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BACKGROUND: Leprosy reactions (LR) are immune-mediated complications of leprosy that may be associated with severe and irreversible nerve damage. Non-medical aspects, such as financing, service provision, and healthcare resources in the management of LR are generally overlooked as studies tend to concentrate on clinical features and treatment. Barriers to accessing care and services are a major cause of suboptimal care for people with leprosy. This study aims to explore the barriers to and facilitators of high-quality care and management of LR in two leprosy-endemic countries with different health care models - Indonesia and India - and identify areas for improvement. METHODS: A socio-ecological model was adopted. Data were obtained from 66 interviews with individuals who experienced LR and were seeking care at the two study sites. In addition, immediate family members of individuals with LR and healthcare workers attending to people with leprosy participated in seven focus group discussions (FGDs). RESULTS: This study highlights the significant impact of public health insurance regulations and uptake at the macrosystem level on the provision of healthcare services, clinical decision-making, care expenditure, and the psychological well-being of individuals with LR in Indonesia and India. Lack of specialized health professionals and communication challenges were identified in both study populations. Indonesian participants encounter additional challenges due to a fragmented information system and drug shortages. This study identifies key facilitators in providing high-quality care for LR-affected individuals, including financial assistance, availability of corticosteroid alternatives, timely provision of care, and counselling. It found that the high coverage of public health insurance cards in the Indonesian model has increased access to care among individuals affected by LR, despite the challenges. Conversely, the Indian model of care offers treatment subsidies. The advantage of the Indonesian model is its ability to provide wider access to high-quality care, whereas the Indian model focuses on those in most need. This study emphasizes the importance of addressing these challenges through improved communication strategies, education aimed at the affected individuals, and accessible medical care. Furthermore, variations in care-seeking behaviour and self-care practices were observed in both sites, underscoring the need for culturally sensitive and comprehensive approaches to the management of LR. CONCLUSION: The study findings demonstrate that the factors identified at the four systemic levels are interrelated and have an impact on the access, acceptability, and management of LR services. Despite its accessibility and wider coverage of public health insurance, the integrated service model in Indonesia faces challenges associated with complex regulations and the availability of medication. India's care model offers intensive, specialised care but has difficulties in ensuring sufficient health personnel, resources, and public health insurance coverage. These findings highlight the need to address these challenges to ensure timely, effective, and comprehensive care for individuals with LR.
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Grupos Focais , Pessoal de Saúde , Acessibilidade aos Serviços de Saúde , Hanseníase , Humanos , Índia , Indonésia , Hanseníase/terapia , Hanseníase/psicologia , Masculino , Feminino , Adulto , Pessoal de Saúde/psicologia , Pessoa de Meia-Idade , Família/psicologia , Pesquisa Qualitativa , Entrevistas como Assunto , Qualidade da Assistência à SaúdeRESUMO
INTRODUCTION: Leprosy is a curable disease, treated by multidrug therapy. However, patients are often left with neuropathic damage leading to lifelong vulnerability to ulcers. Quantifying the value of interventions to improve ulcer healing is challenging as data on the health impact of plantar ulcers are scarce, especially in low- and middle-income countries. We aim to quantify the impact of plantar ulcers on patients' health-related quality of life (HRQoL) using methods which can inform decisions about the effectiveness and cost-effectiveness of alternative forms of management. METHODS: Generic HRQoL data were collected using the EuroQol (EQ)-5D-3L questionnaire in a randomised control trial in Nepal, treating plantar ulcers with leukocyte and platelet-rich fibrin or usual care. The trial followed 130 patients resulting in 600 observations. EQ-5D data were converted into a single 'utility' score by weighting the instrument's different dimensions using the preferences of the Sri Lankan population. Utility data were analysed using general estimating equation regressions. The impact of an ulcer on HRQoL was estimated whilst controlling for clinical and demographic covariables. RESULTS: Estimated mean utility (standard error) for the sample across all time points was 0.52 (0.02) for patients with an ulcer and 0.64 (0.01) with a healed ulcer. Controlling for clinical and demographic covariates, we estimate that the presence of an ulcer leads to a 0.12 (0.02) decrement in HRQoL compared with a healed ulcer. DISCUSSION: Based on the levels of health they report and the values of the general public, patients with a history of leprosy are at risk of significant HRQoL burden from neuropathic plantar ulcers. Quantifying this health impact provides important evidence to assess the effectiveness and cost-effectiveness of leprosy ulcer interventions and ensures that interventions for leprosy ulcers can be appropriately considered for funding under Universal Health Coverage against other potential uses of the same money.
