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10 result(s) for "The Role of Social Sciences in Addressing Inequity Related to Neglected Tropical Diseases (NTDs)"
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The role of NGOs in mainstreaming services for podoconiosis into healthcare facilities: the case of two NGOs in Ethiopia
Background Non-Governmental Organizations (NGOs) have played an important role in supporting progress towards the goals of the WHO Neglected Tropical Disease (NTD) Roadmap 2021-30. Several NGOs have shifted from directly delivering NTD services to mainstreaming them to existing health systems. There is little information about the NGOs themselves – their organisational environments and their influence in mainstreaming NTD services and associated challenges. We studied two NGOs that have jointly implemented an intervention to mainstream services for the NTD podoconiosis to local healthcare facilities in rural Ethiopia. Methods We conducted a focused ethnography at the NGOs’ precincts, analysed documents and conducted key informant interviews with staff of the NGOs and a representative of the Ethiopian Ministry of Health. Results The implementation design and the NGOs’ organizational environment were vital in implementing the intervention. The project activities were difficult to sustain within the local healthcare facilities. The NGOs relied too much on individual-level quantifiable short-term outcomes which overshadowed efforts to evaluate their success in institutionalizing activities. The intervention is challenged by lack of funding for NGOs and the limited capacity of local healthcare facilities to continue providing health services. Conclusions Our study revealed that the implementation design and the organizational environments of the NGOs were crucial for implementing the project activities. However, activities were short-lived due to limited resources, overreliance on short term indicators and weak institutionalization within government structures. The challenges underscore the tension between mainstreaming interventions and the realities of the settings in which interventions are put into practice.
Global burden of leishmaniasis, 1990–2021: systematic analysis of the global burden of disease study
Background Leishmaniasis is a neglected tropical disease with significant global public health implications, leading to diverse clinical manifestations. It disproportionately affects impoverished populations in over 90 countries, making it a major health concern worldwide. Methods This study provides a comprehensive analysis of the global burden of leishmaniasis from 1990 to 2021 across 204 countries and territories, using data from the Global Burden of Disease Study 2021. It estimates the disability-adjusted life years (DALYs) associated with leishmaniasis, assessing its impact across different age groups, sexes, and sociodemographic index (SDI) categories. Results The findings show a decline in the global age-standardized DALY rate for visceral leishmaniasis, from 75.73 to 5.39 per 100,000 population (a reduction of 92.9%). However, the DALY rate for cutaneous and mucocutaneous leishmaniasis has increased from 3.86 to 4.88 per 100,000 (a 26.4% rise), particularly in low- and middle-SDI countries. The study also reveals significant sex disparities in occupational risk factors, with men being more vulnerable to environmental and industrial exposures. Additionally, nutritional deficiencies, particularly calcium and zinc deficiencies, are identified as significant global risk factors. Conclusion The results underscore the need for targeted public health interventions, particularly those addressing nutritional deficiencies and occupational exposures. Region-specific health strategies should be developed to account for local risk factors, sex differences, and the varying impacts of environmental and industrial exposures, especially in less developed regions.
Traditional healing and mycetoma management in East Sennar State (Sudan): a qualitative exploration
Background Mycetoma is a neglected tropical disease with significant physical, social, and economic consequences. In Sudan, biomedical services dominate health policy and funding, often marginalising coexisting traditional healing systems. Understanding the interplay between these parallel systems is essential for improving patient outcomes. Objective To explore the role of traditional healers in mycetoma management in Sudan, examine patients’ health-seeking behaviours, and analyse the power dynamics shaping healthcare pathways. Methods We conducted a qualitative study using a critical medical anthropology framework. Data were collected through in-depth interviews, focus group discussions, and environmental observations, including analysis of health promotion materials. Participants included individuals with mycetoma, their families, carers, biomedical practitioners, and traditional healers. Data were thematically analysed to identify patterns in help-seeking, treatment experiences, and inter-system relationships. Results Traditional healers were found to be the first point of contact for most people with mycetoma. Reliance on healers was influenced not only by economic barriers but also by cultural trust, social support, and systemic inequities. Biomedical practitioners frequently perceived healers as a cause of treatment delays, reflecting entrenched power asymmetries between health systems. Health promotion materials reinforced biomedical dominance and contributed to the marginalisation of traditional healing. Patients’ experiences were shaped by both interpersonal and institutional power relations. Conclusions Traditional healers play a crucial role in sustaining access to care for people with mycetoma in Sudan. Effective collaboration between health systems will require addressing the structural and relational power imbalances that currently hinder integration. Recognising traditional healers as healthcare stakeholders is essential for culturally appropriate and equitable health interventions.
