Abebayehu Tora

A qualitative study on stigma and coping strategies of patients with podoconiosis in Wolaita zone, Southern Ethiopia

Podoconiosis (endemic non-filarial elephantiasis) is a neglected tropical disease that causes affected individuals intense social stigma. Although some studies have investigated community-based stigma against podoconiosis, none has yet attempted to assess coping strategies used by patients to counter stigma. This study aimed to describe and categorize the coping strategies employed by podoconiosis patients against stigma. From January-March 2010 data were gathered through in-depth interviews with 44 patients, six focus group discussions (with a total of 42 participants) and two key informant interviews. The coping strategies employed by patients to deal with stigma could be categorized into three areas: active, avoidant and through changing the relational meaning. Of these coping strategies, avoidant coping is the most negative since it encourages isolation and pushes those employing it towards more risky decisions. Many podoconiosis patients are forced to use this strategy through lack of control due to extreme poverty. Intervention programs must therefore create circumstances in which patients are empowered to actively cope with stigma and play a role in stigma reduction.

The Association of Beliefs About Heredity with Preventive and Interpersonal Behaviors in Communities Affected by Podoconiosis in Rural Ethiopia

Little is known about how beliefs about heredity as a cause of health conditions might influence preventive and interpersonal behaviors among those individuals with low genetic and health literacy. We explored causal beliefs about podoconiosis, a neglected tropical disease (NTD) endemic in Ethiopia. Podoconiosis clusters in families but can be prevented if individuals at genetically high risk wear shoes consistently. Adults (N = 242) from four rural Ethiopian communities participated in qualitative assessments of beliefs about the causes of podoconiosis. Heredity was commonly mentioned, with heredity being perceived as (1) the sole cause of podoconiosis, (2) not a causal factor, or (3) one of multiple causes. These beliefs influenced the perceived controllability of podoconiosis and in turn, whether individuals endorsed preventive and interpersonal stigmatizing behaviors. Culturally informed education programs that increase the perceived controllability of stigmatized hereditary health conditions like podoconiosis have promise for increasing preventive behaviors and reducing interpersonal stigma.

A qualitative study exploring barriers related to use of footwear in rural highland ethiopia: implications for neglected tropical disease control.

Background The role of footwear in protection against a range of Neglected Tropical Diseases (NTDs) is gaining increasing attention. Better understanding of the behaviors that influence use of footwear will lead to improved ability to measure shoe use and will be important for those implementing footwear programs. Methodology/Principal Findings Using the PRECEDE-PROCEED model we assessed social, behavioral, environmental, educational and ecological needs influencing whether and when children wear shoes in a rural highland Ethiopian community endemic for podoconiosis. Information was gathered from 242 respondents using focus groups, semi-structured interviews and extended case studies. Shoe-wearing norms were said to be changing, with going barefoot increasingly seen as ‘shameful’. Shoes were thought to confer dignity as well as protection against injury and cold. However, many practical and social barriers prevented the desire to wear shoes from being translated into practice. Limited financial resources meant that people were neither able to purchase more than one pair of shoes to ensure their longevity nor afford shoes of the preferred quality. As a result of this limited access, shoes were typically preserved for special occasions and might not be provided for children until they reached a certain age. While some barriers (for example fit of shoe and fear of labeling through use of a certain type of shoe) may be applicable only to certain diseases, underlying structural level barriers related to poverty (for example price, quality, unsuitability for daily activities and low risk perception) are likely to be relevant to a range of NTDs. Conclusions/Significance Using well established conceptual models of health behavior adoption, we identified several barriers to shoe wearing that are amenable to intervention and which we anticipate will be of benefit to those considering NTD prevention through shoe distribution.

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

Studies have indicated that social stigma related to podoconiosis (endemic non-filarial elephantiasis) has a major impact on the psychosocial wellbeing of patients. However, little effort has been made so far to quantify the level of both felt and enacted stigma in a range of domains of life. We used a recently developed podoconiosis stigma assessment scale to measure levels of stigma as recalled over the previous 12 months. One hundred and fifty patients with podoconiosis rated the levels of stigma they perceived and experienced in ‘interpersonal interactions’, ‘major life areas’ and ‘community, social and civic life’. High levels of stigma were observed on both felt and enacted stigma scales. The overall average stigma score was 40.7 (range 0 to 96). Enacted stigma was scored higher than felt stigma (mean score 21.2 vs. 19.5, respectively). The mean enacted stigma score was higher in ‘major life areas’, and ‘community, social and civic life’ than ‘interpersonal interactions’, while felt stigma was experienced most at the interpersonal level. Over half of patients reported that they had considered suicide in response to discrimination and prejudice, particularly in interpersonal interactions. Forced divorce, dissolution of marriage plan, insults and exclusion at social events were some of the most commonly mentioned forms of enacted stigma reported by affected individuals. Scores for overall level of stigma and enacted stigma increased significantly with stage of podoconiosis while the association observed in relation to felt stigma was only marginally significant (p = 0.085). Appropriate stigma reduction strategies must be identified and implemented in communities highly endemic for podoconiosis.