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Úlcera do Pé , Hanseníase , Qualidade de Vida , Humanos , Nepal , Masculino , Hanseníase/complicações , Hanseníase/psicologia , Feminino , Úlcera do Pé/terapia , Pessoa de Meia-Idade , Adulto , Inquéritos e Questionários , Análise Custo-BenefícioRESUMO
BACKGROUND: Leprosy, being a neglected tropical disease, remains a significant public health concern in several parts of the world, especially Sri Lanka, where it has long been associated with stigma. This study aims to assess the stigma faced by People Affected by Leprosy (PAL) undergoing treatment and to identify the factors associated with this stigma. METHODS: A cross-sectional study was conducted among 109 Leprosy affected people attending the Central Leprosy Clinic and all dermatology clinics of the National Hospital of Sri Lanka (Colombo), selected using a consecutive sampling method. Data collection was done through an interviewer-administered questionnaire. Stigma was quantified using a validated and adapted version of the Stigma Assessment and Reduction of Impact (SARI) tool, which evaluates stigma pertaining to four domains: Experienced Stigma (ES), Disclosure Concerns (DC), Internalized Stigma (IS), and Anticipated Stigma (AS). Spearman's correlation and Mann-Whitney U tests were used to analyze associations, with statistical significance set at 0.05. RESULTS: The dataset showed a non-normal, right-skewed distribution. The mean total SARI score was 9.82 (SD = 10.23). Disclosure Concerns (rs=-2.66; p = 0.005) and Anticipated Stigma (rs=-3.6; p < 0.001) demonstrated weak - moderate negative correlations with the time since diagnosis. On the other hand, the correlation between time since diagnosis and Experienced Stigma (rs=0.22; p = 0.022) was positive and weak. Participants without disability had significantly lower scores in DC (p = 0.049), IS (p = 0.01), and AS (p = 0.01) compared to those with disability. Patients who did not develop Leprosy reactions displayed significantly lower scores across all SARI domains as well as the total SARI score (all p < 0.05) compared to those who did. CONCLUSIONS: The findings suggest that over time, People Affected by Leprosy become less concerned about disclosing their diagnosis and anticipate less stigma but may experience greater overall stigma. Disability status and Leprosy reactions are key factors in determining the level of stigma faced by them.
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Hanseníase , Estigma Social , Humanos , Hanseníase/psicologia , Sri Lanka , Estudos Transversais , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem , Idoso , AdolescenteRESUMO
BACKGROUND: People with disabilities due to neglected tropical diseases (NTDs), such as leprosy and lymphatic filariasis (LF), often encounter situations of stigma and discrimination that significantly impact their mental wellbeing. Mental wellbeing services are often not available at the peripheral level in NTD-endemic countries, and there is a need for such services. Basic psychological support for persons with NTDs (BPS-N) from peers is an important potential solution for addressing mental wellbeing problems. As there was no written document advising delivery of such support, NLR India brought experts together to develop a new guide. This paper describes the process used in developing the guide and provides information about its content. METHODS: As a qualitative and participatory methodology, more than 10 meetings and workshops were held to consider the suitability of existing guides for chronic stress in NTDs and develop a new guide through consensus and adaptations; attendees included both technical experts and affected persons. The first meeting was a 3-day virtual workshop held on 9-11 June 2020, followed by other online meetings. The BPS-N guide development happened during the COVID-19 lockdowns. The Psychological First Aid (PFA) package of WHO was selected as a suitable basic model for adaptation. Aspects of the Rights-Based Counselling intervention were also integrated into the new guide. Two teams were formed for drafting and reviewing the guide. RESULTS: All suggested changes were discussed, and a consensus reached for developing the document. The affected persons contextualized the content for ensuring its relevance and practicality. The new BPS-N guide was simple, professionally sound, ethical, adequate, and appropriate. The guide promotes knowledge, skills, compassion, and action among peer supporters. CONCLUSION: The new guide, through regular trainings, behavior change, and action principles will likely provide much-needed services. It is important that the new guide be now tested, and modifications made if needed.
