Stigma towards a Neglected Tropical Disease: Felt and enacted Stigma Scores among Podoconiosis Patients in Northern Ethiopia

Abstract

BackgroundPodoconiosis, or non-filarial elephantiasis, is a neglected tropical disease (NTD) characterised by swelling of the lower legs. When left untreated, this disfiguring condition has a significant social impact. This study aimed to describe the stigma experience among podoconiosis patients in Dembecha, Northern Ethiopia and assess potential associations between stigma and sociodemographic determinants.MethodsThe study was conducted in May 2012 in Northern Ethiopia. A questionnaire-based cross-sectional study design was used and stigma was assessed using a validated podoconiosis stigma scale including 'felt’ and 'enacted’ stigma domains. Enacted stigma includes the experience of discrimination such as abuse, loss of employment or prejudicial attitudes, while felt stigma is the perceived fear of enacted stigma. A multivariable linear regression model was used to explore determinants that may be associated with stigma.ResultsA total of 346 clinically confirmed podoconiosis patients participated in the study. The total mean score of all stigma scale items was 30.7 (Range = 0 to 96). There was a higher mean score of scale items in domains of felt stigma (21.7; Range = 0 to 45) as compared to enacted stigma (9.0; Range = 0 to 51). The total mean score of all stigma scale items appeared to increase with disease stage. A final adjusted linear regression model found an association between stigma and factors including monthly income, duration lived in the current residence, and disease stage, after controlling for confounders.ConclusionPodoconiosis is a stigmatized disease with a clear social impact. This paper documented the burden of podoconiosis-related stigma and identified associated factors. Programs aimed at preventing and treating podoconiosis should incorporate interventions to mitigate both felt and enacted stigma. Interventions targeting patients should prioritize those with advanced disease.

Extent of podoconiosis-related stigma in Wolaita Zone, Southern Ethiopia: a cross-sectional study

“…Interestingly, we did not find significant variation in the level of felt or enacted stigma by gender, age or education of the affected individuals. However, disease stage and level of stigma were strongly and positively associated which is congruent with a similar study in Northern Ethiopia (Deribe et al 2013 ). This implies that being affected by the disease regardless of difference in socio-demographic attributes exposes a person to severe forms of stigmatization.…”

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

“…Similar findings were found in a study on women with disabilities in Ethiopia, who experienced societal denial of marriage and motherhood [54]. Several studies among persons affected by leprosy, lymphatic filariasis and podoconiosis found high levels of stigma-for example among persons affected by podoconiosis in Ethiopia [17,20,29,52,[55][56][57][58][59]. Some of these studies attributed the high levels of stigma to beliefs about the disease's causation-the belief that podoconiosis is hereditary [55,59].…”

“…Thirty people were included in the focus group discussions: ten persons affected by leprosy, six children/grandchildren of persons affected by leprosy, eight persons affected by podoconiosis and six children of persons affected by podoconiosis. The average age was 52 (range 25-80) for the persons affected and 20 (range [16][17][18][19][20][21][22][23][24][25][26][27] for the family members. An overview of the number of participants in the interviews can be found in Table 1.…”

“…Leprosy, lymphatic filariasis and podoconiosis can have a significant social impact. Persons affected often face stigma, discrimination and social participation restrictions such as isolation, barriers to employment, education or marriage [11][12][13][14][15][16][17][18][19][20]. Living with a person affected by leprosy, podoconiosis and lymphatic filariasis can have profound effects on all family members.…”

How Should Biobanking Be Governed in Low-Resource Settings?

“…21,22 Risk of Genetic Discrimination A recurring fear in population-level genomics research is that genetic information could be used to stigmatize or socially undermine certain groups, 23 particularly those with stigmatized health conditions, such as podoconiosis, human African trypanosomiasis, epilepsy, and some psychiatric or mental health conditions. 24,25,26,27 Historically, some interpretations of biological evidence have been ethically and scientifically troubling. 23 One example of overinterpretation was the conclusion that South African San people's lack of an allele associated with skin pigmentation and their ability to sense a bitter taste confer a survival advantage in the Kalahari desert; the latter "may reflect a need in hunter-gatherers to avoid toxic plants."…”