Factors related to discontinued clinic attendance by patients with podoconiosis in southern Ethiopia: a qualitative study.

BackgroundPodoconiosis is a lymphoedema of non-infectious cause which results in long-term ill health in affected individuals. Simple, effective treatment is available in certain parts of Ethiopia, but evidence indicates that not all patients continue collecting treatment supplies from clinic sites once started. We used qualitative techniques to explore factors related to discontinued attendance at outreach clinics of a non-government organization in southern Ethiopia.MethodsA cross-sectional qualitative study was conducted in four clinic sites through unstructured in-depth interviews, key informant interviews and focus group discussions with the involvement of 88 study subjects.ResultsDiscontinuation of clinic visits is common among podoconiosis patients. The reasons were: remoteness from the clinic sites, unrealistic expectation of ‘special’ aid, worry about increasing stigma, illness and misconceptions about treatment.ConclusionsSeveral of these factors are remediable through community and individual information and education. Appropriate routes to deliver this information must be identified. Certain factors (such as distance to clinic sites and stigma) require substantial expansion of services or liaison with village-level government health services.

Development of a scale to measure stigma related to podoconiosis in Southern Ethiopia

BackgroundHealth-related stigma adds to the physical and economic burdens experienced by people suffering from neglected tropical diseases (NTDs). Previous research into the NTD podoconiosis showed significant stigma towards those with the disease, yet no formal instrument exists by which to assess stigma or interventions to reduce stigma. We aimed to develop, pilot and validate scales to measure the extent of stigma towards podoconiosis among patients and in podoconiosis-endemic communities.MethodsIndicators of stigma were drawn from existing qualitative podoconiosis research and a literature review on measuring leprosy stigma. These were then formulated into items for questioning and evaluated through a Delphi process in which irrelevant items were discounted. The final items formed four scales measuring two distinct forms of stigma (felt stigma and enacted stigma) for those with podoconiosis and those without the disease. The scales were formatted as two questionnaires, one for podoconiosis patients and one for unaffected community members. 150 podoconiosis patients and 500 unaffected community members from Wolaita zone, Southern Ethiopia were selected through multistage random sampling to complete the questionnaires which were interview-administered. The scales were evaluated through reliability assessment, content and construct validity analysis of the items, factor analysis and internal consistency analysis.ResultsAll scales had Cronbach’s alpha over 0.7, indicating good consistency. The content and construct validity of the scales were satisfactory with modest correlation between items. There was significant correlation between the felt and enacted stigma scales among patients (Spearman’s r = 0.892; p < 0.001) and within the community (Spearman’s r = 0.794; p < 0.001).ConclusionWe report the development and testing of the first standardised measures of podoconiosis stigma. Although further research is needed to validate the scales in other contexts, we anticipate they will be useful in situational analysis and in designing, monitoring and evaluating interventions. The scales will enable an evidence-based approach to mitigating stigma which will enable implementation of more effective disease control and help break the cycle of poverty and NTDs.

Use of footwear and foot condition among rural Ethiopian school children.

Objective: To evaluate whether shoe-wearing affords foot protection among school children living in southern Ethiopia. Methods: Data collectors conducted a standardized foot assessment with children in an elementary school in southern Ethiopia (N = 168). Results: 54% reported wearing shoes consistently in the prior three days. Children wearing closed-toed shoes showed less adherent soil and toe nail dystrophy than those wearing open-toed sandals. There were no differences by shoe type with regard to signs of foot trauma or heel fissures. Conclusions: Shoe wearing provided limited foot protection. Interventions are needed to build behavioral skills, including foot washing and wearing appropriate shoes that maximize foot protection.

Health beliefs of school-age rural children in podoconiosis-affected families: A qualitative study in Southern Ethiopia.