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Filariose Linfática , Hanseníase , Doenças Negligenciadas , Grupo Associado , Humanos , Hanseníase/diagnóstico , Hanseníase/psicologia , Filariose Linfática/psicologia , Filariose Linfática/diagnóstico , Doenças Negligenciadas/diagnóstico , Estigma Social , Índia , Medicina TropicalRESUMO
BACKGROUND: Recent epidemiological data shows significant rates of grade 2 disability at point-of-diagnosis among new leprosy cases in Pakistan. This indicates a feature of extensive diagnostic delay; the disability burden appears unmoving and disproportionate to the falling leprosy incidence rates. Therefore, this study was required to understand reasons for delay in diagnosis and treatment of leprosy. METHODS: A qualitative design of 7 semi-structured interviews was employed to reveal perceptions and understandings of various leprosy stakeholders in Pakistan, termed "leprosy experts". Subsequent inductive analysis was used to identify themes and subthemes concerned with delay in the diagnosis and treatment of leprosy. RESULTS: Leprosy experts identified three main areas, or domains, to which delay can be attributed: 1. Awareness and beliefs about leprosy, within the general population, 2. Knowledge and clinical experience of leprosy, among healthcare professionals, 3. Leprosy control program infrastructure, allocation of resources and institutional funding. These domains were each viewed as consequent to the larger theme of 'low-endemicity'. Strong correlations between diagnostic delay and socioeconomic status, gender, geography and health system challenges, were also mentioned, and which intersected the three major themes. CONCLUSION: Reasons for diagnostic delay are evident in all tiers of the healthcare hierarchy in Pakistan. Thus, an approach at multiple levels is justified, to improve the general awareness of leprosy, education of healthcare professionals, and organizational structuring. Additionally, cultural features relevant to different communities in Pakistan which might be different from other care access frameworks demonstrated a need for further study into the health beliefs of Pakistani patients in a wide range of communities.
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Diagnóstico Tardio , Conhecimentos, Atitudes e Prática em Saúde , Hanseníase , Humanos , Hanseníase/diagnóstico , Hanseníase/epidemiologia , Paquistão/epidemiologia , Feminino , Masculino , Pesquisa Qualitativa , Entrevistas como Assunto , Pessoal de Saúde/psicologia , AdultoRESUMO
Background Chronic skin conditions are different from internal illnesses since they are often immediately visible to others. Patients feel self-conscious and often go through depression, anxiety, fear of stigma and a substantial psychological, social and economic impact. It is crucial for healthcare professionals to gather information about various strategies and psychosocial interventions that can be used to manage psychological distress associated with skin conditions and avoid it from being neglected amidst other health conditions. Mindful Self-Compassion (MSC) can be used for this. It is a resource-building mindfulness-based self-compassion training programme that uses a combination of personal development training and psychotherapy designed to enhance one's capacity for self-compassion by cultivating spacious awareness as a basis for compassionate action. Aims This study examined the impact of mindful self-compassion on depression, anxiety, stress, dermatology-specific quality of life, self-esteem and well-being in a sample of 88 adults aged 18-55 years suffering from chronic skin conditions. Methods This study used an experimental waitlist control design. Participants were recruited from two skin clinics using purposive sampling in Mumbai, Maharashtra. Pre-test data was collected through self-reported questionnaires on psychological distress, dermatology-specific quality of life, self-esteem and well-being. Participants who were experiencing psychological distress were randomly assigned to either the experimental or waitlist control group. The intervention named 'mindful self-compassion' was delivered through an online platform, twice a week, over a period of 4 weeks. Post-test data was collected later on all variables. Results ANCOVA was utilised where pre-test scores were used as covariates. Differences in pre-test and post-test scores between the intervention group and waitlist control group for depression, anxiety, stress, dermatology-specific quality of life, self-esteem and well-being were analysed. Participants in the intervention group were found to have lower levels of depression, anxiety and stress as compared to the waitlist control group and also had enhanced levels of self-esteem, well-being and dermatological quality of life. These differences were found to be statistically significant (p < 0.001). Limitations The sample reflected heterogenous skin conditions, not a specific skin condition. The study was quantitative in nature, and we could not use any qualitative methods to assess the subjective experience of participants. Due to time constraints, follow-up data could not be gathered from participants to assess long-term effects on participants. Conclusion Mindful self-compassion can be effectively used to manage psychological distress in skin conditions. Dermatologists can become acquainted with basic signs of mental distress and the importance of psychological interventions. By collaborating with mental health professionals, patients can be given holistic treatment.
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Empatia , Atenção Plena , Angústia Psicológica , Autoimagem , Dermatopatias , Humanos , Adulto , Feminino , Masculino , Atenção Plena/métodos , Pessoa de Meia-Idade , Dermatopatias/psicologia , Dermatopatias/terapia , Adulto Jovem , Adolescente , Qualidade de Vida/psicologia , Estresse Psicológico/psicologia , Estresse Psicológico/terapia , Intervenção Baseada em Internet , Depressão/psicologia , Depressão/terapia , Ansiedade/psicologia , Ansiedade/terapiaRESUMO
Community engagement has emerged as a critical component in the effective control and elimination of neglected tropical diseases (NTDs), particularly in regions with persistent stigma and limited healthcare access. Drawing on case studies from Brazil, India, and Nigeria, this opinion piece explores how community-driven initiatives have successfully improved leprosy awareness, reduced stigma, and fostered early case detection and treatment adherence. The importance of culturally sensitive, inclusive approaches in health education and stigma reduction campaigns is highlighted, emphasizing the potential for community engagement to enhance national leprosy programs and contribute to the World Health Organization's Zero Leprosy Strategy. By examining these examples, this article illustrates how integrating community participation into leprosy control and elimination programs can drive sustainable outcomes for achieving Zero Leprosy, even in resource-limited settings.
