Conducting caregiver focus groups on autism in the context of an international research collaboration: Logistical and methodological lessons learned in South Africa.

LAY ABSTRACT: Most of the autism research to date has been conducted in high-income countries, with children and families typically from White, upper-middle-income backgrounds. However, we know there are significant inequalities that exist which influence how autistic individuals from diverse, underserved communities can access services they need. As many of these individuals have not been included in the majority of autism research to date, there is much we do not know about these individuals' life experiences, which are critically needed to better inform the development and implementation of care for families from historically underrepresented groups. In this article, we describe the research process we took to conduct focus group discussions with 22 caregivers of young autistic children living in Cape Town, South Africa. We specifically describe the lessons we learned in implementing these focus groups and provide recommendations aimed at how to best reduce logistical and methodological challenges moving forward to improve research conducted in similar low-resource contexts.

Keepers of the House: A documentary.

BACKGROUND: Our documentary, Keepers of the House, highlights ways that hospital housekeepers, typically unnoticed care team members, provide emotional support for patients and their families. This film addresses a gap in education by emphasizing the importance of valuing and reflecting on the unique lived experiences of others. APPROACH: We created this documentary to expose students to the experiences and perceptions of hospital housekeepers. A focus group with six hospital housekeepers informed an interview script for the film's creation. Nine additional housekeepers were then interviewed, which developed into a 15-min documentary. Healthcare students and educators from five disciplines viewed the documentary during their institution's Medical Education Day. EVALUATION: To expose students and educators to housekeepers' experiences, we designed our post-viewing survey to address whether the housekeepers' stories impacted their understanding of the role and value of these workers. Viewers were surprised by the depth and breadth of patient-housekeeper interactions, the trauma housekeepers experienced from patient loss and the pride housekeepers take in their work. The stories that touched the viewers varied but centred on connections between housekeepers and patients. Lessons learned focused on recognizing the contributions of unseen team members. IMPLICATIONS: This innovative documentary amplifies the perspectives of voices rarely heard in healthcare. We aim to use this film, alongside its associated learning session, in education and grand round settings to foster discussion around empathy, valuing underrecognised team members and applying these insights in practice. This work can be disseminated to other institutions, further amplifying underrepresented narratives in healthcare.

Youth-friendly HIV self-testing: Acceptability of campus-based oral HIV self-testing among young adult students in Zimbabwe.

BACKGROUND: Targeted HIV testing strategies are needed to reach remaining undiagnosed people living with HIV and achieve the UNAIDS' 95-95-95 goals for 2030. HIV self-testing (HIVST) can increase uptake of HIV testing among young people, but user perspectives on novel distribution methods are uncertain. We assess the acceptability, perceived challenges, and recommendations of young adult lay counselor-led campus-based HIVST delivery among tertiary school students aged 18-24 years in Zimbabwe. METHODS: We purposively sampled participants from an intervention involving campus-based HIVST using lay workers for distribution. We conducted in-depth interviews (IDIs) and focus group discussions (FGDs) among young adults from 10 universities and colleges in Zimbabwe who: (1) self-tested on campus; (2) self-tested off campus; and (3) opted not to self-test. We audio recorded and transcribed all interviews. Using applied thematic analysis, two investigators identified emergent themes and independently coded transcripts, achieving high inter-coder agreement. RESULTS: Of the 52 young adults (53.8% male, 46.1% female) interviewed through 26 IDIs and four FGDs, most IDI participants (19/26, 73%) favored campus-based HIVST, describing it as a more autonomous, convenient, and socially acceptable experience than other facility or community-based HIV testing services. Despite general acceptability, participants identified challenges with this delivery model, including: perceived social coercion, insufficient privacy and access to post-test counseling. These challenges influenced some participants to opt against self-testing (6/52, 11.5%). Recommendations for improved implementation included integrating secondary distribution of test kits and increased HIV counseling options into campus-based programs. CONCLUSIONS: Barriers to HIV testing among young people are numerous and complex. As the number of new HIV infections among youth continue to grow worldwide, targeted strategies and youth friendly approaches that increase access to testing are needed to close the diagnostic coverage gap. This is the first study to describe young adult acceptance of campus-based delivery of HIVST by lay counselors in Zimbabwe.

