A qualitative study of professional and client perspectives on information flows and decision aid use

Abstract Background: This paper explores the meanings given by a diverse range of stakeholders to a decision aid aimed at helping carers of people in early to moderate stages of dementia (PWD) to select community based respite services. Decision aids aim to empower clients to share decision making with health professionals. However, the match between health professionals’ perspectives on decision support needs and their clients’ perspective is an important and often unstudied aspect of decision aid use. Methods: A secondary analysis was undertaken of qualitative data collected as part of a larger study. The data included twelve interviews with carers of people with dementia, three interviews with expert advisors, and three focus groups with health professionals. A theoretical analysis was conducted, drawing on theories of ‘positioning’and professional identity. Results: Health professionals are seen to hold varying attitudes and beliefs about carers’ decision support needs,and these appeared to be grounded in the professional identity of each group. These attitudes and beliefs shaped their attitudes towards decision aids, the information they believed should be offered to dementia carers, and the timing of its offering. Some groups understood carers as needing to be protected from realistic information and consequently saw a need to filter information to carer clients. Conclusion: Health professionals’ beliefs may cause them to restrict information flows, which can limit carers’ability to make decisions, and limit health services’ ability to improve partnering and shared decision making. In an era where information is freely available to those with the resources to access it, we question whether health professionals should filter information.