Getnet Tadele

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.

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.

Heteronormativity and ‘troubled’ masculinities among men who have sex with men in Addis Ababa

In most societies, heterosexuality is the dominant way of expressing sexuality and masculinity and those men outside of it are stigmatised and discriminated against. This paper explores the sexual lives of men who have sex with men and the personal and social conflicts that arise as they attempt to both live up to societal expectations and manage their sexual desires. It critically explores how an overriding heteronormativity structures and influences mens perception and understanding of sexuality and masculinity/femininity. The paper draws on data from 24 in-depth/life history interviews, one focus group discussion and ethnographic observation conducted between July 2006 and June 2007. The study reveals that powerful and dominating beliefs about heteronormativity and masculinity result in men who have sex with men dealing with a number of issues of personal conflict and contradiction resulting in uncertainty, resentment, ambivalence, worry and discomfort. Heteronormativity or the expectations of parents, community and society at large is far more influential on the sexuality of men who have sex with men than their own individual desires and needs. The paper concludes that there is little room for individuality for Ethiopian men who have sex with men with their sexual bodies ‘belonging’ to parents, families and to society at large.

“Boundaries of Sexual Safety”: Men Who Have Sex with Men (MSM) and HIV/AIDS in Addis Ababa

There is a growing literature on African sexuality that established the presence of homosexuality in about 50 African societies, although widespread public and religious discourse claims homosexuality does not occur in Africa. This article draws from 24 in-depth interviews and one focus group discussion with men who have sex with men (MSM) in Addis Ababa, within a societal context where homosexuality is illegal. The results revealed that there is some degree of misinformation among the MSM who believe that HIV/AIDS can only be transmitted through heterosexual sex. Thus, MSM seemed to be vulnerable to HIV/AIDS and other STIs because of unprotected anal sex, which they believed to be safe. The findings highlight that current efforts aimed at preventing the spread of HIV are not reaching some high-risk behaviors. These findings suggest that interventions aimed at preventing the spread of HIV could benefit from addressing different types of sexual practices and identities. Otherwise, a significant unacknowledged transmission route of HIV may hamper all other public health campaigns against HIV transmission in Ethiopia and make the cost of such campaigns needlessly wasteful.

Vulnerabilities, impacts, and responses to HIV/AIDS in Sub-Saharan Africa

Introduction Getnet Tadele PART I 1. Contextualizing HIV/AIDS in Sub-Saharan Africa: The Link with Tradition, Religion, and Culture Getnet Tadele and Woldekidan Amde 2. Gender Inequalities, Power Relations and HIV/AIDS: Exploring the Interface Ayalew Gebre, Tekalign Ayalew and Helmut Kloos 3. Youth Sexuality and HIV/AIDS: Issues and Contentions Woldekidan Amde and Getnet Tadele 4. Food Insecurity, Poverty, and HIV/AIDS Ayalew Gebre, Sebsib Belay and Helmut Kloos PART II: IMPACTS AND RESPONSES TO HIV/AIDS 5. Socioeconomic and Psychosocial Impacts of HIV/AIDS and Responses at Different Levels of Society Ayalew Gebre, Damtew Yirgu and Helmut Kloos 6. HIV/AIDS and the Mining and Commercial Agricultural Sectors in Southern Africa Charles Hongoro, Getnet Tadele and Helmut Kloos 7. Access to Treatment, Care, Support, and Prevention Services Getnet Tadele, Woldekidan Amde and Helmut Kloos 8. Care and Support for AIDS Orphans Woldekidan Amde and Getnet Tadele 9. Mainstreaming HIV Interventions into Educational Systems Anne A. Khasakhala 10. Monitoring and Evaluation of HIV/AIDS Prevention Programs Anne A. Khasakhala and Helmut Kloos 11. Ethical Issues in HIV/AIDS Biomedical Research Anne A. Khasakhala and Helmut Kloos Conclusion and the Way Forward Damen Haile Mariam and Helmut Kloos

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.

Applying mental model methods to characterize understanding of gene-environment influences: the case of podoconiosis in Ethiopia

ABSTRACT The rapid pace of genomic discovery has raised public expectation and concerns about the utility of new discoveries and their potential to exacerbate health disparities. Improving literacy concerning gene and environmental (GxE) contributors to disease is needed to avoid commonly observed deterministic misconceptions about genomics. Mental models approaches that incorporate community engagement processes could be used to inform GxE literacy-building interventions. We used a mental models approach to describe and systematically compare expert and lay understanding of GxE interactions, using the example of podoconiosis, a non-infectious lymphedema endemic in highland Ethiopia. Methods included: (1) specifying elicitation questions for a literature review, (2) eliciting an expert model, (3) eliciting a lay model, and (4) comparing the two models. We used a coding scheme to identify lay participants’ knowledge gaps, misunderstandings, and extra knowledge relative to the expert standard. Results indicated that lay participants’ viewed poverty as an important susceptibility factor and considered heredity and contagion to have a joint causal influence. Experts did not endorse either of these viewpoints. Conventional expert-based interventions aimed to correct misconceptions about behaviors important for prevention may be stymied by lay views that social environmental factors have more important influences on health outcomes. GxE literacy interventions that consider multiple levels of influence including social determinants of health and personal resilience to augment health education strategies are needed in diverse settings. Novel communication approaches will be needed to help target audiences disentangle long-held conceptions of heredity and contagion.

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.