ABSTRACT
Background: Coping with dementia can imply particular challenges for people with a migration background due to diversity in their life course, personal characteristics, and living environment. Some of the services available for people with dementia include digital technologies for care, providing health services, and maintaining or increasing participation, independence, and safety. This study aimed to explore the role of digital technology in coping with dementia in the lives of older adults with a migration background, and the possibilities to engage and collaborate with older adults. Methods: This study combined a qualitative interview-based approach with citizen science principles in the design and execution of a project studying the use of Anne4Care. Results and discussion: Participants valued that technology should provide health benefits and fit into aspects of their daily lives. Anne4Care was considered helpful in staying independent and connecting to loved ones in their country of birth. The participants needed to learn new competencies to work with the device, and not all had the material prerequisites, such as an internet connection. Still, this learning process was considered purposeful in their life, and the virtual assistant could be integrated into care and daily practices. The involvement of the older adults with dementia as co-researchers made them feel valuable and as equal partners during this research. An important prerequisite for the involvement of older adults with a migration background was existing relations with carers and care organizations. Conclusion: Digital care technologies to cope with dementia can become a valuable part of care practices in the lives of older adults with a migration background. Involving older adults in the development of technology, acknowledging their expertise and needs, and working together in short iterations to adapt the technology for their specific needs and situations were experienced as valuable by the researchers, older adults, and care professionals.
Subject(s)
Dementia , Digital Technology , Humans , Aged , Health Services , Caregivers , Adaptation, PsychologicalABSTRACT
BACKGROUND: 'What matters to me' is a five-category preference elicitation tool to assist clients and professionals in choosing long-term care. This study aimed to evaluate the use of and experiences with this tool. METHODS: A mixed-method process evaluation was applied. Participants were 71 clients or relatives, and 12 professionals. They were all involved in decision-making on long-term care. Data collection comprised online user activity logs (N = 71), questionnaires (N = 38) and interviews (N = 20). Descriptive statistics was used for quantitative data, and a thematic analysis for qualitative data. RESULTS: Sixty-nine per cent of participants completed one or more categories in an average time of 6.9 (±0.03) minutes. The tool was rated 6.63 (±0.88) of 7 in the Post-Study System Usability Questionnaire (PSSUQ). Ninety-five per cent experienced the tool as useful in practice. Suggestions for improvement included a separate version for relatives and a non-digital version. Although professionals thought the potentially extended consultation time could be problematic, all participants would recommend the tool to others. CONCLUSION: 'What matters to me' seems useful to assist clients and professionals with preference elicitation in long-term care. Evaluation of the impact on consultations between clients and professionals by using 'What matters to me' is needed.
Subject(s)
Long-Term Care , Patient Preference , Health Services , Humans , Netherlands , Surveys and QuestionnairesABSTRACT
Aim: The aim was to gain insight in the preferences of people with type 2 diabetes mellitus regarding the moments and methods of patient participation in the development and application of eHealth, and which factors influence this. Methods: A digital questionnaire with both closed and open questions was distributed via various online platforms and the newsletter of the Diabetes Association in the Netherlands. Information was collected on: 1) willingness to participate; 2) preferences about the method of participation; 3) influencing factors on participation, including motivation, competence, resources, social influences, and outcome expectations; 4) background characteristics. Results: 160 questionnaires were analysed. More than three quarter of the respondents intend to be involved in patient participation. Most respondents prefer solo participation methods over group participation, respectively 93% and 46%. Half of the respondents feel that they have sufficient knowledge to participate, and 40% feels that they can provide valuable input. As compensation for participation, participants prefer to use new technologies for free. Conclusion: As people with diabetes type 2 differ in their preferences for moments and methods of participation, it is recommended to offer different methods of participation and types of compensation in the process from development to application of eHealth.
ABSTRACT
PURPOSE: Collaborative deliberation comprises personal engagement, recognition of alternative actions, comparative learning, preference elicitation, and preference integration. Collaborative deliberation may be improved by assisting preference elicitation during shared decision-making. This study proposes a framework for preference elicitation to facilitate collaborative deliberation in long-term care consultations. METHODS: First, a literature overview was conducted comprising current models for the elicitation of preferences in health and social care settings. The models were reviewed and compared. Second, qualitative research was applied to explore those issues that matter most to clients in long-term care. Data were collected from clients in long-term care, comprising 16 interviews, 3 focus groups, 79 client records, and 200 online client reports. The qualitative analysis followed a deductive approach. The results of the literature overview and qualitative research were combined. RESULTS: Based on the literature overview, five overarching domains of preferences were described: "Health", "Daily life", "Family and friends", "Living conditions", and "Finances". The credibility of these domains was confirmed by qualitative data analysis. During interviews, clients addressed issues that matter in their lives, including a "click" with their care professional, safety, contact with loved ones, and assistance with daily structure and activities. These data were used to determine the content of the domains. CONCLUSION: A framework for preference elicitation in long-term care is proposed. This framework could be useful for clients and professionals in preference elicitation during collaborative deliberation.
ABSTRACT
BACKGROUND: During the process of decision-making for long-term care, clients are often dependent on informal support and available information about quality ratings of care services. However, clients do not take ratings into account when considering preferred care, and need assistance to understand their preferences. A tool to elicit preferences for long-term care could be beneficial. Therefore, the aim of this qualitative descriptive study is to understand the user requirements and develop a web-based preference elicitation tool for clients in need of long-term care. METHODS: We applied a user-centred design in which end-users influence the development of the tool. The included end-users were clients, relatives, and healthcare professionals. Data collection took place between November 2017 and March 2018 by means of meetings with the development team consisting of four users, walkthrough interviews with 21 individual users, video-audio recordings, field notes, and observations during the use of the tool. Data were collected during three phases of iteration: Look and feel, Navigation, and Content. A deductive and inductive content analysis approach was used for data analysis. RESULTS: The layout was considered accessible and easy during the Look and feel phase, and users asked for neutral images. Users found navigation easy, and expressed the need for concise and shorter text blocks. Users reached consensus about the categories of preferences, wished to adjust the content with propositions about well-being, and discussed linguistic difficulties. CONCLUSION: By incorporating the requirements of end-users, the user-centred design proved to be useful in progressing from the prototype to the finalized tool 'What matters to me'. This tool may assist the elicitation of client's preferences in their search for long-term care.
Subject(s)
Decision Making , Long-Term Care/psychology , Patient Preference/psychology , Software Design , User-Computer Interface , Adult , Aged , Female , Humans , Male , Middle Aged , Netherlands , Qualitative ResearchABSTRACT
BACKGROUND: Clients facing decision-making for long-term care are in need of support and accessible information. Construction of preferences, including context and calculations, for clients in long-term care is challenging because of the variability in supply and demand. This study considers clients in four different sectors of long-term care: the nursing and care of the elderly, mental health care, care of people with disabilities, and social care. The aim is to understand the construction of preferences in real-life situations. METHOD: Client choices were investigated by qualitative descriptive research. Data were collected from 16 in-depth interviews and 79 client records. Interviews were conducted with clients and relatives or informal caregivers from different care sectors. The original client records were explored, containing texts, letters, and comments of clients and caregivers. All data were analyzed using thematic analysis. RESULTS: Four cases showed how preferences were constructed during the decision-making process. Clients discussed a wide range of challenging aspects that have an impact on the construction of preferences, e.g. previous experiences, current treatment or family situation. This study describes two main characteristics of the construction of preferences: context and calculation. CONCLUSION: Clients face diverse challenges during the decision-making process on long-term care and their construction of preferences is variable. A well-designed tool to support the elicitation of preferences seems beneficial.
