Aim Using ethnography to study social cognition through social functioning in HD will begin to address the empirical gap in our knowledge of everyday life with HD from the perspective of both people with HD and their companions.
As ethnography moves into the messiness of real life in that the researcher is an observer of the participants in their own space and this now needs to include Covid safe strategies (i.e. online observation) risks to all parties may be seen as greater due to the nature of HD alongside exploring the intimacies of interaction remotely. Primacy needs to be given to the principle of ‘do no harm’.
Method Whilst our fears often do not come to fruition, researchers using this methodology with people with HD and their companions need to consider:
Involving a patient participant group
Building trust and rapport amongst the community through the life of the project and beyond
Tensions which may have been worsened by the pandemic
A distress strategy
Adjusting the way we as researchers do things and not the other way round
Giving more structure, planning and prompting to optimise HD engagement
Fluid revisiting of consent
Access to technology
The limitations of technology in this population
Outcome Thoughtful preparation although time consuming may enable equitable access to all interested participants but also reduce risks. As Markham notes methods = ethics.
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