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Introduction Contemporary medical science has been using fat grafting in aesthetic and reconstructive procedures, consistently achieving successful outcomes. Hansen's disease, caused by Mycobacterium leprae , leads to hand deformities due to peripheral neuropathy, resulting in soft-tissue atrophy, volume loss, and compromised hand function. Tendon transfer surgery is a common remedy for functionality, but it often does not address aesthetic concerns and the patient's psychological impact of living with an atrophic hand. Autologous fat grafting can effectively address these concerns. Materials and Methods This prospective study evaluates the efficacy of fat grafting for hand rejuvenation in patients with Hansen's disease posttendon transfer surgery, focusing on aesthetic and psychological outcomes. We recorded data from 12 patients who underwent the procedure between 2015 and 2024. Using the Coleman technique, fat was harvested from the paraumbilical region of the abdomen and injected into various hand regions. Results Autologous fat grafting showed high patient satisfaction with significant improvements in hand contour, skin texture, and psychological health. The benefits of the procedure included improved self-esteem, enhanced quality of life, reduced social stigma, and psychological well-being. Conclusion Autologous fat grafting is a safe and effective technique for hand rejuvenation in patients with Hansen's disease, after functional treatment addressing both physical deformities and their psychological impacts. It could be considered one of the components in the comprehensive management of Hansen's disease-related hand deformities, significantly enhancing patients' overall quality of life.
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BACKGROUND: It is known that leprosy is a socially determined disease, but most studies using spatial analysis have not considered the vulnerabilities present in these territories. OBJECTIVES: To measure the association between social vulnerability and the burden of leprosy in the urban space of Cuiabá. METHODS: Ecological study, carried out in Cuiabá, Brazil. Diagnosed cases of leprosy were surveyed through the Notifiable Diseases Information System, from 2008 to 2018. The spatial scan statistics technique of leprosy cases per each Human Development Unit was applied. Social vulnerability was measured based on the Municipal Human Development Index (MHDI), education level and average per capita income. For the spatial correlation between vulnerability and leprosy, Global and local bivariate Moran's index was used. RESULTS: 8389 cases of leprosy were georeferenced, the majority being male (58%), 30% of cases were not evaluated for degree of physical disability. One of the spatial scan clusters had a relative risk (RR) of 6.93 (95% CI 6.49-7.4), and another had 1360 cases with RR 1.71 (95% CI 1.62-1.82). The bivariate global autocorrelation of Moran's index for MHDI was 0.579, observing 1 High-High in the East region and 1 in South, for education the index was 0.429, 2 High-High in the East and 1 in the South, and 0.145 for average per capita income, 1 High-High in the East. CONCLUSION: There was a spatial association between leprosy cases and territories with low MHDI, having a percentage of the population without schooling and/or with low income. The study advances knowledge by presenting characteristics of territories most affected by leprosy, verifying the spatial correlation of the disease with the recurrent socioeconomic characteristics in these territories.
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Background & objectives Although multi-drug therapy has decreased the burden of disease, leprosy is yet to be eliminated. Accelerating progress requires optimal use of existing tools, advanced diagnostic tests, newer drugs, and vaccines. The search for a vaccine with therapeutic and preventive potential is ongoing, but evidence on effectiveness and safety is lacking. This systematic review and meta-analysis will evaluate and compare the clinical efficacy, immunogenicity, and safety of leprosy vaccines in humans. Methods In June 2024, three databases were systematically searched with updated search keywords. Randomized controlled trials (RCTs) pertaining to leprosy vaccines for humans which evaluated either therapeutic or prophylactic vaccines in leprosy with a placebo or active comparator arm, with full-text access, were included in the study. There were no restrictions on language, country or date. For the risk of bias assessment in the studies included, the revised Cochrane risk-of-bias 2 tool for RCTs was used. A P value (two-sided) of <0.05 was considered as significant for all tests; however for heterogeneity, a one-sided P value of <0.1 was considered as statistically significant. The quality of generated evidence specific to the desired outcomes were assessed using the GRADE approach (Grading of Recommendations Assessment, Development and Evaluation). The study protocol was registered in PROSPERO (ID: CRD42024561651). Results A total of 2163 studies were retrieved from different databases. After removing duplicates and full text screening, 12 articles were finally selected. Out of these studies, eight used leprosy vaccines on prophylactic basis, while four used leprosy vaccines on therapeutic basis. In therapeutic use of leprosy vaccine, Ramu's score was found to be significantly protective [-3.06 (95% confidence interval (CI): -3.96 to -2.16)] among the recipients of the therapeutic leprosy vaccine. Bacterial index was found to be insignificant [-0.26 (95% CI: -1.54 to 1.03)] among the recipients of therapeutic leprosy vaccine. In subgroup analysis among the eight prophylactic vaccine studies, pooled relative risk was found to be 0.61 (95% CI: 0.41 - 0.91). Interpretation & conclusions The findings of this meta-analysis suggest that both prophylactic and therapeutic leprosy vaccines were significantly better compared to the placebo. Leprosy vaccine in the form of Mw/Mycobacterium welchii/MIP along with combination of World Health Organization (WHO) multi-drug therapy (MDT) or Bacillus Calmette-Guerin (BCG) vaccine along with second line treatment with rifampicin were found to be protective among the recipients.
