Research within Indigenous communities has been criticised for lacking community engagement, for being exploitative, and for poorly explaining the processes of research. To address these concerns, and to ensure ‘best practice’, Jamieson, et al. (2012) recently published a summary of principles outlined by the NHMRC (2003) in “one short, accessible document”. Here we expand on Jamieson et al.’s paper, which while commendable, lacks emphasis on the contribution that communities themselves can make to the research process and how culturally appropriate engagement, can allow this contribution to be assured, specifically with respect to engagement with remote communities. Engagement started before the research proposal is put forward, and continued after the research is completed, has integrity. We emphasise the value of narratives, of understanding cultural and customary behaviours and leadership, the importance of cultural legitimacy, and of the need for time, not just to allow for delays, but to ensure genuine participatory engagement from all members of the community. We also challenge researchers to consider the outcomes of their research, on the basis that increasing clinical evidence does not always result in better outcomes for the community involved.
Strongyloides is a human parasitic nematode that is poorly understood outside a clinical context. This article identifies gaps within the literature, with particular emphasis on gaps that are hindering environmental control of Strongyloides. The prevalence and distribution of Strongyloides is unclear. An estimate of 100-370 million people infected worldwide has been proposed; however, inaccuracy of diagnosis, unreliability of prevalence mapping, and the fact that strongyloidiasis remains a neglected disease suggest that the higher figure of more than 300 million cases is likely to be a more accurate estimate. The complexity of Strongyloides life cycle means that laboratory cultures cannot be maintained outside of a host. This currently limits the range of laboratory-based research, which is vital to controlling Strongyloides through environmental alteration or treatment. Successful clinical treatment with antihelminthic drugs has meant that controlling Strongyloides through environmental control, rather than clinical intervention, has been largely overlooked. These control measures may encompass alteration of the soil environment through physical means, such as desiccation or removal of nutrients, or through chemical or biological agents. Repeated antihelminthic treatment of individuals with recurrent strongyloidiasis has not been observed to result in the selection of resistant strains; however, this has not been explicitly demonstrated, and relying on such assumptions in the longterm may prove to be shortsighted. It is ultimately naive to assume that continued administration of antihelminthics will be without any negative long-term effects. In Australia, strongyloidiasis primarily affects Indigenous communities, including communities from arid central Australia. This suggests that the range of Strongyloides extends beyond the reported tropical/subtropical boundary. Localized conditions that might result in this extended boundary include accumulation of moisture within housing because of malfunctioning health hardware inside and outside the house and the presence of dog fecal matter inside or outside housing areas.
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