Living with stigma: Voices from the Cured Lepers’ village in Ghana

Sottie, Cynthia Akorfa; Darkey, Judith

doi:10.1080/00981389.2018.1526842

Cited by 14 publications

(35 citation statements)

References 9 publications

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“…Interestingly, even though the questions related to knowledge that were answered correctly most and least frequently were the same in both countries in the present study, the local beliefs, especially considering the cause and mode of transmission, varied by area of residence. This confirms findings from other studies that showed that (socio)cultural beliefs about leprosy can increase stigma [13,14,[18][19][20][21][22][23]. We found several local beliefs that can be addressed, such as the belief that leprosy is in the family for seven generations, that a cause of leprosy is that a woman conceives while having sexual intercourse during her period (Indonesia), that leprosy has a supernatural cause and that persons affected by leprosy are untouchable (India).…”

Section: Local Beliefssupporting

confidence: 90%

“…Misconceptions such as that leprosy transmits by touch, a prominent belief among participants from India in the present study, increase stigma. These misconceptions are often linked to fear of the disease and fear of transmission [13,20,38,39]. To reduce stigma these misconceptions need to be addressed and challenged and knowledge needs to be increased.…”

Section: Poor Knowledge and Misconceptionsmentioning

confidence: 99%

“…Knowledge about leprosy plays a crucial role in stigma [14][15][16][17][18]. Local (mis)beliefs, such as the beliefs that all leprosy patients end up with disabilities, that leprosy is not curable or results in death or that imply that the person affected has done wrong and brought the disease upon himself all contribute to stigma [13,14,[18][19][20][21][22][23]. Research showed that personal characteristics such as gender [15,16,22,24], occupation [16,22,[24][25][26], years of education [15][16][17]22,25], age [15,25,27,28] and living area [15,24,27,29,30] are associated with community stigma against persons affected by leprosy.…”

Section: Introductionmentioning

confidence: 99%

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Leprosy perceptions and knowledge in endemic districts in India and Indonesia: Differences and commonalities

et al. 2021

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Background Understanding how knowledge, attitudes and practices regarding leprosy differ in endemic countries can help us develop targeted educational and behavioural change interventions. This study aimed to examine the differences and commonalities in and determinants of knowledge, attitudes, practices and fears regarding leprosy in endemic districts in India and Indonesia. Principle findings A cross-sectional mixed-methods design was used. Persons affected by leprosy, their close contacts, community members and health workers were included. Through interview-administered questionnaires we assessed knowledge, attitudes, practices and fears with the KAP measure, EMIC-CSS and SDS. In addition, semi-structured interviews and focus group discussions were conducted. The quantitative data were analysed using stepwise multivariate regression. Determinants of knowledge and stigma that were examined included age, gender, participant type, education, occupation, knowing someone affected by leprosy and district. The qualitative data were analysed using open, inductive coding and content analysis. We administered questionnaires to 2344 participants (46% from India, 54% from Indonesia) as an interview. In addition, 110 participants were interviewed in-depth and 60 participants were included in focus group discussions. Knowledge levels were low in both countries: 88% of the participants in India and 90% of the participants in Indonesia had inadequate knowledge of leprosy. In both countries, cause, mode of transmission, early symptoms and contagiousness of leprosy was least known, and treatment and treatability of leprosy was best known. In both countries, health workers had the highest leprosy knowledge levels and community members the highest stigma levels (a mean score of up to 17.4 on the EMIC-CSS and 9.1 on the SDS). Data from the interviews indicated that people were afraid of being infected by leprosy. Local beliefs and misconceptions differed, for instance that leprosy is in the family for seven generations (Indonesia) or that leprosy is a result of karma (India). The determinants of leprosy knowledge and stigma explained 10–29% of the variability in level of knowledge and 3–10% of the variability in level of stigma. Conclusion Our findings show the importance of investigating the perceptions regarding leprosy prior to educational interventions in communities: even though knowledge levels were similar, local beliefs and misconceptions differed per setting. The potential determinants we included in our study explained very little of the variability in level of knowledge and stigma and should be explored further. Detailed knowledge of local knowledge gaps, beliefs and fears can help tailor health education to local circumstances.

