Community stigma and desired social distance towards people affected by leprosy in Chandauli District, India

Objective: To collect baseline data on community stigma against leprosy and leprosy-related knowledge and ideas, with a view to develop contextualised community education and stigma reduction interventions. The data will also be used to evaluate subsequent stigma-reducing interventions. Methods: Community members (n ¼ 371) in Chandauli District, India, were interviewed, using a knowledge questionnaire, the EMIC Community Stigma Scale (EMIC-CSS) and Social Distance Scale (SDS). In the latter two scales, a higher sum score indicates a higher level of stigmatizing and negative attitudes of community members towards leprosy-affected people. Linear and quantile regression analyses were applied to explore the relation between (sociodemographic) covariates and the level of negative attitudes. Results: Community members indicated that avoidance of people affected by leprosy, problems with (prospective) marital life, concealment, and shame and embarrassment are present. Linear regression showed that knowing people affected by leprosy and being a government employee significantly increased one’s mean EMIC-CSS score, whereas a higher level of education significantly decreased this. Additionally, community members reported a desire to create social distance between people affected by leprosy and their children. Quantile regression showed that increased leprosy-specific knowledge and religion were associated with significantly decreased SDS scores, whilst housewives had significantly increased SDS scores. Knowledge was poorest regarding the transmission and cause of leprosy: only 8·1% and 10·5% knew the correct route of transmission and cause of leprosy. Conclusion: The level of negative attitudes of the community towards leprosy is high in Chandauli District, which may affect many aspects of the lives of people affected by leprosy. Community members knew least about the transmission and cause of leprosy and these domains should, therefore, be considered when designing stigma-decreasing interventions

Depression and mental wellbeing in people affected by leprosy in southern Nepal

Background Leprosy, a leading cause of disability, remains endemic in southern Nepal. Alongside physical impairment and stigmatization, many people affected by leprosy suffer from mental health problems. Objectives This study had two objectives: (a) Establishing a baseline level of mental wellbeing and depression among people affected by leprosy in southern Nepal, and (b) Examining factors that influence mental wellbeing and depression in this target group. Methods A cross-sectional survey was conducted using three interview-administered questionnaires measuring level of depression (PHQ-9), mental wellbeing status (WEMWBS) and level of stigma (5-QSI-AP). Random clustering sampling was used to include leprosy-affected people from Self Help Groups (SHGs) and the reference group was matched based on socio-demographic characteristics. All participants were adults with no additional major morbidities. A sample of 142 persons affected by leprosy and 54 community controls were included. Results People affected by leprosy participating in SHGs had a significantly lower level of mental wellbeing and higher level of depression than the general population. Both mental wellbeing and depression were influenced by gender and the level of stigma. In addition, the level of depression was associated with the disability grade of leprosy-affected people. Conclusion Leprosy-affected people need mental health-care interventions at different organizational levels, with attention to identifying individuals at increased risk for mental health problems or with additional needs. These findings highlight the demand for further research on specific interventions to improve the mental health of leprosy-affected people

Mental wellbeing among people affected by leprosy in the Terai region, Nepal

Objectives: The relationship between leprosy, stigma and poor mental health is well recognized. The overall objective of this study was to help improve mental wellbeing in people affected by leprosy by gaining more insight into what factors related to cultural, social and personal life influence mental wellbeing amongst people affected by leprosy in the Terai region, Nepal. Methods: We adopted a qualitative approach with purposive sampling to include people affected by leprosy in the Terai region of Nepal. Fourteen people with various leprosy disability grades and two healthcare workers were recruited for in-depth interviews. We used a framework analysis method with characteristics of the Grounded Theory Approach. Predetermined themes were explored, and new themes brought up during the interviews were also analysed. Results: Leprosy-related stigma still persists in the Terai region, negatively influencing mental wellbeing. A higher disability grade can result in a poorer mental wellbeing. Additional key factors influencing mental wellbeing include: People’s feelings and experiences regarding leprosy, family and community, work and culture. Conclusions: The mental wellbeing of the respondents was negatively influenced by direct and indirect consequences of being affected by leprosy. Stigma, disability grade, family, community, work and culture are very important factors that influence mental wellbeing in the Terai region, Nepal. We recommend that interventions should include a combination of strategies, including lay and peer counselling, socio-economic rehabilitation and involvement of community and family to improve the mental wellbeing of those affected. We also recommend using a holistic and gender-specific approach when developing these interventions

Development of a questionnaire to determine the case detection delay of leprosy: A mixedmethods cultural validation study