Sickle cell disease is a global prototype for integrative research and healthcare.

Differences in health outcomes and treatment responses within and between global populations have been well documented. There is growing recognition of the need to move beyond simple inventories and descriptions of these differences and our linear explanations for them, and gain a better understanding of the multifaceted systems and networks underlying them in order to develop more precise and effective remedies. Typical targets for such integrative research have been common multifactorial diseases. We propose sickle cell disease, one of the most common monogenic diseases, as an ideal candidate for elucidating the complexity of the influences of endogenous and exogenous factors on disease pathophysiology, phenotypic diversity, and variations in responses to treatments at both the individual and population levels. We provide data-informed representations of diverse contributors to sickle cell disease complications that could guide innovative efforts to advance scientific knowledge, clinical practice, and policy formulation related to the disease; help improve outcomes for people worldwide with sickle cell disease; and inform approaches to studying and addressing other diseases.

Adolescents' and caregivers' perceptions of caregiver-provided testing and HIV self-testing using oral mucosal transudate tests in Zimbabwe: a short report.

Uptake of HIV testing remains lower among children and adolescents compared to adults. This study explored adolescents' perceptions of HIV self-testing (HIVST) and caregivers' perceptions of testing their children using an oral mucosal transudate (OMT) rapid HIV test (caregiver-provided testing). We conducted 31 interviews with adolescents aged 16-18 years and caregivers of children aged 2-15 years who received an OMT test. Participants described barriers to HIV testing including lack of privacy and the potential for discrimination by community members towards children and adolescents who received an HIV test. Most participants felt caregiver-provided testing and HIVST could address these barriers through increased privacy. Some participants expressed worry about their ability to correctly perform the OMT and their anxious reactions to a positive result. Counseling and assistance from health care workers were viewed as ways to alleviate concerns. Concerns shaped participants' preferences for facility-based HIVST and caregiver-provided testing. Findings demonstrate HIVST performed by adolescents and caregiver-provided testing could increase the uptake of HIV testing. Concerns related to being able to test correctly and the availability of post-test counseling must be addressed in any future delivery mechanisms.

Experiences of Family Caregivers After an Acute Neurological Event.

BACKGROUND: Family of patients hospitalized in an intensive care unit (ICU) often immediately assume the role of caregiver to an individual with significant health care needs. The transition into this caregiver role may be sudden and unexpected; their experiences are not well understood. The purpose of this qualitative study was to explore experiences of family caregivers in the neurocritical care unit in order to identify areas for enhancing patient- and family-centered care. METHODS: This single-center ethnographic study explored the use of systems theory to investigate the perceptions, experiences, and attitudes of family/caregivers regarding their relationships and interactions between the patient, other family, members of the healthcare provider team, and health system after an acute neurological event in Argentina. Field notes from 9 weeks of direct observation together with transcripts from nine semi-structured interviews (transcribed verbatim and translated from Spanish to English) were analyzed using a grounded theory approach. RESULTS: Nine themes emerged based on iterative thematic analysis, including: adjusting to a changed life, managing emotions, changing role, relying on faith, redefining recovery, participating in patient care, depending on clinical experts, el tratohumano, and finding unity in purpose. In the neurocritical care environment, an important intermediary role exists for family/caregivers and the patient, other family, and healthcare providers. CONCLUSIONS: The results demonstrate the potential for family, providers, and the health system to influence family/caregivers' experience with neurocritical care. Involving families as part of the care team could have implications for patient- and family-centered care.

"Pain is Subjective": A Mixed-Methods Study of Provider Attitudes and Practices Regarding Pain Management in Sickle Cell Disease Across Three Countries.

