Expression of patient and caregiver uncertainty in view of decision-making in online health communities

Objectives: On the backdrop of the current debate on shared-decision making in healthcare, we are interested in understanding how uncertainty is managed when patients and/or their caregivers resort to online health communities (OHCs) for advice regarding decisions on aspects of the disease they are not fully sure of. More specifically, we present initial results concerning the expression of uncertainty in OHCs regarding decisions that have to be made about a specific illness. Our goal is to observe how patients and/or their caregivers express uncertainty regarding information they received from specialists. This can help us understand how non-experts try to cope with information they do not fully understand. Methods: Based on a collection of interactional data taken from two Italian OHCs, our analysis focuses on the sequences in which someone asks for advice on a certain line of action and obtains an answer. We follow a mainly qualitative approach, which includes case-based qualitative analyses. More specifically, we observe uses and functions of some lexical items (evidentemente (lit., evidently), teoricamente (lit., theoretically)) and syntactic structures (specifically clauses containing the verb dire (to say)) that convey a sense of uncertainty in relation to information provided by others. Results: Our results show different types of uncertainty, providing insights into the effort non-experts make in dealing with expert knowledge and unclear situations determined by the illness and its management. Implications for clinical practice: Our results can be used to improve healthcare professionals’ training regarding their role as mediators between specialized and everyday knowledge.