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Hanseníase , Ensaios Clínicos Controlados Aleatórios como Assunto , Humanos , Hanseníase/prevenção & controle , Hanseníase/epidemiologia , Hanseníase/imunologia , Hanseníase/tratamento farmacológico , Mycobacterium leprae/imunologia , Mycobacterium leprae/efeitos dos fármacos , Mycobacterium leprae/patogenicidade , Vacinas Bacterianas/uso terapêutico , Vacinas Bacterianas/imunologiaRESUMO
BACKGROUND: Stigma experienced by people with infectious diseases impedes access to care, leading to adverse psychosocial consequences. Community-based interventions could prevent or mitigate these consequences but lack robust evidence. This scoping review aimed to identify and critically appraise community-based psychosocial support interventions to reduce stigma and improve mental health for people affected by stigmatizing infectious diseases including tuberculosis (TB), HIV/AIDS, and leprosy. METHODS: This was a scoping review of literature indexed in PubMed, Web of Science, Elton B. Stephens Company (EBSCO) database, as well as reports in the World Health Organization repository, published from January 2000 to June 2023. We included research articles and reports addressing stigma and mental health disorders among individuals with TB, HIV/AIDS, or leprosy and/or their household members in low- and middle-income and/or high TB burden countries. We extracted information regarding types of psychosocial interventions and their reported impact on health and psychosocial indicators. RESULTS: Thirty studies were included in this review: 21 (70%) related to HIV/AIDS, seven (23%) leprosy, and two (7%) TB. Of these, eleven were quantitative studies, nine qualitative, and ten mixed-methods. Eleven community-based interventions were reported to reduce infectious disease-related stigma, predominantly internalized and enacted stigma, and improve adherence to medication, quality of life, health-related knowledge, depression symptoms, and psychosocial wellbeing. Most studies involved lay people in the community as supporters of those affected. The predominant reported mechanism of intervention effect was the ability of supporters to enable those affected to feel seen and listened to, to accept their diagnosis, to improve their self-esteem, and to facilitate continuation of their daily lives, and thereby reducing anticipated stigma, self-stigma, and mental illness. Adequate training for lay people was reported to be essential to ensure success of interventions. CONCLUSIONS: This review identified a paucity of high-quality evidence relating to community-based interventions to reduce stigma for infectious diseases. However, such interventions have been reported to reduce stigma and improve mental health among people with HIV/AIDS, leprosy, and TB. Engaging affected communities and peers, through the conception, planning, training, implementation, and evaluation phases, was reported to be essential to optimise intervention uptake, impact, and sustainability.
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Saúde Mental , Intervenção Psicossocial , Estigma Social , Humanos , Doenças Transmissíveis/psicologia , Infecções por HIV/psicologia , Hanseníase/psicologia , Intervenção Psicossocial/métodos , Sistemas de Apoio Psicossocial , Tuberculose/psicologiaRESUMO
BACKGROUND: Hansen's disease is an infectious disease with a slow and chronic evolution that can manifest itself through skin lesions, with changes in thermal, painful and tactile sensitivity, and also affect peripheral nerves, causing significant physical disabilities. This study aimed to analyze the meanings and senses for health workers from outpatient services who provide care to people diagnosed with Hansen's disease. METHODS: This is an exploratory qualitative study that used the Vygotskian theoretical-methodological framework based on the dimension of historical-dialectic materialism that bases its procedures on the use of meaning cores. The study was carried out in Ribeirão Preto, in the inland state of São Paulo, Brazil. In total, 13 health professionals participated in the study, including two nurses, three physicians, five nursing assistants, a physiotherapist and two social workers. RESULTS: To understand the meanings and senses of Hansen's disease, we take three cores of meaning as a basis: (1) personal, professional and social aspects of health workers and Hansen's disease, the health workers report that their view of what Hansen's disease was based on the understanding that it was an infectious disease that caused deformities, known as "leprosy", and that those affected needed to be isolated; (2) Hansen's disease - neglected, invisible and unknown, the invisibility of Hansen's disease continues to haunt those affected by it, and diagnosis is still late, referring to the marks carried in the history of Hansen's disease that remain today; and (3) challenges and potential in the world of work in the Hansen's disease reference services, the dichotomies, challenges and potential of working with those affected by Hansen's disease are linked to the creation of bonds, love for the profession, religious beliefs and problems related to the lack of resources for the rehabilitation of those affected. CONCLUSIONS: The re-elaboration of meaning can occur when professionals are inserted in the world of work. The socially produced senses and meanings surrounding leprosy are related to its invisibility and late diagnosis. Changing the meanings and senses requires mediation and the use of critical active methodologies in health education, with investments from training bodies, social movements and health services.
