to replicate in low-resource settings. Other evaluated interventions in Latin America have successfully leveraged mobile health tools, trained peer volunteers, and community health workers (CHWs) to improve diabetes management and outcomes. There are some promising approaches and large-scale governmental efforts underway to curb the growing burden of type 2 diabetes in Latin America. While some of these interventions have been rigorously evaluated, further research is warranted to determine their effectiveness, cost, and scalability in this region.

Development and application of the RE-AIM QuEST mixed methods framework for program evaluation.

To increase the likelihood of successful implementation of interventions and promote dissemination across real-world settings, it is essential to evaluate outcomes related to dimensions other than Effectiveness alone. Glasgow and colleagues' RE-AIM framework specifies four additional types of outcomes that are important to decision-makers: Reach, Adoption, Implementation (including cost), and Maintenance. To further strengthen RE-AIM, we propose integrating qualitative assessments in an expanded framework: RE-AIM Qualitative Evaluation for Systematic Translation (RE-AIM QuEST), a mixed methods framework. RE-AIM QuEST guides formative evaluation to identify real-time implementation barriers and explain how implementation context may influence translation to additional settings. RE-AIM QuEST was used to evaluate a pharmacist-led hypertension management intervention at 3 VA facilities in 2008-2009. We systematically reviewed each of the five RE-AIM dimensions and created open-ended companion questions to quantitative measures and identified qualitative and quantitative data sources, measures, and analyses. To illustrate use of the RE-AIM QuEST framework, we provide examples of real-time, coordinated use of quantitative process measures and qualitative methods to identify site-specific issues, and retrospective use of these data sources and analyses to understand variation across sites and explain outcomes. For example, in the Reach dimension, we conducted real-time measurement of enrollment across sites and used qualitative data to better understand and address barriers at a low-enrollment site. The RE-AIM QuEST framework may be a useful tool for improving interventions in real-time, for understanding retrospectively why an intervention did or did not work, and for enhancing its sustainability and translation to other settings.

A pilot study of a Community Health Agent-led type 2 diabetes self-management program using Motivational Interviewing-based approaches in a public primary care center in São Paulo, Brazil.

BACKGROUND: Rates of noncommunicable diseases (NCDs) such as type 2 diabetes are escalating in low and middle-income countries such as Brazil. Scalable primary care-based interventions are needed to improve self-management and clinical outcomes of adults with diabetes. This pilot study examines the feasibility, acceptability, and outcomes of training community health agents (CHAs) in Motivational Interviewing (MI)-based counseling for patients with poorly controlled diabetes in a primary care center in São Paulo, Brazil. METHODS: Nineteen salaried CHAs participated in 32 h of training in MI and behavioral action planning. With support from booster training sessions, they used these skills in their regular monthly home visits over a 6 month period with 57 diabetes patients with baseline HbA1cs > 7.0%. The primary outcome was patients' reports of the quality of diabetes care as measured by the Portuguese version of the Patient Assessment of Chronic Illness Care (PACIC) scale. Secondary outcomes included changes in patients' reported diabetes self-management behaviors and in A1c, blood pressure, cholesterol and triglycerides. We also examined CHAs' fidelity to and experiences with the intervention. RESULTS: Patients reported improvements over the 6 month period in quality of diabetes care received (PACIC score improved 33 (+/-19) to 68 (+/-21) (p < .001)). They reported increases in physical activity (p = .001), consumption of fruits and vegetables (p < .001) and medication adherence (p = .002), but no decreases in consumption of high-fat foods (p = .402) or sweets (p = .436). Participants had mean 6-month A1c levels 0.34% points lower than at baseline (p = .08) and improved mean LDL (-16.1 mg/dL, p = .005) and triglyceride levels (-38.725 mg/dL, p = .002). Of the 16 CHAs observed in fidelity assessments, 13 were categorized as medium- or high-performing on MI skills, while 3 were low-performing. CHAs expressed enthusiasm about learning new skills, and many described a shift from advice-giving to encouraging patients to define their own goals. CONCLUSION: In resource-scarce settings, it is essential to fully utilize existing primary care resources to stem the epidemic of diabetes and other NCDs. Our pilot results support the potential of training CHAs to incorporate effective diabetes self-management support into their routine patient encounters. TRIAL REGISTRATION: NCT02994095 12/14/2016 Registered retrospectively.

Diabetes Prevention Interventions in Latin American Countries: a Scoping Review.

Public policies, population health initiatives, and targeted behavioral change interventions for individuals at risk for developing diabetes are all essential for diabetes prevention in Latin American countries (LACs). This scoping review examines (1) the current evidence on diabetes prevention policies and interventions in LACs to identify components of effective diabetes prevention models in those countries and (2) effective diabetes prevention interventions targeting Latino populations in the USA to explore possible lessons from these interventions for LACs. Diabetes prevention programs in LACs evaluated to date consist of short-term health professional-led face-to-face behavioral counseling sessions. Intervention components of US-based programs for Latinos that might benefit diabetes prevention programs in Latin America include (1) deployment of community health workers ("promotoras") for diabetes screening and delivery of lifestyle modification programs, (2) multiple modes of program delivery beyond face-to-face sessions, (3) information technology to automate and enhance program delivery, (4) leveraging of pre-existing familial relationships to engage in and sustain lifestyle modifications, and (5) innovative environmental change strategies such as collaborations with local food stores and markets to promote healthy behaviors.