Background Delay in case detection is a risk factor for developing leprosy-related impairments, leading to disability and stigma. The objective of this study was to develop a questionnaire to determine the leprosy case detection delay, defined as the period between the first signs of the disease and the moment of diagnosis, calculated in total number of months. The instrument was developed as part of the PEP4LEP project, a large-scale intervention study which determines the most effective way to implement integrated skin screening and leprosy postexposure prophylaxis with a single-dose of rifampicin (SDR-PEP) administration in Ethiopia, Mozambique and Tanzania. Methodology/Principal findings A literature review was conducted and leprosy experts were consulted. The first draft of the questionnaire was developed in Ethiopia by exploring conceptual understanding, item relevance and operational suitability. Then, the first draft of the tool was piloted in Ethiopia, Mozambique and Tanzania. The outcome is a questionnaire comprising nine questions to determine the case detection delay and two annexes for ease of administration: a local calendar to translate the patient’s indication of time to number of months and a set of pictures of the signs of leprosy. In addition, a body map was included to locate the signs. A ‘Question-by-Question Guide’ was added to the package, to provide support in the administration of the questionnaire. The materials will be made available in English, Oromiffa (Afaan Oromo), Portuguese and Swahili via https://www.infolep.org. Conclusions/Significance It was concluded that the developed case detection delay questionnaire can be administered quickly and easily by health workers, while not inconveniencing the patient. The instrument has promising potential for use in future leprosy research. It is recommended that the tool is further validated, also in other regions or countries, to ensure cultural validity and to examine psychometric properties like test-retest reliability and interrater reliability

Factors influencing the mental wellbeing of persons affected by leprosy in Far-Western Nepal

Objective To investigate factors that influence the mental wellbeing of persons affected by leprosy in Far-Western Nepal. Methods The study used a cross-sectional design with a qualitative approach. Semi-structured, in-depth interviews and focus group discussions covering topics such as feelings towards and experiences with leprosy, mental wellbeing, knowledge about leprosy, social life, community, culture and future outlook were employed. The data were analysed using Framework Analysis and Thematic Open Analysis. Results A total of 25 persons affected by leprosy were included in the in-depth interviews and 13 persons participated in focus group discussions. We found that participants often experienced stigma and/or mental distress. Participants reported physical weakness or pain, activity limitations, worries about their disease and its implications, feelings of shame, suicidal thoughts, and perceived and/or internalised stigma. Factors influencing mental wellbeing included discrimination, social support, religion, participation (restrictions), (in)ability to work, community attitudes, knowledge of leprosy and cultural beliefs about the disease. Conclusions This study revealed that the majority of participants faced leprosy-related stigma, physical discomfort, restrictions in social participation and mental distress. We recommend the development of interventions such as counselling after diagnosis with leprosy, increasing leprosy awareness and knowledge, addressing negative attitudes and beliefs in the community and stimulating social participation

The magnitude and directions of the associations between early life factors and metabolic syndrome differ across geographical locations among migrant and non-migrant ghanaians—the rodam study

Background: Early-life factors (ELFs) such as childhood nutrition and childhood socioeconomic status could be the drivers of the increase in metabolic syndrome (MetSyn) among African populations, but data are lacking. This study evaluated whether markers of childhood nutritional status and childhood socio-economic status were associated with MetSyn in adulthood among migrant Ghanaians living in Europe and non-migrant Ghanaians living in Ghana. Methods: Data from the Research on Obesity and Diabetes among African Migrants (RODAM) study, involving 2008 migrants and 2320 non-migrants aged ≥25 years, were analysed for this study. We used leg-length to height ratio (LHR), which is an anthropometric marker of childhood nutritional status, and parental education, which is a marker of childhood socio-economic status, as proxies. Adjusted odds ratios (AOR) and 95% confidence intervals (95% CI) were calculated by logistic regression with adjustments for demographic and lifestyle factors. Results: Parental education was higher among Ghanaians in Europe than among residents in rural and urban Ghana. The prevalence of MetSyn was 18.5%, 27.7% and 33.5% for rural, urban, and migrant residents, respectively. LHR was inversely associated with MetSyn among migrants. Compared with high paternal education, individuals with low paternal education had lower odds of MetSyn in migrants (AOR 0.71 95% CI 0.54–0.94). In contrast, compared with high maternal education, individuals with intermediate maternal education had higher odds of MetSyn in urban Ghanaians (AOR 4.53 95% CI 1.50–3.74). No associations were found among rural Ghanaians. Conclusion: The magnitude and direction of the associations between ELFs and MetSyn differ across geographical locations. Intermediate maternal education was positively associated with MetSyn among urban Ghanaians, while LHR and low paternal education were inversely associated with MetSyn among migrant Ghanaians. Further research into the interplay of genetics, environment and behaviour is needed to elucidate the underlying pathological mechanisms of MetSyn amongst migrants