The role of a community conversation intervention in reducing stigma related to lower limb lymphoedema in Northern Ethiopia.

BACKGROUND: Stigma related to lower-limb lymphoedema poses a major psychosocial burden to affected persons and acts as a barrier to them accessing morbidity management and disability prevention (MMDP) services. Community Conversation (CC), which actively engages community members and disseminates health information amongst them, is believed to break the vicious cycle of stigma by enhancing disease-related health literacy at the community level. METHODS: A quasi-experimental study was conducted in Northern Ethiopia to assess the role of the CC intervention in reducing stigma. In two control districts, a comprehensive and holistic MMDP care package was implemented that included physical health, mental health and psychosocial interventions, whilst in the intervention district the CC intervention was added to the MMDP care package. A total of 289 persons affected by lymphoedema and 1659 community members without lymphoedema were included in the study. RESULTS: Over the course of the intervention, in all sites, community members' knowledge about the causes of lymphoedema increased, and perceived social distance and stigmatizing attitudes towards people with lymphoedema decreased in the community, whilst experienced and internalized stigma decreased amongst affected persons. There were no significant changes for perceived social support. However, the changes were greater in the control sites overall, i.e. those districts in which the holistic care package was implemented without CC. CONCLUSION: The findings suggest that the CC intervention provides no additional stigma reduction when used alongside a holistic MMDP care package. Provision of comprehensive and holistic MMDP services may be adequate and appropriate to tackle stigma related to lower-limb lymphoedema in a resource-constrained setting like Ethiopia.

A qualitative process evaluation of a community conversation intervention to reduce stigma related to lower limb lymphoedema in Northern Ethiopia.

BACKGROUND: Lower limb lymphoedema (swelling of the lower leg) due to Neglected Tropical Diseases (NTDs) such as podoconiosis, lymphatic filariasis and leprosy is common in Ethiopia, imposing huge burdens on affected individuals and communities. Stigma significantly increases the disease burden and acts as a major barrier to accessing lymphoedema care services. A multi-component stigma reduction intervention was implemented in Northern Ethiopia. Community Conversation (CC) was one of the components implemented, and aimed to reduce stigma and enhance access to and uptake of integrated lymphoedema care services with the active engagement of community members. METHODS: A cross-sectional qualitative process evaluation was conducted to document lessons focusing on CC's relevance, outcomes and implementation challenges. Data were collected from a total of 55 purposively selected participants (26 from the CC intervention site and 29 from the control site) through key informant interviews, in-depth individual interviews and focus group discussions. RESULTS: Community Conversations increased acceptability of health messages about lymphoedema and created peer learning opportunities for unaffected community members. Improvement in the awareness of CC participants about the causes, prevention and treatment of lymphoedema contributed significantly to the reduction of stigmatizing attitudes and discriminatory behaviors, thereby improving access to and utilization of lymphoedema care services provided through primary health care facilities. However, a range of challenges affecting implementation of CC and outcome quality were identified, including perceived complexity of the facilitation guide among facilitators, expectation of incentives among CC participants, inadequate implementation of facilitation principles and procedures, inadequacy of supportive supervision, and low engagement of untrained health workers in CC. CONCLUSIONS: With these challenges addressed, the implementation of CC integrated with other lymphoedema care services shows potential to reduce stigma and promote access to lymphoedema care services.

The extent of protective footwear use among school-age rural children at high risk for podoconiosis and socio-economic correlates: A household cross-sectional survey in Southern Ethiopia.

