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

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

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

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 (PConclusions: 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 disease

‘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

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

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 (β = -0.175, p<0.01) though the main effect of adequacy of footwear ownership was stronger (β = 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

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

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

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