April 7-9, 2022 • Hyatt Regency • Lexington, KY
Communication Strategies to Promote Comprehensive Well-being
Communication Strategies to Promote Comprehensive Well-being
Abstract: Supporting Representative Shared Decision Making in Dementia: Relatives’ Health Information Seeking Behavior
Dementia is a huge challenge, both for the patients and for their relatives, who have to deal with the new situation. There are 50 million active cases worldwide, with a strong upward trend [1,2]. After the onset of the disease, relatives and friends are inevitably confronted with its consequences and are often faced with the challenge of providing support to their affected loved ones[3,4]. That support includes, besides taking over the (physical) nursing activities, making important decisions for the patient that he or she can no longer take on him or herself. A key approach describing such collaborative decisions is shared decision making, originally dyadic (doctor-patient) [5]. To take into account the circumstance of the lack of individual decision-making ability by the patient, the dyadic model can be transformed into a triadic model (patient-relative/friend-doctor)[6]. The basis for such participatory decision making is the informed patient or his/her representative (e.g. family member). There are numerous ways to receive health-related information, both actively and passively [7]. Mass media (newspapers, television) might play a major role in passive and occasional information intake, while prepared information materials online and offline might be more relevant in active seeking behavior [e.g. 8 for overview]. But available information alone is not enough, it must also be considered in the decision-making-process [9]. Relative’s information seeking on behalf of patients might be highly dependent on how present the topic already is and how deeply one has dealt with the issue in advance (preventive) to gain more knowledge about the disease. The intention to obtain information from certain sources may differ greatly from the actual information considered in a case of illness [10]. At this point, it seems important to distinguish between affected relatives (family member with dementia) and non-affected relatives without a previous case of the disease. Therefore, this study analyses the following research questions. RQ1: How active or passive and where do family members of dementia patients obtain information about dementia to strengthen their participatory decision making? RQ2: Is there a difference between the planned information seeking of relatives not yet affected and the information used by affected? To answer these questions, two Online-Surveys are conducted. The first one is a pre-study to get an insight into the general information behavior, the second study deals with the information seeking behavior and the actual decision making. Both studies are representative for German population. First results from the pre-study (N = 1,059) showed that a lot of information is received passively via mass media; prepared materials are used comparatively rarely. Information on the Internet are very popular (RQ1); surprisingly, doctoral consultations are rarely used by those affected, while non-affected still attribute a high importance to doctors. Discrepancies between the intended information seeking of non-affected and those who had already sought information for their family member with dementia became visible here (RQ2). Since the second study is currently in progress, results will be available for the conference and will improve our understanding of information behavior for decision-making of family members.