CONTEXT: Sickle cell disease (SCD), an autosomal recessive blood disorder, affects millions of people worldwide. Approximately 80% of all cases are located in Africa. OBJECTIVES: This cross-national, interdisciplinary, collaborative study investigated provider attitudes about, and practices for, managing (assessing and treating) SCD pain. METHODS: We conducted 111 quantitative surveys and 52 semistructured interviews with health-care providers caring for adults and/or children with SCD in Cameroon, Jamaica, and the U.S. RESULTS: Applying Haywood's scale for assessing SCD provider attitudes, the Jamaica site scored lower on "Negative Attitudes" than the Cameroonian and U.S. sites (P = 0.03 and <0.001, respectively). Providers at the U.S. site scored lower on "Positive Attitudes" than other sites (P < 0.001). "Red Flag" scores at the Cameroon sites were lower than at other sites (P < 0.001). Qualitative results across all three sites describe the current practices for SCD pain management, as well as the challenges surrounding management for health providers, including pain subjectivity, patient-provider and parent-provider relationships, resource availability, perceptions of drug-seeking behavior, and adherence. Providers also spontaneously offered solutions to reported challenges. CONCLUSION: Overall, findings reveal that SCD provider attitudes toward their patients differed across sites, yet at all three sites, treating SCD pain is multidimensional.

Reciprocity in Quarantine: Observations from Wuhan's COVID-19 Digital Landscapes.

The 2003 SARS pandemic heralded the return of quarantine as a vital part of twenty-first century public health practice. Over the last two decades, MERS, Ebola, and other emerging infectious diseases each posed unique challenges for applying quarantine ethics lessons learned from the 2003 SARS-CoV-1 outbreak. In an increasingly interdependent and connected global world, the use of quarantine to contain the spread of SARS-CoV-2, or COVID-19, similarly poses new and unexpected ethical challenges. In this essay, we look beyond standard debates about the ethics of quarantine and state power to explore a key quarantine principle, Reciprocity, and how it is being negotiated by healthcare workers, volunteers, and citizens in the context of the Wuhan, China, quarantine. We analyze Reciprocity through the lens of two Wuhan case studies: (1) healthcare workers, particularly nurses, who are simultaneously essential workers and quarantined citizens, asked by their hospital administration to shave their heads because adequate PPE was not available, and (2) citizen-to-citizen mutual aid societies attempting to fill gaps in essential supplies left unfilled by the state. We analyze social media and video-blogs from Wuhan, on the platforms of Douyin and Sina Weibo, to understand how people define and respond to ethical and legal obligations in the wake of COVID-19. It is no surprise that quarantine principles from the 2003 SARS outbreak are inadequate for COVID-19 and that both infectious disease outbreak responses and ethics must adapt to the virtual age. We offer ideas to strengthen and clarify Reciprocal obligations for the state, hospital administrators, and citizens as the globe prepares for the next wave of COVID-19 circulating now.

How Should Clinicians Integrate Mental Health Into Epidemic Responses?

The 2014 Ebola epidemic in Sierra Leone and the current outbreak that began in 2018 in the Democratic Republic of the Congo generated numerous mental health crises that remain unaddressed by global standard infectious disease protocols. This article explores how responders should integrate mental health care into standard Ebola care.

Challenges and facilitators of transition from adolescent to adult HIV care among young adults living with HIV in Moshi, Tanzania.

INTRODUCTION: Scale up of anti-retroviral therapy has enabled millions of children infected with HIV to survive into adulthood, requiring transition of care to the adult HIV clinic. This transition period is often met with anxiety and reluctance. Youth who fail to transition may create strain on capacity in the pediatric and adolescent clinics or result in individuals dropping out of care entirely. This study examined challenges and facilitators to the transition among young adults living with HIV in Moshi, Tanzania. METHODS: From April to June 2017, in-depth interviews were conducted with young adults aged 18 to 27 years living with HIV in order to capture the spectrum of experiences from pre-transitioning youth to those who successfully transitioned to adult care. Young adults were purposively recruited based on prior study enrollees and recommendations from healthcare staff. Recruitment occurred in the adolescent, adult HIV and the prevention of mother to child transition clinics at Kilimanjaro Christian Medical Centre. Two separate in-depth interviews were conducted with eligible participants. Medical records were reviewed retrospectively to collect information on HIV-related outcomes. RESULTS: In-depth interviews were held with 19 young adults. Participants mean age was 23.8 years (interquartile range 22.2 to 26.3 years); 53% were female. Most (78.9%) participants had been receiving anti-retroviral therapy for nearly a decade and 72.2% were virologically suppressed (HIV RNA <200 copies/mL). Barriers to transition included fear of losing peer networks formed in the adolescent clinic, the abrupt manner in which young adults were asked to transition, stigma, financial constraints and a lower quality of care in the adult clinic. Facilitators of transition included family and social support, positive perspectives on living with HIV and maintenance of good health. Recommendations for transition included transition preparation, transition as a group and adoption of desirable aspects of the adolescent clinic (peer networks and education) in the adult clinic. CONCLUSIONS: Transition is a complex process influenced by many factors. As the number of young adults living with HIV continues to grow, it is vital to develop a transition protocol that addresses these challenges and is feasible to implement in low-resource settings.

