Over 25 Years of Hope: Development of Lymphatic Filariasis Patient Support Groups in Haiti.

Support groups can create environments that are conducive to healing and well-being, particularly for persons with stigmatizing chronic diseases. In 1998, the support group concept was adapted in Haiti for persons with disabling lymphedema caused by lymphatic filariasis (LF). The project was developed with the expectation that the support group model conceived in the developed world be interpreted and modified by persons affected with lymphedema in the Haitian setting. Initiated with modest financial support within a research initiative to eliminate LF, a total of 50 "Hope Clubs" were formed from 1998 to 2023 across seven communes (districts) located in 3 of Haiti's 10 regional Departments. Documented benefits of the support groups included improved limb self-care, decreased incidence of inflammatory episodes (adenolymphangitis), enhanced self-efficacy, economic benefit through microenterprise, and improved quality of life. Despite challenges of funding shortfalls, natural disasters, and political insecurity, persistence of LF support groups in Haiti highlights the crucial role of group ownership by affected persons and the freedom to reinvent the support group concept in light of local social, cultural, and economic conditions.

Cascading failures in COVID-19 vaccine equity.

Ethical analysis should encompass upstream decisions and their downstream consequences.

Epidemiology of compassion: A literature review.

Psychology and neuroscience have contributed significantly to advances in understanding compassion. In contrast, little attention has been given to the epidemiology of compassion. The human experience of compassion is heterogeneous with respect to time, place, and person. Therefore, compassion has an epidemiology, although little is known about the factors that account for spatial or temporal clustering of compassion or how these factors might be harnessed to promote and realize a more compassionate world. We reviewed the scientific literature to describe what is known about "risk factors" for compassion towards others. Studies were included if they used quantitative methods, treated compassion as an outcome, and used measures of compassion that included elements of empathy and action to alleviate suffering. Eighty-two studies met the inclusion criteria; 89 potential risk factors were tested 418 times for association with compassion. Significant associations with compassion were found for individual demographic factors (e.g., gender, religious faith); personal characteristics (e.g., emotional intelligence, perspective-taking, secure attachment); personal experience (e.g., previous adversity); behaviors (e.g., church attendance); circumstantial factors during the compassion encounter (e.g., perceptions of suffering severity, relational proximity of the compassion-giver and -receiver, emotional state of the compassion-giver); and organizational features. Few studies explored the capacity to receive, rather than give, compassion. Definitions and measures of compassion varied widely across disciplines; 87% of studies used self-report measures and 39% used a cross-sectional design. Ten randomized clinical trials documented the effectiveness of compassion training. From an epidemiologic perspective, most studies treated compassion as an individual host factor rather than as transmissible or influenced by time or the environment. The causal pathways leading from suffering to a compassionate response appear to be non-linear and complex. A variety of factors (acting as effect modifiers) appear to be permissive of-or essential for-the arising of compassion in certain settings or specific populations. Future epidemiologic research on compassion should take into account contextual and environmental factors and should elucidate compassion-related dynamics within organizations and human systems. Such research should be informed by a range of epidemiologic tools and methods, as well as insights from other scientific disciplines and spiritual and religious traditions.

Photovoice Lessons from a Peruvian Program in Combatting Stigma for Caregivers of Children with Disabilities.

BACKGROUND: Access to resources for children with disabilities and their caregivers are lacking worldwide, especially for low-and middle-income countries, especially those of Latin origin. Furthermore, decreased social visibility coupled with minimal support available for caregivers can negatively affect their overall mental well-being. Limited community-based participatory research has been done to understand the experiences of caregivers and identify effective measures of support. OBJECTIVES: To explore the impact of childhood disabilities on caregiver well-being and to assess how interactions between caregivers and their community affect their mental well-being. METHODS: This study used photovoice and community-based participatory research methodology. We recruited participants who had children enrolled in a rehabilitative program called Rehabilitation with Hope, located in Huancayo, Peru. Participants were given three photo assignments concerning their experiences as caregivers and they presented their photos at photo discussions after each assignment. We used thematic analysis to identify the main themes that arose from the discussions. RESULTS: Four main themes were identified: stigma, social support, self-esteem, and effects of photovoice. Caregivers often felt stigmatized by the community due to their child's disability. However, they found a stronger sense of social support and overall improved sense of self-esteem through the program and participation in photovoice. CONCLUSIONS: The results of this study suggest the effects of stigma on caregivers may be mitigated through enhanced social support and self-esteem. Additionally, photovoice is an effective tool to combat community stigma by allowing caregivers to share their narratives.

Safety of integrated preventive chemotherapy for neglected tropical diseases.

BACKGROUND: Preventive chemotherapy (PC) is a central strategy for control and elimination of neglected tropical diseases (NTDs). Increased emphasis has been given to "integration" of NTD programs within health systems and coadministration of NTD drugs offers significant programmatic benefits. Guidance from the World Health Organization (WHO) reflects current evidence for safe drug coadministration and highlights measures to prevent choking of young children during PC. METHODOLOGY: To understand how coadministration of NTD drugs might affect PC safety, we reviewed literature on choking risk in young children and safety of coadministered NTD drugs. To understand current practices of drug coadministration, we surveyed 15 NTD program managers and implementing partners. PRINCIPAL FINDINGS: In high-income countries, choking on medication is an infrequent cause of death in young children. In low-resource settings, data are limited, but age-appropriate drug formulations are less available. During PC, fatal choking, although infrequent, occurs primarily in young children; forcing them to swallow tablets appears to be the major risk factor. The WHO currently recommends 6 drugs and 5 possible drug combinations for use in PC. Of 105 nations endemic for the 5 PC-NTDs, 72 (68.6%) are co-endemic for 2 or more diseases and could benefit from drug coadministration during PC. All 15 survey respondents reported coadministering medications during PC. Reported responses to a child refusing to take medicine included: not forcing the child to do so (60.0%), encouraging the child (46.7%), bringing the child back later (26.7%), offering powder for oral suspension (POS) for azithromycin (13.3%), and having parents or community members intervene to calm the child (6.7%). CONCLUSIONS: Coadministration of NTD drugs during PC appears to be increasingly common. Safety of coadministered PC drugs requires attention to choking prevention, use of approved drug combinations, and increased access to age-appropriate drug formulations.

