Challenges to Exploring the Patient Perspective in Palliative Care Conversations: A Qualitative Study Among Chronic Obstructive Pulmonary Disease and Chronic Heart Failure Patients and Their Health Care Professionals.

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.

Persoonsgerichte zorg in de praktijk.

Het begrip persoonsgericht werken is niet meer weg te denken uit de zorg voor mensen met dementie. Er is echter weinig bekend over hoe zorgmedewerkers in verpleeghuizen invulling geven aan persoonsgericht werken. In deze kwalitatieve studie staat de vraag centraal op welke manier zorgprofessionals en naasten de persoonsgerichte elementen persoonsbeeld, communicatie, omgeving en waardigheid terugzien en toepassen in de dagelijkse zorg en wat zij hiervan vinden. Vijf zorgprofessionals en zeven naasten van bewoners met dementie zijn hierover geïnterviewd waarna de interviews zijn geanalyseerd met behulp van thematische analyse. Naast vier thema's die betrekking hadden op de persoonsgerichte elementen kwamen twee thema's over de randvoorwaarden voor het leveren van persoonsgerichte zorg naar voren. Professionals and naasten beschreven diverse situaties waarin persoonsgericht werd gehandeld, maar ook waarin dat niet het geval was. Vooral in de communicatie ervoeren zorgprofessionals and naasten hiaten in persoonsgerichtheid richting bewoners, waarbij naasten zelf graag meer gehoord wilden worden door de zorgprofessionals. Behalve bekwaamheid van zorgverleners bleken voldoende personeel and tijd randvoorwaarden voor persoonsgerichte zorg. Met scholing over dementie and persoonsgerichte zorg, kleine aanpassingen and betere afstemming met naasten kan echter ook met het beschikbare personeel mogelijk al veel bereikt worden in de zorg voor bewoners met dementie.

Patient coaching in secondary care: healthcare professionals' views on target group, intervention and coach profile.

BACKGROUND: Not all patients are able to communicate effectively during consultations with medical specialists. Patient coaching has shown to be effective for enhancing communication. OBJECTIVE: We aimed to get healthcare professionals' views on target groups for patient coaching, on supportive elements in patient coaching and on the necessary qualifications and profile of a patient coach, to further our knowledge on the concept of patient coaching as supportive intervention for patients in consultations with medical specialists. METHODS: We chose a qualitative research design and interviewed 18 healthcare professionals (six medical specialists, four family physicians, four community nurses and four nurse specialists/physician assistants) and analysed the verbatim transcripts using Qualitative Analysis Guide of Leuven. After a short introduction of the global concept of patient coaching and presentation of patients' perceived barriers, two interviewers structured the interview around three research questions: which patients could benefit from a patient coach, what should such a coach do and who could act like such a coach? RESULTS: Participants describe patients who could benefit from patient coaching as generally vulnerable (e.g. older age, insufficiently accompanied, lower socioeconomic status, co-morbidity and cognitive problems) but also patients who are situationally vulnerable (e.g. elicited by bad news). Patient coaching should comprise emotional and instrumental support, aiming at reducing stress and improving the processing of medical information. Patient coaching should start from the patient's home and include preparing questions, navigating to and in the hospital, recording information during the consultation, checking understanding and recalling information. Patient coaches should have at least basic medical knowledge and a higher education. CONCLUSION: Healthcare professionals believe that patient coaching by a trained professional with medical knowledge could be beneficial to patients who are stressed when visiting a medical specialist. Future research should involve the views of patients on patient coaching, focus on investigating to what extent patient coaching is able to reduce stress and support a patient in processing medical information and the preferred patient coach's profile.

Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective.

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 challenges of shared decision making in dementia care networks.

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.

Involving people with dementia in developing an interactive web tool for shared decision-making: experiences with a participatory design approach.

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.

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare.

OBJECTIVE: To explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories. DESIGN: A qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction. SETTING: Community settings and nursing homes in the Netherlands. PARTICIPANTS: 19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers). RESULTS: The participants' responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare. CONCLUSION: Shared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

Recognizing decision needs: first step for collaborative deliberation in dementia care networks.

OBJECTIVE: This study describes the process elements of decision-making for dementia, in order to enrich a model to facilitate shared decision-making for professionals working with people with dementia and their informal caregivers. METHODS: We performed a qualitative study based on secondary analysis of 117 interviews from 23 care networks consisting of people with dementia, their informal caregivers and professionals. Findings were compared to an existing model of collaborative deliberation. RESULTS: We made an enhancement to the existing collaborative deliberation model, to include: (1) constructive network engagement, (2) recognizing the need for a decision, (3) defining what to decide on, (4) developing alternatives, (5) constructing preferences through deliberation and trying out alternatives, (6) multiple preference integration, and (7) evaluating decision-making. CONCLUSION: In describing the process elements of decision-making in dementia, this empirical study proposes a modification of the model of collaborative deliberation for the context of dementia care. The adaptation highlights the special attention needed to recognize and define what to decide on, try out alternatives, and handle conflicting interests and preferences. PRACTICE IMPLICATIONS: Professionals should be attentive to mark the start of the decision-making process and work with participants towards a shared view on the pressing matters at hand.

Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events.

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.

An Interactive Web Tool for Facilitating Shared Decision-Making in Dementia-Care Networks: A Field Study.

BACKGROUND: An interactive web tool has been developed for facilitating shared decision-making in dementia-care networks. The DecideGuide provides a chat function for easier communication between network members, a deciding together function for step-by-step decision-making, and an individual opinion function for eight dementia-related life domains. The aim of this study was to gain insight in the user friendliness of the DecideGuide, user acceptance and satisfaction, and participants' opinion of the DecideGuide for making decisions. MATERIALS AND METHODS: A 5-month field study included four dementia-care networks (19 participants in total). The data derived from structured interviews, observations, and information that participants logged in the DecideGuide. Structured interviews took place at the start, middle, and end of the field study with people with dementia, informal caregivers, and case managers. Four observations of case managers' home visits focused on members' responses and use of the tool. RESULTS: (1) The user friendliness of the chat and individual opinion functions was adequate for case managers and most informal caregivers. Older participants, with or without dementia, had some difficulties using a tablet and the DecideGuide. The deciding together function does not yet provide adequate instructions for all. The user interface needs simplification. (2) User acceptance and satisfaction: everybody liked the chat's easy communication, handling difficult issues for discussion, and the option of individual opinions. (3) The DecideGuide helped participants structure their thoughts. They felt more involved and shared more information about daily issues than they had done previously. CONCLUSION: Participants found the DecideGuide valuable in decision-making. The chat function seems powerful in helping members engage with one another constructively. Such engagement is a prerequisite for making shared decisions. Regardless of participants' use of the tool, they saw the DecideGuide's added value.