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.
ObjectivesAssess the feasibility of engaging youth to disseminate accurate information about gene by environmental (GxE) influences on podoconiosis, a neglected tropical lymphedema endemic in southern Ethiopia.MethodsA cross sectional survey was conducted with 377 youth randomly selected from 2 districts of Southern Ethiopia. Measures included GxE knowledge (4 true/false statements), preventive action knowledge (endorse wearing shoes and foot hygiene), causal misconceptions (11 items related to contagion) and confidence to explain GxE (9 disagree/agree statements).ResultsOver half (59%) accurately endorsed joint contributions of gene and environment to podoconiosis and preventive mechanisms (e.g., wearing protective shoes and keeping foot hygiene). Multivariable logistic regression showed that youth with accurate understanding about GxE contributors reported having: some education, friends or kin who were affected by the condition, and prior interactions with health extension workers. Surprisingly, higher accurate GxE knowledge was positively associated with endorsing contagion as a causal factor. Accuracy of GxE and preventive action knowledge were positively associated with youth’s confidence to explain podoconiosis-related information.ConclusionsYouth have the potential to be competent disseminators of GxE information about podoconiosis. Interventions to foster confidence among youth in social or kin relationships with affected individuals may be most promising. Efforts to challenge youth’s co-existing inaccurate beliefs about contagion could strengthen the link of GxE explanations to preventive actions.
Background Many health conditions are associated with stigma due to beliefs about their causes and the physical changes experienced by patients. Among such conditions are several neglected tropical diseases (NTDs). Podoconiosis, classified as an NTD, is a form of lymphoedema caused by the co-influence of genetic and environmental factors. It is a major public health problem in Ethiopia and is associated with intense stigma. Despite this, little is known about the factors contributing to stigmatizing attitudes against patients with the disease. Methods A cross-sectional survey was conducted in southern Ethiopia to analyse the attitudes of rural youth and associated risk factors for stigmatizing attitudes towards patients with podoconiosis, with the aim of informing stigma reduction strategies. Results The survey included 336 randomly selected youth. Of the 177 (52.7%) youth who held more stigmatizing attitudes toward patients with podoconiosis, 105 (59.3%) were females and 171 (96.6%) did not have affected friends. Accurate knowledge about gene–environment influences and rejection of infectious causes of podoconiosis were associated with less stigmatizing attitudes. Conclusions Improving understanding of the gene–environment interaction and dispelling beliefs about infectious causes may reduce negative attitudes about podoconiosis. Affected youth may play an important role as agents of change to spread non-stigmatizing messages.
<b><i>Introduction:</i></b> Engaging youth as peer educators has yet to be considered to promote literacy concerning conjoint genetic and environmental (G × E) influences on health conditions. Whether youth living in low- and middle-income countries (LMICs) could and would be willing to serve as lay educators of G × E education is unclear. <b><i>Methods:</i></b> A cross-sectional survey of youth living in Southern Ethiopia was conducted from August to September 2017. Trained data collectors administered the survey on 377 randomly selected youth who ranged in age from 15 to 24; 52% were female and 95% reported having some formal education. Self-reported willingness and a constructed competency score were assessed. Bivariate analyses tested for factors associated with willingness and competency to serve as lay G × E literacy builders. <b><i>Results:</i></b> Competency and willingness were significantly greater (<i>p</i> < 0.05) for youth who were male, had some formal education, and had civic or leadership experience. Differences in median willingness were significant for youth who scored as more competent versus those who scored as less competent (<i>p</i> < 0.001). There were no characteristics that moderated the association of competency with willingness. <b><i>Conclusion:</i></b> Youth peer educator programs hold promise for disseminating improved G Χ E literacy and reducing stigma associated with deterministic misunderstandings. Thoughtful recruitment and training strategies will be needed to ensure that the broadest representation of youth in LMIC contexts has the opportunity to serve in this role, particularly girls and those without formal education.
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