Ethical challenges and moral distress among field epidemiologists.

BACKGROUND: As 'disease detectives' and directors of public health programs, field epidemiologists play essential roles in protecting public health. Although ethical issues receive considerable attention in medical and research settings, less is known about ethical challenges faced by field epidemiologists in public health programs. Similarly, little is known about moral distress among field epidemiologists, i.e., situations in which they are constrained from acting on what they know to be morally right. Moral distress is strongly associated with empathy fatigue, burnout, reduced job retention, and disengagement. To better understand ethics training needs for field epidemiologists, in February 2019, members of TEPHIConnect, an online and mobile networking platform for Field Epidemiology Training Program (FETP) alumni, were invited to participate in an anonymous survey about ethical challenges and moral distress. RESULTS: Among 126 respondents from 54 countries, leading causes of ethical dilemmas included inadequate informed consent (61%), inequitable allocation of resources (49%), and conflicts of interest (43%). These occur primarily in settings of disease outbreaks (60%); research (55%); and public health programs at the state, province, or national level (45%) or community level (43%). Work-related moral distress was reported by 91% of respondents, including 26% who experience it "frequently" or "almost always." Field epidemiologists working in low- and low-middle income countries were more likely to report moral distress "frequently" or "almost always" than those in higher-income countries (33.0% vs 9.1%, P = 0.006). The most common perceived contributors to moral distress included excessive stress and work demands (30%) and inadequate support from leaders (25%). CONCLUSIONS: Field epidemiologists face significant work-related ethical challenges, which are endemic to public health and political systems. A substantial proportion of field epidemiologists also experience some degree of moral distress, often in association with these challenges. These findings indicate an unmet need among field epidemiologists for support in navigating ethical challenges, as well as for resources to address the human and professional consequences of moral distress.

An observational assessment of the safety of mass drug administration for trachoma in Ethiopian children.

BACKGROUND: The International Trachoma Initiative (ITI) provides azithromycin for mass drug administration (MDA) to eliminate trachoma as a public health problem. Azithromycin is given as tablets for adults and powder for oral suspension (POS) is recommended for children aged <7 y, children <120 cm in height (regardless of age) or anyone who reports difficulty in swallowing tablets. An observational assessment of MDA for trachoma was conducted to determine the frequency with which children aged 6 mo through 14 y received the recommended dose and form of azithromycin according to current dosing guidelines and to assess risk factors for choking and adverse swallowing events (ASEs). METHODS: MDA was observed in three regions of Ethiopia and data were collected on azithromycin administration and ASEs. RESULTS: A total of 6477 azithromycin administrations were observed; 97.9% of children received the exact recommended dose. Of children aged 6 mo to <7 y or <120 cm in height, 99.6% received POS. One child experienced choking and 132 (2%) experienced ≥1 ASEs. Factors significantly associated with ASEs included age 6-11 mo or 1-6 y, non-calm demeanor and requiring coaxing prior to drug administration. CONCLUSIONS: There is a high level of adherence to the revised azithromycin dosing guidelines and low incidence of choking and ASEs.

A mixed-methods exploration into the resilience of community drug distributors conducting mass drug administration for preventive chemotherapy of lymphatic filariasis and onchocerciasis in Côte d'Ivoire and Uganda.

Volunteer community drug distributors (CDDs) have been vital to progress made in the elimination of onchocerciasis and lymphatic filariasis; two neglected tropical diseases amenable to preventive chemotherapy (PC-NTDs). However, formative work in Côte d'Ivoire and Uganda revealed that CDDs can encounter considerable challenges during mass drug administration (MDA). CDDs must be resilient to overcome these challenges, yet little is known about their resilience. This mixed-methods study explored the resilience of CDDs in Côte d'Ivoire and Uganda. The characteristics and experiences of 248 CDDs involved in the 2018 MDAs in Côte d'Ivoire (N = 132) and Uganda (N = 116) were assessed using a micronarrative survey. Thematic analysis of CDDs' micronarratives was used to identify challenges they encountered during MDA. Resilience was assessed using the Connor-Davidson Resilience Scale 25 (CD-RISC-25). Variables from the micronarrative survey found to be individually associated with mean CD-RISC-25 score (P<0.05) through bivariate analyses were included in a multiple linear regression model. Post-hoc, country-specific analyses were then conducted. Thematic analysis showed that CDDs encountered a wide range of challenges during MDA. The aggregate model revealed that CDDs who had positive relationships or received support from their communities scored higher on the CD-RISC-25 on average (P<0.001 for both), indicating higher resilience. These trends were also observed in the country-specific analyses. Mean CD-RISC-25 scores were unaffected by variations in district, age, gender, and length of involvement with the NTD program. Community support during MDA and positive community-CDD relationships appear to be associated with CDDs' personal capacity to overcome adversity. Involving communities and community leadership in the selection and support of CDDs has the potential to benefit their well-being. This study establishes the CD-RISC-25 as a useful tool for assessing the resilience of CDDs. Further research is needed to understand, promote, and support the resilience of this valuable health workforce, upon which NTD programs depend.