BACKGROUND: Podoconiosis is preventable if genetically susceptible people wear shoes starting from an early age and do so consistently. However, lack of routine use of footwear is one of the major risk factors for podoconiosis and several other foot-related Neglected Tropical Diseases (NTDs). This study is aimed at describing the extent of footwear use among school-age rural children susceptible to the disease and investigating associated socioeconomic factors. METHODS: Cross sectional surveys were conducted in 330 randomly selected households in Wolaita zone, southern Ethiopia. A household head and a child aged between 9 and 15 years were recruited from each household. Household heads provided socioeconomic data while children were asked about their footwear ownership and footwear use. RESULTS: Nearly half (49.5%) of the children reported either walking barefoot or wearing under-protective footwear in a range of situations. Girls, older children, those in higher school grades, who belonged to families with higher socio-economic status, and those who owned a larger number of pairs of footwear reported more protective use of footwear. The linear regression model constituting the adequacy of footwear ownership and interaction term (i.e. family socioeconomic status by adequacy of footwear ownership) variables explained 30% of variance in the protective use of footwear (AR2 = 0.307). The interaction effect of adequate ownership of footwear and family socioeconomic status consistently predicted the protective use of footwear among children (ß = -0.175, p<0.01) though the main effect of adequacy of footwear ownership was stronger (ß = 0.507, p<0.001). CONCLUSION: Increased adoption of protective footwear is needed to effectively prevent school-age children living in endemic areas from developing podoconiosis and other neglected tropical diseases. Interventions aimed to improve the protective footwear use should consider approaches that also increase the socio-economic capacity of families in podoconiosis endemic communities.

A qualitative study on the implementation of a holistic care package for control and management of lymphoedema: experience from a pilot intervention in northern Ethiopia.

BACKGROUND: Neglected Tropical Diseases (NTDs) such as podoconiosis, lymphatic filariasis (LF) and leprosy mainly affect communities in low resource settings. These diseases are associated with physical disability due to lymphoedema as well as poor mental health and psychosocial outcomes. Integration of care across these NTDs at primary health care level, which includes mental health and psychosocial care alongside physical health care, is increasingly recommended. METHODS: A holistic integrated care package was developed and piloted as part of the EnDPoINT project in Gusha district, Awi zone, Ethiopia. The intervention was conducted at the health care organization, health facility and community levels. To assess the impact of the care package in terms of acceptability, scalability, sustainability and barriers to implementation, a qualitative study was conducted in January 2020. This included four focus group discussions (29 participants) and ten key informant interviews with decision makers, health professionals, patients, and community representatives. RESULTS: The integrated lymphoedema care package was found to be efficient compared to vertical programs in saving time and resources. It also resulted in improved awareness of the causes, treatment and prevention of lymphoedema, in marked improvements in the lymphoedema, and in reduced stigma and discrimination. The care package was found to be acceptable to patients, health professionals and decision makers. The barriers to integrated care were unrealistic patient expectations, inadequate dissemination across health workers, and poor transportation access. Health professionals, decision makers and patients believed the integrated lymphoedema care package to be scalable and sustainable. CONCLUSION: The integrated holistic care package was found to be acceptable to patients, health professionals and decision makers. We recommend its scale-up to other endemic districts.

Community Involvement in the Care of Persons Affected by Podoconiosis-A Lesson for Other Skin NTDs.

Podoconiosis is a neglected tropical disease (NTD) characterized by lower-leg swelling (lymphedema), which is caused by long-term exposure to irritant red-clay soils found within tropical volcanic high-altitude environments with heavy rainfall. The condition places a substantial burden on affected people, their families and communities, including disability, economic consequences, social exclusion, and stigma; mental disorders and distress are also common. This paper focuses on community-based care of podoconiosis, and, in particular, the role that community involvement can have in the reduction of stigma against people affected by podoconiosis. We first draw on research conducted in Ethiopia for this, which has included community-based provision of care and treatment, education, and awareness-raising, and socioeconomic rehabilitation to reduce stigma. Since people affected by podoconiosis and other skin NTDs often suffer the double burden of mental-health illness, which is similarly stigmatized, we then point to examples from the mental-health field in low-resource community settings to suggest avenues for stigma reduction and increased patient engagement that may be relevant across a range of skin NTDs, though further research is needed on this.

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.

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.

Interpretations of education about gene-environment influences on health in rural Ethiopia: the context of a neglected tropical disease.

