Aim Using ethnography to explore social functioning in HD
Method In 2016 Stout et al called for researchers studying cognition in HD to incorporate methods which captured the ‘messiness’ of real life. This is a call reflected by researchers in other fields who note particularly that social cognition needs this lens too. In HD research there is an empirical gap in our knowledge of social cognition in the everyday lives of people with HD and if we are to understand what this looks like, we need to ‘be’ with people with HD and their companions.
As a methodology arising from anthropology in which the researcher is embedded over time in the space of the community being studied, listening to what is being said and observing what is being done; ethnography can provide this. It’s been used extensively in fields where the gaps afforded by more quantitative approaches need ‘thicker’ description and has proven complementary but most of all insightful.
Outcome An altered project to reflect the limitations of the pandemic will begin in the next year which will use ethnography with people with HD and their companions to explore social functioning in everyday life – to look at the breadth of potential concerns but also barriers and facilitators of these important skills.
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