Stigma and illness management among podoconiosis patients in rural Ethiopia: an intersectional-hermeneutic study
Background Podoconiosis, a neglected tropical skin disease causing lower-limb lymphedema, disproportionately affects rural populations in low-income countries and has profound physical and psychosocial consequences. Despite its significant impact, the interplay between stigma and illness management in podoconiosis remains under-explored. This study examines the lived experiences of stigma and illness management pathways among patients in rural Ethiopia, highlighting the complex social determinants shaping these processes. Methods Using an intersectional-hermeneutic framework, we conducted in-depth interviews with 21 purposively selected patients representing diverse genders, ages, and disease stages. Data were analysed iteratively following Gadamer’s interpretive approach. Results Three key phases of patients’ journeys emerged from the findings: overlooking initial symptoms; disfigurement, disease re-branding, stigma, and active resistance; and despair and acceptance. These phases demonstrate the dynamic trajectory of stigma and illness management as patients employ varied coping strategies throughout disease progression. The findings reveal significant disparities in stigma experiences and management strategies mediated by intersecting social determinants of health. Conclusion This study advances the understanding of podoconiosis’ complex psychosocial dimensions and offers actionable insights for designing contextually appropriate public health interventions. It underscores the urgent need for targeted interventions to address the root causes of stigma and the barriers to care. Community-based education to dispel misconceptions, improved healthcare accessibility, and culturally adapted support systems could improve care practices and mitigate the multifaceted impacts of podoconiosis on marginalized populations.
Ethnographic study of Buruli ulcer wound management practices in a traditional therapeutic setting in Ghana
Introduction Buruli ulcer (BU) is a skin-related neglected tropical disease (skin NTD) considered to be a disease of the poor. This study explored BU wound management in a traditional therapeutic setting in the Atwima Mponua District of Ghana and described the social interactions observed. Method Ethnographic data about the practices of a herbalist renowned for his experience in treating BU wounds were obtained using direct observations, photography, and informal conversations. Results At this therapeutic setting, we observed wounds cleaned and dressed using gloves, gauze, antiseptic solutions, non-sterile scissors, and a petrol and bark preparation supported with prayers. Most clients of the traditional healer indicated that they experienced their BU as a stubborn wound that needed powerful medicine to cure it, and believed the wounds might have supernatural origins. Key reasons clients provided for seeking care at the traditional therapeutic setting included trust in the traditional healer, his practices, respectful care, a friendly and non-stigmatising environment, low-cost and flexible payment options, and people’s opinions about the potency of traditional plant medicines. Discussion Our findings suggest that the traditional healer enjoyed substantial public legitimacy from his clients due to his perceived interest in helping affected individuals achieve cures using culturally and financially appropriate ways to manage wounds. However, we also observed the use of non-sterile procedures and unregulated preparations, which may be potentially deleterious. The willingness of the traditional healer to collaborate with the formal healthcare system to meet the health needs of people with wounds could form the basis for future collaborative approaches between the two healthcare systems to address inequities regarding clients’ access to care.