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Hanseníase , Pesquisa Qualitativa , Hanseníase/psicologia , Humanos , Brasil , Masculino , Feminino , Pessoal de Saúde/psicologia , Adulto , Atitude do Pessoal de Saúde , Pessoa de Meia-Idade , Entrevistas como AssuntoRESUMO
BACKGROUND: Neglected tropical diseases (NTDs) significantly impact the physical and mental well-being of affected individuals, particularly in Nigeria. This study aims to evaluate the effectiveness of integrating mental health services with self-care practices for individuals suffering from leprosy, Buruli ulcer (BU), and lymphatic filariasis (LF). The role of trained Healthcare Workers (HCWs) and NTD champions (NTD-Cs) will be explored to enhance health outcomes in this population. METHODS: A cluster-randomized controlled trial was conducted in four local government areas (clusters) with the highest incidence of leprosy, BU, or LF. Clusters were purposively selected and randomized into intervention and control groups: three clusters received interventions, while one served as a control. The intervention arms include (a) Mental health and self-care interventions by NTD-Cs. (b) Mental health and self-care interventions by HCWs. (c) Self-care interventions only by HCWs. d) Control group receiving standard care. Data were collected at baseline and postintervention using validated questionnaires, including the Patient Health Questionnaire and World Health Organization Quality of Life (QOL-BREF), among others. The intervention will last for 8 months, with monthly self-help group meetings providing support and resources. RESULTS: The study aims to provide evidence on the effectiveness of integrated mental health and self-care interventions for NTD patients by evaluating outcomes such as mental health status, quality of life (QOL), and socioeconomic factors. CONCLUSION: This trial aims to inform policy and practice by demonstrating the potential benefits of integrating mental health services within the care framework for individuals affected by NTDs in Nigeria. If successful, the findings will contribute to the enhancement of healthcare delivery and may be incorporated into the National Tuberculosis and Leprosy Control Program for broader implementation across the country.Trial registration: PACTR Registration number: PACTR202404852537141.https://pactr.samrc.ac.za/Default.aspx?Logout=TrueRetrospectively registered.
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Úlcera de Buruli , Filariose Linfática , Hanseníase , Doenças Negligenciadas , Qualidade de Vida , Humanos , Nigéria/epidemiologia , Doenças Negligenciadas/epidemiologia , Doenças Negligenciadas/prevenção & controle , Hanseníase/epidemiologia , Úlcera de Buruli/epidemiologia , Filariose Linfática/epidemiologia , Autocuidado , Mycobacterium , Inquéritos e Questionários , Feminino , Masculino , Adulto , Pessoal de Saúde , Serviços de Saúde Mental/organização & administraçãoRESUMO
Background and Aim: Leprosy is one of the most common skin neglected tropical diseases in Ethiopia posing social stigma, physical disability, deformity, discrimination, loss of social status, and poor quality of life in families. Hence, evidence-based collaborative inter-sectoral actions should be performed to reduce and eliminate its burden in endemic areas. Thus, the aim of this study was to assess the acid-fast positivity rate and associated factors of leprosy among suspected cases in Northeastern Ethiopia: a cross-sectional study. Method: A cross-sectional study was conducted from September 2022 to March 2023 among 256 leprosy-suspected cases selected using a simple random sampling technique. A semi-structured questionnaire was used to collect socio-demographic, clinical, and predictor variables of leprosy through face-to-face interviews. Skin slit specimens were collected and stained using Ziehl-Neelsen staining technique. STATA 17 was used for analysis. The scale reliability coefficient was checked using Cronbach's α and the goodness-of-fit test of the model was assessed by the Hosmer-Lemshow test. Moreover, bivariable and multivariable logistic regression were computed. Finally, variables with an adjusted odds ratio and their p < 0.05 were taken as statistically significant. Result: The mean ± standard deviation of the age of participants was 43.25 ± 16.35. The overall, prevalence of acid-fast positivity among suspected cases was 19.6% (95% CI: 15.8%, 23.4%). Multivariable logistic regression analysis showed that sex being male (p = 0.045), rural residence (p = 0.047), not eating three times meals frequency (p = 0.014), not eating a balanced diet (p = 0.036), poor personal hygiene (p = 0.028), distant from health facility (p = 0.039), not washing hands usually (p = 0.013), presence of current co-infection (p = 0.002), type of leprosy (p = 0.004), and close contact with leprosy cases (p = 0.003) were more likely to be positive for leprosy. Conclusion: The prevalence of leprosy was remained high. Thus, early detection and treatment are necessary to reduce delayed diagnosis and hidden transmission of leprosy in the community. By addressing the driving factors through evidence-based intervention, we can significantly control the burden of leprosy in the affected communities, and improve their health outcomes and quality of life.
