Disparate positioning of carers is evident in the expressed perspectives of carers, health professionals and expert advisers. The positioning of carers as either empowered or passive was clearly linked to beliefs about the appropriateness of providing realistic information and the type of support that carers need when making decisions. In turn, these beliefs appeared to be located within professional roles and ideologies of care. Variations in carer positioning by the experts and health professionals in this study are attributable both to the context and nature of their interactions with carers and to the norms of each profession. Their divergent views support previous findings [13
] that roles and settings are important contexts that can influence practices, and that we need to understand how health professionals other than physicians view shared decision making [6
The views of community nurses were closest to those of carers, since they understood the DA as providing information and decision support that would allow carers to make service decisions, with or without health professional assistance. It may be that community nurses could see the DA as an adjunct and of assistance in their work because their home visiting role gives them access to the situated contexts that inform the reality of carers' circumstances. The counsellors, support workers and expert advisors, however, positioned themselves within a therapeutic model, in which they were experts and the carers were clients. This positioning influenced their beliefs about potentially confronting information, which was seen as something that needed to be provided (often in a filtered form) by experts when they judged the time to be right. The carer was viewed as either an un-well client or a non-coping client who needed to be helped. In expressing this positioning, counselors and support workers used language that was embedded in their occupational roles and reflected traditionally held views of patients within the medical model of care.
By contrast, carers themselves viewed the DA from a position of independence from health professionals, regarding it as a resource to provide them with information and skills in making service decisions. Like Wackerbarth [24
], we found that many carers view themselves as competent in relation to services decision making and want information that will extend that competence. These data also resonate with Wackerbarth's [24
] finding that uncertainty and lack of information makes it harder for carers to plan. It also suggests that any filtering of important realistic information about dementia can limit carers' agency, as it requires them to make relatively uninformed decisions. In practice, realistic information, however confronting, constitutes a positive resource for carers' deliberative judgments, and restricting this resource impedes their ability to weigh up all factors relevant to their circumstances.
The data further indicate that the beliefs of some health professionals may lead them to filter the provision of realistic information to carers, a finding also mentioned by Gravel, Legare and Graham [6
]. The argument that carers' needs were being met or that carers needed protection from distressing information were part of a broader positioning of carers as passive service recipients. Such positioning maintains a status quo where health professionals control information [23
] and the need to discuss difficult topics is avoided [37
]. Our result fit with other findings that carers with knowledge of the facts of dementia demonstrate decreased rates of depression, more realistic expectations of outcomes, increased feelings of decision competence, and greater use of positive comparisons [25
]. Hypotheses as to the causes of the association between information and anxiety for some carers include the possibilities that carers may become increasingly anxious if information is vague or not forthcoming [26
] or that information augments carers' anticipation of loss [17
]. Proctor et al. [26
] suggest that the solution may be to provide more emotional support together with disturbing information. Independently of this debate, the empirical evidence indicates that carers want realistic information earlier in the disease [17
Further research is needed to better understand why some health professionals limit information when evidence suggests that most carers' preference is for realistic and early information. Enhanced awareness of how the flow of decision support resources can facilitate or impede carers' decisional capacity is needed to inform the development and implementation of mechanisms such as DAs and innovative professional roles. While these results provide food for thought for service providers, we acknowledge the limitations of our study. Firstly, the fact that we did not collect these data specifically to consider the issue of carer positioning, nor directly observe carer/health professional interactions, meant that more in-depth information directly relating to on the issues raised in this paper was not elicited. We therefore recommend further research directly focused on this topic. Secondly our small convenience sample means that our results are not generalizable to any population of carers and health workers, and wider studies are needed. Nevertheless, as Myers [38
] observes, small qualitative studies can provide a more personal understanding of phenomena that are valuable in themselves. In this tradition, we are confident that this study constitutes a modest but worthwhile contribution to the decision-making literature.