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Section: Local Beliefssupporting

confidence: 90%

Section: Poor Knowledge and Misconceptionsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Leprosy perceptions and knowledge in endemic districts in India and Indonesia: Differences and commonalities

et al. 2021

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“…This belief and the fear of costs of treatment and of disability in turn had a negative influence on marriage prospects and marital stability, also for family members of persons affected [55,59]. High levels of stigma were also found among persons affected by lymphatic filariasis in Ghana [15,50] and Nigeria [46,47] and persons affected by leprosy in Ghana [60,61], Tanzania [62] and Nigeria [43,45,63,64]. Some studies in Africa found that persons affected by leprosy and lymphatic filariasis are also stigmatized by their family members [50,61,62].…”

Section: Plos Neglected Tropical Diseasesmentioning

confidence: 99%

The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: A qualitative study in Northwest Ethiopia

Noordende

Aycheh

Schippers³

2020

PLoS Negl Trop Dis

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Background Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looks at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life. Methodology The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted. Participants, persons affected and their family members, were selected by purposive sampling. Data were collected between August and November 2017 in Awi zone, Northwest Ethiopia and analysed by three independent researchers using open, inductive coding and content analysis. Results A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. We found that participation restrictions, reduced productivity and marginalisation were common. In addition, discrimination in the communities occurred often, often extending to family members of persons affected. Divorce and difficulties in finding a spouse were common for persons affected and their family members. Many persons affected reported mental health problems. While most people got social and physical support from their families, there were a few exceptions. In particular, persons with younger children seemed to lack social support. Having to provide for their affected family member sometimes caused stress, school dropouts and an additional workload. Financial problems and loss of livelihood were reported by almost all participants.

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“…16,17 Perceptions about leprosy, such as knowledge, attitudes and cultural beliefs, play an important role in stigma and early case finding. 14,[19][20][21][22][23][24][25][26][27][28] For example, people's knowledge influences their awareness that signs and symptoms are due to leprosy which, if awareness is lacking, hampers early reporting of leprosy. [29][30][31] In addition, community attitudes towards persons affected by leprosy are strongly influenced by local misconceptions, cultural and religious beliefs and fears that may be linked to this.…”

Section: Introductionmentioning

confidence: 99%

Towards a cross-neglected tropical disease perception study toolkit: a prototype toolkit developed in the field of leprosy

Noordende

Brakel

2021

LEPROSY

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Objectives: A negative perception of leprosy and other neglected tropical diseases (NTDs) is a problem that is seen globally. It results in discrimination, social exclusion and widespread mental health problems. There is a need for a standardised toolkit to assess the different aspects of perception of leprosy or other NTDs, including essential knowledge of these conditions. Methods: We developed the Perception Study Toolkit (PST). This toolkit consists of four measures, a Communication Needs Assessment questionnaire, Knowledge Attitudes and Practices questionnaire, the EMIC community stigma scale and the Social Distance Scale. It also comprises qualitative methods to investigate perception: the way people see leprosy, what they know about leprosy and their attitudes, beliefs and reported behaviour towards persons affected by leprosy. The PST is a toolkit and comprises separate instruments that assess different aspects of perception, it is also possible to use only one or a few of the instruments of the PST. Results: This is not applicable because this is not a study. Conclusions: The PST can help identify specific beliefs, knowledge gaps, misconceptions and fears to inform community education and behaviour change interventions and can be used to monitor and evaluate such interventions. Using a standard toolkit like the PST would enable assessment of the perception of leprosy or other NTDs that would allow comparison across projects and countries including monitoring of changes over time.

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Living with stigma: Voices from the Cured Lepers’ village in Ghana

Cited by 14 publications

References 9 publications

Leprosy perceptions and knowledge in endemic districts in India and Indonesia: Differences and commonalities

Leprosy perceptions and knowledge in endemic districts in India and Indonesia: Differences and commonalities

The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: A qualitative study in Northwest Ethiopia

Towards a cross-neglected tropical disease perception study toolkit: a prototype toolkit developed in the field of leprosy

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