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OBJECTIVE: to understand the transitional processes that affect the adaptation of people who live with limitations resulting from leprosy. METHODS: This is a qualitative study based on the precepts of Transition Theory, mediated by care-research, with 24 people with limitations resulting from leprosy in an ex-hospital colony in Piauí. Semi-structured interviews were carried out. The interviews were analyzed using Iramuteq software. RESULTS: the researched-caregivers experienced the four types of transitions, including feelings of fear, worry, loneliness, hopelessness, guilt and a tendency to hide the diagnosis. Breakdowns and resignation were revealed, with spirituality, adaptation to the new life situation and acceptance as facilitating conditions for coping with the transitional process, with a consequent improvement in quality of life. FINAL CONSIDERATIONS: the transitional processes had a positive significance, since they contributed to adaptation and the achievement of quality of life.
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Adaptação Psicológica , Hanseníase , Pesquisa Qualitativa , Humanos , Hanseníase/psicologia , Hanseníase/complicações , Masculino , Feminino , Pessoa de Meia-Idade , Adulto , Qualidade de Vida/psicologia , Idoso , Brasil , Entrevistas como Assunto/métodos , /psicologiaRESUMO
Neglected tropical diseases (NTD) are chronic infectious diseases affecting low-income populations (mainly in tropical and subtropical climates), characterized by high morbidity and low mortality. This study described the epidemiology of mortality from NTDs in the state of Maranhão, Brazil. Data from the Brazilian Mortality Information System evidenced 2,642 deaths from NTDs between 2001 and 2021; 31.13% were related to leishmaniasis (mainly the visceral form) and 20.82% to leprosy. A total of 211 municipalities in Maranhão had registered mortality due to NTDs. We identified, high-risk spatial and spatiotemporal conglomerates in the western and southern areas of Maranhão, comprising mostly municipalities with high social vulnerability and low human development. Integrated mapping of NTDs may allow the development of public intervention policies and is an important strategy to control and eliminate NTDs in the most affected populations.
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Doenças Negligenciadas , Brasil/epidemiologia , Humanos , Criança , Adolescente , Masculino , Feminino , Populações Vulneráveis , Fatores Socioeconômicos , Pré-Escolar , Adulto , Pessoa de Meia-Idade , Lactente , Adulto JovemRESUMO
Neglected tropical diseases (NTDs) affect over a billion individuals worldwide, predominantly in low-income countries in tropical and subtropical areas. These diseases frequently result in chronic and debilitating health conditions that significantly diminish the quality of life, often leading to social isolation. The frequent dermatological manifestations underscore the role of dermatologists in managing NTDs. This editorial highlights the crucial role of dermatologists in diagnosing and treating NTDs, focusing on four key diseases: Monkeypox (Mpox) infection, scabies, leprosy, and leishmaniasis.
