Search

Purpose: The aim of this study was at gaining insight into the participatory design approach of involving people with dementia in the development of the DecideGuide, an interactive web tool facilitating shared decision-making in their care networks.Method: An explanatory case study design was used when developing the DecideGuide. A secondary analysis focused on the data gathered from the participating people with dementia during the development stages: semi-structured interviews (n = 23), four focus group interviews (n = 18), usability tests (n = 3), and a field study (n = 4). Content analysis was applied to the data.Results: Four themes showed to be important regarding the participation experiences of involving people with dementia in research: valuable feedback on content and design of the DecideGuide, motivation to participate, perspectives of people with dementia and others about distress related to involvement, and time investment.Conclusions: People with dementia can give essential feedback and, therefore, their contribution is useful and valuable. Meaningful participation of people with dementia takes time that should be taken into account. It is important for people with dementia to be able to reciprocate the efforts others make and to feel of significance to others. Implications for Rehabilitation People with dementia can contribute meaningfully to the content and design and their perspective is essential for developing useful and user-friendly tools.Participating in research activities may contribute to social inclusion, empowerment, and quality of life of people with dementia. [ABSTRACT FROM AUTHOR]

ABSTRACTBackground:Decision making is an important part of managing one's life with dementia. Shared decision making is the preferred way of involving people in decisions. Our study aimed to describe the challenges of shared decision making in dementia care networks.Methods: A multi-perspective qualitative study using face-to-face interviews with 113 respondents in 23 care networks in the Netherlands consisting of 23 people with dementia, 44 of their informal caregivers, and 46 of their professional caregivers. The interview guide addressed the decision topics, who were involved in the decision making and their contributions to the decision making. We used content analysis to delineate categories and themes.Results: The themes and categories that emerged are: (1) adapting to a situation of diminishing independence, which includes the continuous changes in the care network, resulting in shifting decision-making roles and the need for anticipating future decisions; and (2) tensions in network interactions which result from different perspectives and interests and which require reaching agreement about what constitutes a problem by exchanging information in the care network.Conclusion: The challenges in dementia care networks relate to all dimensions of social health. They have implications for a model of shared decision making in dementia care networks. Such a model requires flexibility regarding changing capabilities to preserve the autonomy of the person with dementia. It needs working towards a shared view about what constitutes a problem in the situation. It asks for professionals to advocate for the involvement of people with dementia by helping them participate in ways that strengthen their remaining capacities. [ABSTRACT FROM AUTHOR]

This prospective multiperspective study provides insight into the decision trajectories of people with dementia by studying the decisions made and related key events. This study includes three waves of interviews, conducted between July 2010 and July 2012, with 113 purposefully selected respondents (people with beginning to advanced stages of dementia and their informal and professional caregivers) completed in 12 months (285 interviews). Our multilayered qualitative analysis consists of content analysis, timeline methods, and constant comparison. Four decision themes emerged—managing daily life, arranging support, community living, and preparing for the future. Eight key events delineate the decision trajectories of people with dementia. Decisions and key events differ between people with dementia living alone and living with a caregiver. Our study clarifies that decisions relate not only to the disease but to living with the dementia. Individual differences in decision content and sequence may effect shared decision-making and advance care planning. [ABSTRACT FROM AUTHOR]

Objectives: The aim of this study was to reveal the challenges faced in exploring the patient's perspective as experienced by patients with chronic obstructive pulmonary disease or chronic heart failure and their health care professionals (HCPs), including the circumstances under which these challenges are experienced during palliative care conversations., Methods: This is a qualitative, explorative study in the Netherlands using purposive sampling to create diversity in demographic variables of both patients and HCPs. Semistructured interviews with 12 patients and 7 HCPs were carried out with the use of topic lists. All interviews were audiorecorded, verbatim transcribed, and thematically analyzed., Results: Patients find it challenging to express their wishes, preferences, and boundaries and say what is really preoccupying them, especially when they do not feel a good connection with their HCP. HCPs find it challenging to get to know the patient and discuss the patient's perspective particularly when patients are not proactive, open or realistic, or unable to understand or recall information., Conclusions: Patients and HCPs seem to share the same aim: patients want to be known and understood and HCPs want to know and understand the patient as a unique individual. At the same time, they seem unable to personalize their conversations. To move beyond this impasse patients and HCPs need to take steps and be empowered to do so., Competing Interests: No competing financial interests exist., (© Annet Olde Wolsink-van Harlingen et al., 2024; Published by Mary Ann Liebert, Inc.)

Background: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved., Objective: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making., Research Design and Methods: We used the IP-SDM model to content-code and analyze data from 4 care networks, each consisting of a PWD, 2 informal and 2 formal caregivers., Results: Decision making in all networks corresponded to most IP-SDM elements, but never included all network members. Decision making was guided by the wishes of the PWD, but their actual involvement decreased over time., Discussion: Results show that while the IP-SDM model was helpful, the options change with cognitive decline and moving to a nursing home can become inevitable in spite of preferences., Implications: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions., (© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)