Background Several studies have suggested investigation of health beliefs in children to be an important pre-condition for primary prevention of disease. However, little effort has been made to understand these in the context of podoconiosis. This study therefore aimed to explore the health beliefs of school-age rural children in podoconiosis-affected families. Methodology/Principal findings A cross sectional qualitative study was conducted in March 2016 in Wolaita Zone, Southern Ethiopia. Data were collected through in-depth individual interviews (IDIs) and focus group discussions (FGDs), with a total of one hundred seventeen 9 to15-year-old children recruited from podoconiosis affected families. The study revealed various misconceptions regarding risk factors for podoconiosis. Most children believed barefoot exposure to dew, worms, snake bite, frog urine, other forms of poison, and contact with affected people to be major causes of the disease. Their knowledge about the role of heredity and that of long term barefoot exposure to irritant mineral particles was also weak. Though most participants correctly appraised their susceptibility to podoconiosis in relation to regular use of footwear and foot hygiene, others based their risk perceptions on factors they think beyond their control. They described several barriers to preventive behaviour, including uncomfortable footwear, shortage and poor adaptability of footwear for farm activities and sports, and shortage of soap for washing. Children also perceived low self-efficacy to practice preventive behaviour in spite of the barriers. Conclusion/Significance Health education interventions may enhance school-age children’s health literacy and be translated to preventive action. Overcoming practical challenges such as shortage of footwear and other hygiene facilities requires other forms of interventions such as livelihood strengthening activities. Linking podoconiosis-affected families with local governmental or non-governmental organizations providing socio-economic support for households may assist school-age children in those families to sustainably engage in preventive behaviours.

‘Why should I worry, since I have healthy feet?’ A qualitative study exploring barriers to use of footwear among rural community members in northern Ethiopia

Objective To explore the influence of personal, cultural and socioeconomic factors related to footwear use and non-use in northern Ethiopia. Design A qualitative study was conducted using focus group discussions and in-depth individual interviews. Data were collected using semistructured interview guides. Setting The study was conducted in East and West Gojjam Zones, Amhara region, northwest Ethiopia. Participants A total of 91 individuals from 4 target groups participated in individual and group interviews: (1) non-affected community leaders including Idir (a form of social insurance) leaders, school principals, kebele (the lowest administrative unit) officials, health professionals, teachers, merchants and religious leaders; (2) affected men and women; (3) non-affected men and women not in leadership positions; and (4) school children (both male and female). Results Participants perceived a range of health benefits from donning footwear, including protection against injury and cold. Various types of shoes are available within the community, and their use varied depending on the nature of activities and the season. Personal and socioeconomic barriers hindered the desire to consistently use footwear. Widely established barefoot traditions and beliefs that footwear is uncomfortable, heavy and may weaken the feet have made the regular use of footwear uncommon. Economic constraints were also mentioned as hindering ownership and use of footwear. Distance from places where shoes could be bought also contributed to limited access. Cultural influences promoting gender inequality resulted in women being least able to access shoes. Conclusions We identified several individual, cultural and socioeconomic barriers that influence individuals’ decisions about and use of footwear in rural northern Ethiopia. Promoting education on the health benefits of footwear, curbing podoconiosis-related misconceptions and integrating these with economic empowerment programmes, may all improve the use of footwear.

Dual perspectives on stigma: reports of experienced and enacted stigma by those affected and unaffected by podoconiosis

Background: Disease-related stigma is a public health concern steadily gaining global attention. Evidence consistently shows that an individual’s attribution of disease cause can prompt or justify interpersonal stigma. However, few studies have explored causal beliefs about inherited disease and their influence on stigmatising behaviours in low and middle income countries. Design and methods: The study was conducted in 2013, in six communities in Wolaita zone, Southern Ethiopia. A total of 1800 respondents took part in the study, 600 were affected by an inherited disease and 1200 were unaffected neighbours. Two versions of the interviewer-administered survey were created, with measures assessed in parallel on experienced stigma for the affected and enacted stigma for unaffected respondents. Results: Mean levels of enacted stigma reported by unaffected respondents were slightly lower (2.0, SD=0.7) than experienced stigma reported by affected respondents [2.2 (standard deviation=1.1)]. Beliefs that podoconiosis was hereditary were significantly and positively associated with levels of enacted stigma reported by unaffected respondents and experienced stigma reported by affected respondents (P<0.001). There was no association of reported levels of stigma experienced by affected respondents with levels of enacted stigma reported by the neighbouring unaffected respondents. Males consistently reported significantly lower levels of experienced and enacted stigma than females, P<0.0001. Conclusions: If stigma reduction interventions are to be successful, culturally tailored, gender inclusive and innovative health education programs are required, directed at the general community as well as individuals affected by inherited diseases. Significance for public health Disease-related stigma is a public health concern steadily gaining global attention. In this report, we evaluated dual perspectives of stigma, that is, we compared reports of stigma experienced by families affected by a heritable neglected tropical disease with reports of enacted stigma among neighbouring families unaffected by the disease. We found that unaffected neighbours reported enacting less stigma than affected respondents reported experiencing. Levels of enacted and experienced stigma also were influenced by community members’ perceptions of the causes of disease. Enacted and experienced stigma levels also varied by gender (males reported less of each) across sites. Taken together, these findings highlight the need for stigma reduction strategies to involve both affected and unaffected groups if interventions are to be effective. These efforts also should address community members’ baseline explanations of what causes heritable health conditions while considering gender and community context.