BACKGROUND: Misunderstandings of the role of genetics in disease development are associated with stigmatizing behaviors and fatalistic attitudes about prevention. This report describes an evaluation of community understanding of an educational module about genetic and environmental influences on the development of podoconiosis, a neglected tropical disease endemic in highland Ethiopia. METHODS: A qualitative process assessment was conducted as part of a large prospective intervention trial in August 2013, in Wolaita Zone, southern Ethiopia. Sixty five participants were purposively selected from 600 households randomized to receive the inherited susceptibility module. The educational module used pictorial representations and oral explanations of the interaction of inherited sensitivity and soil exposure and was delivered by lay health educators in participants' homes. Data were collected using semi-structured individual interviews (IDIs) or focus group discussions (FGDs). RESULTS: Qualitative analyses showed that most participants improved their understanding of inherited soil sensitivity and susceptibility to podoconiosis. Participants linked their new understanding to decreased stigma-related attitudes. The module also corrected misconceptions that the condition was contagious, again diminishing stigmatizing attitudes. Lastly, these improvements in understanding increased the perceived value of foot protection. CONCLUSIONS: Taken together, these improvements support the acceptability, feasibility and potential benefits of implementing gene-environment education in low and middle income countries.

Association Between Causal Beliefs and Shoe Wearing to Prevent Podoconiosis: A Baseline Study.

Podoconiosis is a neglected tropical disease caused by long-term barefoot exposure to volcanic clay soil. Our previous qualitative research identified various domains of beliefs about the causes of podoconiosis held by members of the community. This cross-sectional survey, conducted in southern Ethiopia, aimed to quantitatively evaluate the prevalence of these beliefs and to assess their association with observed shoe-wearing behavior. A total of 1,800 adult respondents (600 from affected families and 1,200 from unaffected families of an index child aged between 3 and 6 years) took part in the survey. Two standardized versions of an enumerator-administered survey were created, with "all day, everyday" shoe-wearing status of the index child assessed in parallel for the affected and unaffected household respondents. Associations between measures were assessed using logistic regression. Accuracy of understanding about podoconiosis was significantly lower among respondents from unaffected than affected households (P < 0.001). Among affected respondents, beliefs about heredity were negatively associated with reported shoe wearing of the index child (odds ratio = 0.67, 95% confidence interval = 0.55-0.83). In both groups, associations of causal beliefs with shoe wearing were moderated by risk perceptions. Interventions aimed at preventing podoconiosis and improving shoe wearing should consider family-oriented education on hereditary susceptibility that targets affected and unaffected families in resource-limited settings.

'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.

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.

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.

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.

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

BACKGROUND: Health-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. METHODS: Indicators 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. RESULTS: All 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). CONCLUSION: We 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.

Assessment of sexual violence against female students in Wolaita Sodo University, Southern Ethiopia.

Studies indicate that girls and women encounter sexual violence in their day-to-day social life in all cultures and societies. This study aimed to determine the prevalence of sexual violence against female students in Wolaita Sodo University; 374 female students provided responses to self-administered questionnaire. The study revealed 23.4% (95% CI = 18.7-27.3) attempted rape, 8.7% (95% CI = 3.6-12.9) completed rape, 24.2% (95% CI = 17.7-26.1) committed physical harassment, 18.7% (95% CI = 12.8-20.3) committed verbal harassment, and 11.3% (95% CI = 6.6-12.6) forced sexual initiation. Reported level of these perpetrations was experienced mainly at high school and during enrollment year in the university. Boyfriends, close friends, family members and relatives, school and university teachers, other employees, and strangers were found to be the key perpetrators of sexual violence against women. Interventions are required to create a safe learning environment for female students through prevention and rehabilitation programs.

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

BACKGROUND: Podoconiosis 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. METHODS: A 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. RESULTS: Discontinuation 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. CONCLUSIONS: Several 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.

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 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.