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

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. -