Transformations in doctor–patient responsibilities in China’s quasi-marketised healthcare system
Background Following a series of systemic reforms, China’s healthcare system now takes a quasi-marketised form, with an uneasy combination of state regulation and market mechanisms, which has fundamentally reshaped the distribution of responsibilities between doctors and patients. This study employs institutional theory to analyse the institutional factors in shaping the doctor-patient responsibilities within the current healthcare system. Methods This qualitative study involved thematic analysis of semi-structured interviews with 28 doctors and patients from various provinces in China. Participants were purposively selected to reflect diverse experiences across healthcare settings. Thematic analysis was conducted to identify and interpret key patterns within the data. Results Three main dimensions of privatisation emerged from the analysis: accessing healthcare, care coordination, and healthcare financing. Findings indicate that marketisation has significantly increased the responsibilities placed on individual doctors and patients, effectively transferring systemic burdens to these individuals. Doctors face intensified pressures to manage care within fragmented health services, while patients confront greater personal responsibility in navigating access to care, coordinating their treatments, and handling healthcare expenses. Conclusions This study extends the application of institutional theory to the healthcare context. It demonstrates the regulative, normative, and cultural–cognitive dimensions of the healthcare system in shaping and constructing of doctor–patient responsibility. The concept of privatised responsibilities proposed here provides a useful theoretical lens for analysing the effects of quasi-marketisation and offers a foundation for future research on doctor-patient responsibility and accountability in healthcare systems.
Individual identities and stigma inequalities: insights from the experience of people affected by podoconiosis in Rwanda
Introduction Podoconiosis is a Skin Neglected Tropical Disease (SNTD) that affects impoverished individuals in tropical regions. While there is a substantial understanding of the stigma associated with podoconiosis, little is known about the podoconiosis-related stigma experience based on individual identities, such as gender, class, age, location and physical ability. Due to the power differentials associated with these identities, individuals experience health problems differently, resulting in health disparities. This paper aims to discuss the inequalities related to podoconiosis stigma due to individual identities, informing policies and practices to reduce podoconiosis stigma-related disparities. Methods This paper draws on a qualitative research approach to explore how individual identities shape the experience of podoconiosis stigma among affected people. Qualitative methods, including participant observation, interviews, focus group discussions, and key informant interviews with persons affected, family members, community health workers, and representatives, were employed. Data were thematically analysed. Results Our findings reveal the complex nature of podoconiosis stigma-related inequality rooted in individual identities. We identified three main themes: (1) the importance of cultural norms and traditions in shaping social positioning, (2) Uneven stigma experience, and (3) the importance of one’s social positioning in coping with stigma due to podoconiosis. Certain stigmatised individuals or groups face higher levels of stigma than others. Affected individuals are often associated with culturally defined identities. Those with oppressive identities experience significantly more stigma compared to those with positive identities, because of cultural interpretations linked to class, ability, gender, and age. Poor married women and men, young girls, and disabled individuals with podoconiosis encounter greater stigma than their peers. Conclusion This paper illuminates that the podoconiosis stigma inequalities are shaped by individuals’ identities related to gender, age, economic status, and bodily ability. Individuals with oppressive identities endure more stigma than others., and this differential stigma experience enhances the understanding of how disparities in stigma associated with podoconiosis or other SNTDs underpin health inequities. Such insights suggest integrating interventions to reduce podoconiosis stigma with others, such as gender equality education, economic empowerment programs, fostering positive identities and social inclusion, thus reducing disparities.
“It totally depends on the goodwill of the health professional”: health seeking behavior and access to health services among street children infested with scabies in Ethiopia
Background Scabies is a neglected stigmatizing skin disease which is common in resource-limited tropical areas. Due to their living conditions, street children are highly vulnerable to scabies infestation. Efforts to prevent and control scabies rely heavily on access to health services, hygienic conditions, and other aspects of health-seeking behavior of a population. The purpose of this research was to identify the health-seeking behavior of street children and the state of interventions to respond to their health service needs in selected areas of Ethiopia. Methods The study employed an ethnographic design with multiple methods, datasets, and investigators. Data collection methods were: in-depth interviews, key informant interviews, non-participant observations, and FGDs with a drawing exercise in which children were given the opportunity to actively participate. We collected rich qualitative data from street children, parents, government officials, health professionals, and leaders of NGOs working on street children selected through purposive sampling techniques. In addition to taking field notes, audio records were transcribed, translated, and collaboratively coded to identify themes and sub-themes. Results Scabies was a common health problem in all the study sites. The street children lacked awareness about the causes, treatments, and consequences of scabies, shaping their response to their perceived risk and experience of scabies infestation. Low perceived severity of scabies, lack of access to sanitary amenities, the nature of interaction with health professionals, inaccessibility of public health services and lack of money to pay for healthcare contributed to poor primary and secondary health-seeking behavior. Variations in experience of engaging in preventive activities and treatment seeking behavior existed between street children of different sociodemographic characteristics, and regional differences in interventions were identified. Conclusions With the absence of adequate targeted interventions and policy frameworks, responding to the healthcare and other needs of street children infested with scabies remains a highly neglected issue. Identifying street children’s access to healthcare services and the intricacies of policy environments driving morbidity from scabies, this study indicated the important steps that should be taken toward addressing inequity related to a neglected tropical disease.
