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.

Rural youths' understanding of gene x environmental contributors to heritable health conditions: The case of podoconiosis in Ethiopia

“…Our previous qualitative work with youth in these communities that aimed to understand youth’s explanatory mental models documented a similar connection between GxE and contagion beliefs [ 28 ]. In our previous report we posited that beliefs that susceptibility to podoconiosis passes from generation to generation (i.e., accurate GxE knowledge) co-occurred with observations of families living in close proximity to each other where bodily fluids could be exchanged.…”

“…A large body of literature has shown that contagion beliefs have deep roots and are very difficult to override [ 28 , 39 ]. In this study, youth who reported having social ties to affected individuals were more likely to be accurate in their understanding of GxE contributors.…”

“…Our prior qualitative findings suggested that there was a substantial knowledge disparity regarding podoconiosis causes and preventive actions between youth who were from affected families than youth who were unaffected [ 28 ]. Research to date has indicated that affected adults tended to endorse some explanations of the causes of podoconiosis more strongly than others [ 6 ].…”

“…Selection of survey measures assessed domains of knowledge, and self-efficacy related to conveying GxE information. These constructs of Social Cognitive Theory [ 34 , 35 ], were based on prior literature on requisite competencies for LHWs to be effective [ 36 ] and on our extensive prior qualitative data collected with adults in these communities [ 28 ]. Demographic characteristics assessed included: gender, education level, and age.…”

“…Prior health education efforts to promote shoe wearing among at-risk individuals have been based on extensive qualitative and rigorous quantitative evaluation of these interventions show that adults in these communities continue to harbor misconceptions that the condition is not preventable because of its heritability [ 5 , 24 , 25 ] [ 5 , 6 ] [ 26 ]. A number of other misconceptions are common including beliefs that the condition is contagious or influenced by other environmental exposures (e.g., snake bites) [ 6 , 25 , 27 , 28 ]. In turn, these inaccurate beliefs are associated with risk behaviors such as consistently walking barefoot [ 5 , 6 , 25 ] and holding stigmatizing attitudes towards patients [ 5 , 6 , 29 , 30 ].…”