Brief Report: Diagnostic Accuracy of Oral Mucosal Transudate Tests Compared with Blood-Based Rapid Tests for HIV Among Children Aged 18 Months to 18 Years in Kenya and Zimbabwe.

BACKGROUND: Gaps persist in HIV testing for children who were not tested in prevention of mother-to-child HIV transmission programs. Oral mucosal transudate (OMT) rapid HIV tests have been shown to be highly sensitive in adults, but their performance has not been established in children. METHODS: Antiretroviral therapy-naive children aged 18 months to 18 years in Kenya and Zimbabwe were tested for HIV using rapid OraQuick ADVANCE Rapid HIV-1/2 Antibody test on oral fluids (OMT) and blood-based rapid diagnostic testing (BBT). BBT followed Kenyan and Zimbabwean national algorithms. Sensitivity and specificity were calculated using the national algorithms as the reference standard. RESULTS: A total of 1776 children were enrolled; median age was 7.3 years (interquartile range: 4.7-11.6). Among 71 children positive by BBT, all 71 were positive by OMT (sensitivity: 100% [97.5% confidence interval (CI): 94.9% to 100%]). Among the 1705 children negative by BBT, 1703 were negative by OMT (specificity: 99.9% [95% CI: 99.6% to 100.0%]). Due to discrepant BBT and OMT results, 2 children who initially tested BBT-negative and OMT-positive were subsequently confirmed positive within 1 week by further tests. Excluding these 2 children, the sensitivity and specificity of OMT compared with those of BBT were each 100% (97.5% CI: 94.9% to 100% and 99.8% to 100%, respectively). CONCLUSIONS: Compared to national algorithms, OMT did not miss any HIV-positive children. These data suggest that OMTs are valid in this age range. Future research should explore the acceptability and uptake of OMT by caregivers and health workers to increase pediatric HIV testing coverage.

How Is the Caregiver Doing? Capturing Caregivers' Experiences With a Reflective Toolkit.

BACKGROUND: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one. OBJECTIVE: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ. METHODS: A 2-week field study with informal caregivers (N=7) was conducted to evaluate the Co-Care-KIT and to capture their daily personal emotional experiences. The collected data samples were analyzed and used for collaborative dialogue between the researcher and caregiver. RESULTS: The results suggest that the toolkit (1) increased caregivers' awareness of their own well-being through in situ reflection on their experiences; (2) empowered caregivers to share their identities and experiences as a caregiver within their social networks; (3) enabled the capturing of particularly positive experiences; and (4) provided caregivers reassurance with regards to their own mental health. CONCLUSION: By enabling capturing and collaborative reflection, the kit helped to gain a new understanding of caregivers' day-to-day needs and emotional experiences.

Qualitative Analysis of Palliative Care for Pediatric Patients With Cancer at Bugando Medical Center: An Evaluation of Barriers to Providing End-of-Life Care in a Resource-Limited Setting.

Purpose Palliative care remains an urgent, neglected need in the developing world. Global disparities in end-of-life care for children, such as those with advanced cancers, result from barriers that are complex and largely unstudied. This study describes these barriers at Bugando Medical Center, one of three consultant hospitals in Tanzania, to identify areas for palliative care development suitable to this context. Methods In-depth interviews were conducted with 20 caregivers of pediatric patients with cancer and 14 hospital staff involved in pediatric end-of-life care. This was combined with 1 month of participant observation through direct clinical care of terminally ill pediatric patients. Results Data from interviews as well as participant observation revealed several barriers to palliative care: financial, infrastructure, knowledge and cultural (including perceptions of pediatric pain), and communication challenges. Although this study focused on barriers, what also emerged were the unique advantages of end-of-life care in this setting, including community cohesiveness and strong faith background. Conclusion This study provides a unique but focused description of barriers to palliative care common in a low-resource setting, extending beyond resource needs. This multidisciplinary qualitative approach combined interviews with participant observation, providing a deeper understanding of the logistical and cultural challenges in this setting. This new understanding will inform the design of more effective-and more appropriate-palliative care policies for young patients with cancer in the developing world.

