Background In HD, deducing what another person means through their facial emotions is thought to erode as the illness progresses. Emotional recognition data is now being collected in longitudinal studies (Henley, Novak et al. 2012).
Aims Showing that the underlying skills of social cognition are impaired in HD through quantitative means leaves a large gap in our knowledge (Bora, Velakoulis et al. 2016). We do not know how the person with HD and those who live with them are experiencing this change, and how it is played out in the many spaces of mundane life. This project aims to capture this ‘social functioning’.
Methods Ethnography which employs both participant observation and interacting with participants in a naturalist setting over an extended period will be used. Additionally, using a non-word based participatory method such as photo elicitation (Lorenz 2011) will optimise the views of people with HD who may have communication and cognitive problems. A social convoy map (Sherman et al (2015)) may also be used to establish changes over time.
Results/conclusions A submission for the project to ethics review will be take place shortly following a consultation with the UK HDA Public Involvement group – HD Voice.
Approximating the real world should allow for a more nuanced person-centred and in-depth portrait of how these concerns affect overall functioning in HD; allowing clinicians to develop more sensitive assessments to capture these issues in way that are meaningful to the community and developing interventions which are aimed at reducing the concerns raised in the context in which they occur.
. Bora E, Velakoulis D, Walterfang M. Social cognition in Huntington’s disease: A meta-analysis. Behavioural brain research2016;297:131.
. Henley SM, Novak MJ, Frost C, King J, Tabrizi SJ, Warren JD. Emotion recognition in Huntington’s disease: a systematic review. Neuroscience & Biobehavioral Reviews2012;36(1):237–253.
. Lorenz LS. A way into empathy: a ’case’ of photo- elicitation in illness research. Health2011 (London, England: 1997);15(3):259.
. Sherman CW, Wan WH, Antonucci TC. Social convoy model. The Encyclopedia of Adulthood and Aging [SK Whitbourne (Ed.)]. 2015.
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