Barriers to seeking healthcare services and contributing factors to grade 2 disability among women affected by leprosy in Telangana, India – a qualitative study
Background Leprosy, a neglected tropical disease, remains a significant global health issue, with India accounting for nearly 60% of cases in 2022. Untreated Leprosy can result in irreversible disabilities and lead to social stigma, significantly affecting the lives of patients and their families. This study explores the barriers faced by women with leprosy in accessing healthcare and other factors that contributed to the development of Grade 2 disability in India. Methods Qualitative data were gathered through 20 interviews with women affected by leprosy at the Sivananda Rehabilitation Home, a leprosy clinic in Hyderabad, India. An interview guide was developed to conduct semi-structured interviews, specifically regarding the time between the onset of symptoms, diagnosis, and treatment start. An inductive analysis followed by the application of Levesque et al.’s framework was undertaken to identify themes and patterns in the participants’ experiences with the disease and treatment. Results Six key themes were identified. The social environment plays a pivotal role in disease progression, with participants often prioritising societal expectations over their own health, such as being good wives and mothers. Stigmatisation led to social isolation, as many women avoided contact outside their families to hide deformities. Most participants visited several healthcare facilities before receiving a diagnosis, facing financial and emotional burdens. Communication gaps were evident both within healthcare facilities - where companions were sometimes informed before the patient – and in their social environments. Finally, individual factors such as lack of knowledge, awareness, and trust in medical advice also contributed to care-seeking delays. Conclusions This study highlights significant gaps in healthcare access for women with leprosy in India. Family dynamics, societal roles, and stigma delay care, while physical and emotional burdens add to challenges. Communication gaps and limited awareness further reinforce neglect and mistrust. Addressing these barriers is crucial for effective policy and program implementation to reduce the burden of leprosy among women.
Exploring perceptions on vulnerabilities and resilience to scabies among street children: a qualitative study in Ethiopia
Background Scabies is a Neglected Tropical Disease (NTD) and a significant public health concern in resource-limited settings. While the prevalence and burden of scabies in Ethiopia have been well documented among the general population, little attention has been given to the perspectives of street children on their vulnerability to this condition. This study aims to explore street children’s views on their perceived susceptibility to scabies, the role of gender in this vulnerability, and their resilience strategies. Methods A qualitative ethnographic study was conducted from March to May 2024 across three Ethiopian cities: Addis Ababa, Hawassa, and Adama. Data were collected through in-depth interviews (IDIs), participatory group discussions (PGDs), key informant interviews (KIIs), and non-participant observations. To ensure diverse representation of informants, a purposive sampling approach was used to recruit 66 street children, 15 parents, and 15 key informants. Thematic analysis was employed to analyze and interpret the data. Findings : Although some street children could describe typical scabies symptoms, the study uncovered widespread misconceptions and limited understanding of the causes and prevention of the disease. Many children viewed scabies as contagious and linked to poor personal hygiene, but did not mention mites as agents, and considered scabies an inevitable consequence of street life. Participants believed scabies was prevalent among street children due to overcrowding, and close contact with infected peers. Male street children reported higher perceived vulnerability than their female counterparts, attributing this to differences in working conditions, access to hygiene facilities, and societal attitudes. Peer support networks, support from charities, and personal resilience were seen as key factors in coping with the condition. Conclusions Peer-led, integrated health education interventions are crucial in reducing street children’s vulnerability to scabies. These efforts should actively engage street children and their support networks. Additionally, gender-specific interventions should be developed to address the unique vulnerabilities of male and female street children, tailoring health communication accordingly.