The Hidden Curricula of Medical Education: A Scoping Review.

PURPOSE: To analyze the plural definitions and applications of the term "hidden curriculum" within the medical education literature and to propose a conceptual framework for conducting future research on the topic. METHOD: The authors conducted a literature search of nine online databases, seeking articles published on the hidden, informal, or implicit curriculum in medical education prior to March 2017. Two reviewers independently screened articles with set inclusion criteria and performed kappa coefficient tests to evaluate interreviewer reliability. They extracted, coded, and analyzed key data, using grounded theory methodology. RESULTS: The authors uncovered 3,747 articles relating to the hidden curriculum in medical education. Of these, they selected 197 articles for full review. Use of the term "hidden curriculum" has expanded substantially since 2012. U.S. and Canadian medical schools are the focus of two-thirds of the empirical hidden curriculum studies; data from African and South American schools are nearly absent. Few quantitative techniques to measure the hidden curriculum exist. The "hidden curriculum" is understood as a mostly negative concept. Its definition varies widely, but can be understood via four conceptual boundaries: (1) institutional-organizational, (2) interpersonal-social, (3) contextual-cultural, and/or (4) motivational-psychological. CONCLUSIONS: Future medical education researchers should make clear the conceptual boundary or boundaries they are applying to the term "hidden curriculum," move away from general musings on its effects, and focus on specific methods for improving the powerful hidden curriculum.

Long shadow of fear in an epidemic: fearonomic effects of Ebola on the private sector in Nigeria.

BACKGROUND: The already significant impact of the Ebola epidemic on Guinea, Liberia and Sierra Leone, was worsened by a fear of contagion that aggravated the health crisis. However, in contrast to other Ebola-affected countries, Nigeria fared significantly better due to its swift containment of the disease. The objective of our study was to describe the impact of Ebola on the Nigerian private sector. This paper introduces and defines the term fearonomic effect as the direct and indirect economic effects of both misinformation as well as fear-induced aversion behaviour, exhibited by individuals, organisations or countries during an outbreak or an epidemic. METHODS: This study was designed as a cross-sectional mixed-methods study that used semistructured in-depth interviews and a supporting survey to capture the impact of Ebola on the Nigerian private sector after the outbreak. Themes were generated from the interviews on the direct and indirect impact of Ebola on the private sector; the impact of misinformation and fear-based aversion behaviour in the private sector. RESULTS: Our findings reveal that the fearonomic effects of Ebola included health service outages and reduced healthcare usage as a result of misinformation and aversion behaviour by both patients and providers. Although certain sectors (eg, health sector, aviation sector, hospitality sector) in Nigeria were affected more than others, no business was immune to Ebola's fearonomic effects. We describe how sectors expected to prosper during the outbreak (eg, pharmaceuticals), actually suffered due to the changes in consumption patterns and demand shocks. CONCLUSION: In a high-stressor epidemic-like setting, altered consumption behaviour due to distorted disease perception, misinformation and fear can trigger short-term economic cascades that can disproportionately affect businesses and lead to financial insecurity of the poorest and the most vulnerable in a society.

Teaching corner: the prospective case study : a pedagogical innovation for teaching global health ethics.

Over the past decade, global health has emerged as one of the fastest growing academic programs in the United States. Ethics training is cited widely as an essential feature of U.S. global health programs, but generally it is not deeply integrated into the global health teaching and training curricula. A discussion about the pedagogy of teaching global health ethics is long overdue; to date, only a few papers specifically engage with pedagogy rather than competencies or content. This paper explores the value of case study pedagogy for a full-semester graduate course in global health ethics at an American university. I address some of the pedagogical challenges of teaching global health ethics through my innovative use of case study methodology-the "prospective case study" (PSC).