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Hanseníase , Doenças Negligenciadas , Humanos , Doenças Negligenciadas/diagnóstico , Doenças Negligenciadas/terapia , Hanseníase/diagnóstico , Hanseníase/complicações , Hanseníase/terapia , Escabiose/diagnóstico , Escabiose/tratamento farmacológico , Escabiose/terapia , Dermatologia , Medicina Tropical , DermatologistasRESUMO
Background: Despite the known detrimental socio-economic consequences of leprosy morbidity, disability and social exclusion at the household level, research investigating the precise economic burden of leprosy remains scarce. This study aims to address this gap by examining the socio-economic burden of leprosy in Ho municipality in the Volta Region of Ghana. Methods: This was a cross-sectional cost of illness study, and quantitative data were collected from leprosy patients between October and December 2023. Data collected included socio-demographic characteristics, direct and indirect costs related to treatment of leprosy from the patient's perspective. Stata version 14 was used for the analysis. Results: A total of 35 respondents participated in the study, comprising 51.43% females and 48.57% males. All respondents (100%) reported having a valid National Health Insurance Scheme membership. The average total cost of leprosy treatment per patient, encompassing both direct and indirect expenses, was US$361.54 (SD ± 286.87). Disaggregating this cost further revealed a medical cost of US$44.30, a non-medical cost of US$47.07 and an indirect cost of US$290.16. The estimated annual household income of respondents was US$446.4 and 60% of respondents incurred expenditure that was more than 10% of their annual income and were deemed to have experienced catastrophic payment. Patients with sequelae incurred additional costs of US$46 (range: US$8.3-US$166.7) per case. Conclusion: The costs of treating leprosy were considerably high leading to catastrophic health payments. This highlights the need for an all-encompassing strategy that addresses medical, non-medical and indirect costs. Implementing targeted support programs and ensuring medication affordability are key steps towards mitigating the economic susceptibility of leprosy patients and facilitating successful treatment outcomes.
RESUMO
There are 75 identified Particularly Vulnerable Tribal Groups (PVTGs) in India of which the highest numbers i.e., 13 PVTGs reside in Odisha. Particularly Vulnerable Tribal Groups (PVTGs) are indigenous communities distinguished by their unique cultural practices, traditional lifestyles, and geographical isolation. Their health status is often precarious due to strong traditional health practices, limited access to healthcare, inadequate nutrition, and exposure to community-acquired diseases. This review aims to explore the health status of all 13 PVTGs in Odisha, analyzing 67 studies from various sources/databases between 2000 and 2023. These studies include peer-reviewed published papers, grey literature, and brief reports. The findings showed that nutritional status among PVTGs varies widely while low BMI and undernutrition exist at different rates in different tribes. Deficiency diseases like goitre and anemia, infectious ailments such as tuberculosis and leprosy, and non-communicable diseases like hypertension and diabetes were reported with significant prevalence. Additionally, hemoglobinopathies, oral health issues, eye problems, undernutrition, poor mental health, and various other health challenges affect these tribes. Furthermore, behavioral issues like high tobacco consumption, alcoholism and menstrual health and hygiene disparities are other major challenges. Health disparities in diverse PVTGs arise from socioeconomic factors, cultural norms, and healthcare access. PVTGs face unique hurdles like major geographic isolation and traditional cultural influences which significantly shape their health choices. Addressing their poor health status demands cultural understanding, community engagement, and interventions targeting root inequalities for inclusive healthcare and improved well-being.
Assuntos
Nível de Saúde , Estado Nutricional , Populações Vulneráveis , Humanos , Índia , Feminino , Masculino , Grupos Populacionais/estatística & dados numéricos , Povos Indígenas , Disparidades nos Níveis de Saúde , Fatores SocioeconômicosRESUMO
Objective: To assess the knowledge, attitudes, and practices of Barangay Health Workers (BHWs) in Marawi City regarding Hansen's Disease (HD). Methods: A cross-sectional study was conducted among the Barangay Health Workers of Marawi City. This study was conducted in two phases. Phase 1 was questionnaire development where the knowledge, attitudes, and practices (KAP) questionnaire was formulated and administered to six Barangay Health Workers for pre-testing. Phase 2 of the study included the survey and focus group discussion (FGD). A questionnaire comprising of 27 questions was administered to BHWs to assess knowledge, attitude, and practices regarding HD. Results: A total of 49 BHWs underwent the Phase 2 survey and six BHWs joined the FGD. The mean age of all the survey participants was 34.9 ± 19.3 years. Among the 49 participants, 40 (81.6%) were females. The knowledge of BHWs was found to be adequate only in six (12%) BHWs. Positive attitude was observed in 12 (24.5%) and adequate practices regarding HD were observed in 33 (67.3%) BHWs. First-hand experience of diagnosing HD patients was significantly associated with adequate knowledge (p < 0.001) and positive attitude of BHWs (p < 0.001). There was a significant association between > 5 years of experience as BHWs (p = 0.027) and first-hand experience in diagnosing leprosy (p = 0.005) with adequate practices of BHWs regarding HD. In the FGD, BHWs expressed their lack of training which highlighted the need for refresher courses on HD. Conclusions: Knowledge about HD is low among Marawi BHWs due to their inadequate training. The attitudes and practices of BHWs are also affected because of deficient knowledge regarding etiology and transmission of HD. There is a need for adequate training and refresher courses on HD to increase the knowledge of BHWs regarding HD.