Shared decision or decision shared? Interactional trajectories in Huntington’s disease management clinics

Authors

  • Donna Duffin University Hospital of Wales
  • Srikant Sarangi Aalborg University

DOI:

https://doi.org/10.1558/cam.36402

Keywords:

activity analysis, carer types, Huntington’s disease (HD) management clinic, patient-centredness, shared decision making, step-wise structure, temporal

Abstract

Shared decision making (SDM) as a corrective to paternalism - particularly in relation to treatment options - is a much-discussed theme in healthcare research and practice. The communicative/interactional dimensions of SDM have lately received scholarly attention, albeit limited to a few clinic sites. The Huntington's disease (HD) management clinic, which is the site of this study, involves the co-presence of family members in their carer role, since the patient with HD may lack the cognitive ability to participate adequately in the decision-making process. We closely examine 12 audio-recorded clinic consultation transcripts, using the combined framework of theme-orientated discourse analysis and activity analysis. Our analytical focus is on how decisions are formulated and shared, or not shared, by the co-participants (the consultant, the patient and the carers) and the extent to which the consultant and the carers negotiate their 'expert' assessments of the patient's current and future management scenarios. We first outline a step-wise structure of decision making - to include problem designation, problem confirmation, generation of options and their assessment, and formulation and confirmation of decision. Contrary to how SDM is represented in various models in the literature, these different steps are interactionally dispersed and become negotiable in particular clinic sessions. Our findingssuggest that the consultant routinely uses three main strategies to steer the decision-making process: foregrounding the decision itself, foregrounding the temporal dimension and foregrounding the person/ carer dimension. Moreover, carer participation differs depending on the carer's relationship with the patient and other contingent matters. -

Author Biographies

Donna Duffin, University Hospital of Wales

Donna Duffin is a Registered Genetic Counsellor specialising in Neurogenetics. She gained her Master's Degree in Genetic Counselling at Cardiff University in 2009. In the same year, she began working as a trainee Genetic Counsellor in the Bristol Genetics Service. Since 2012, she has been working in the All Wales Genetics Service.

Srikant Sarangi, Aalborg University

Srikant Sarangi is Professor in Humanities and Medicine and Director of the Danish Institute of Humanities and Medicine (DIHM) at Aalborg University, Denmark. Between 1993 and 2013, he was Professor in Language and Communication and Director of the Health Communication Research Centre at Cardiff University (UK), where he continues as Honorary Professor. Beginning 2017, he is also Adjunct Professor at Norwegian University of Science and Technology (NTNU), Visiting Professor at University of Jyväskylä, Finland and Visiting Professor at the College of Medicine, Qatar University. In 2012, he was awarded the title of ‘Fellow' by the Academy of Social Sciences, UK. He is editor of Text & Talk, Communication & Medicine and Journal of Applied Linguistics and Professional Practice.

References

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Published

2018-10-26

How to Cite

Duffin, D., & Sarangi, S. (2018). Shared decision or decision shared? Interactional trajectories in Huntington’s disease management clinics. Communication and Medicine, 14(3), 201–216. https://doi.org/10.1558/cam.36402

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