As a result of the COVID-19 measures, many people experienced social isolation and a lack of meaningful contact, especially vulnerable elderly people. For a specific group of musicians specialized in person-centred artistically-led participatory practices in healthcare settings, this sparked the exploration of migrating their live practice online, by making use of video-calling technology. From a ‘lifelong learning’ perspective—which considers musicians as being capable of responding to societal change by creating new, meaningful artistic practices—such a sudden migration from offline to online, under the exceptional circumstances at the beginning of the COVID-19 pandemic, created an instant challenge for the musicians to demonstrate their flexibility and adaptability. On the other hand, the limits caused by the conditions and immediacy of this response, combined with a feeling of diminished humanness in virtual interaction, seemed to jeopardize the person-centred values that the work of this group is built upon.This article explores this issue by expanding on the musicians’ flexibility towards personcentredness and their attempts to safeguard these values when they suddenly switch from a ‘physical’ to ‘virtual’ space.
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Background The experiences of residents who have communication difficulties such as dysphasia are largely absent from the literature. Aim To illuminate the everyday experiences of four residents with severe communication difficulties living in a residential care setting in the Netherlands. Methodology & Methods A collective case study methodology was used. Seventy-five hours of observation, interview and documentary data was gathered over six weeks. Alternative strategies of communication were developed to enable the co-creation of dialogue between participants and researcher. For example, a participant who could not talk used intentionally created artwork to share her ideas with the researcher. Findings Participants' daily experiences were characterised by struggling against the constraints of the residential setting: having to wait, having unmet needs, experiencing vulnerability and uncertainty. Participants' communication difficulties exacerbated these constraints. Their experiences of struggling were sometimes ameliorated by significant social contact with family or particular staff members, and engaging in enjoyable activities. Occasionally the experiences of enjoying the here-and-now, and being 'seen' as a person by the other, would create beautiful moments in which truly person centred engagement would occur. These moments were neither articulated nor recorded, and were thus invisible after they had occurred. Similarly, the experiences of struggling against the constraints were neither acknowledged nor recorded. Significant experiences in the lives of these four residents were therefore invisible to others. The unifying theme representing the participants' daily experiences was: That which goes unsaid. Discussion It was necessary to develop communication strategies which would by-pass the researcher's assumptions and enable participants to introduce their own ideas and opinions. This ongoing process of co-creation of dialogue required work from, and trust between, participants and researcher. What is new? Expressly seeking the views of residents with communication difficulties Successfully using process consent with participants in this situation Using intentionally created artwork during data gathering in this context What has regional, national or international relevance? The findings indicate that people with communication difficulties may not receive optimal care in residential settings in the Netherlands. Methods are described which could be used by practitioners in their everyday work, and which show facilitators or practice developers how they can help carers to engage in more effective communication with this kind of resident. Additionally, this research contributes to the international discussion about ethical participation of vulnerable people in research.
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The concept of Smart Healthy Age-Friendly Environments (SHAFE) emphasises the comprehensive person-centred experience as essential to promoting living environments. SHAFE takes an interdisciplinary approach, conceptualising complete and multidisciplinary solutions for an inclusive society. From this approach, we promote participation, health, and well-being experiences by finding the best possible combinations of social, physical, and digital solutions in the community. This initiative emerged bottom-up in Europe from the dream and conviction that innovation can improve health equity, foster caring communities, and sustainable development. Smart, adaptable, and inclusive solutions can promote and support independence and autonomy throughout the lifespan, regardless of age, gender, disabilities, cultural differences, and personal choices, as well as promote happier and fairer living places.
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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 longterm 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.
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We present a fully working prototype of NOOT, an interactive tangible system which supports (sharing of) moments of reflection during brainstorms. We discuss the iterative design process, informed by embodied situated cognition theory and by user studies in context using various versions of the prototype. Apart from a potentially useful product, NOOT served as a research-tool showing how physical materials and social interactions scaffold people’s sense-making efforts, and how technology might fit in to support this process.
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Background: Patient involvement in interprofessional education (IPE) is a new approach in fostering person-centeredness and collaborative competencies in undergraduate students. We developed the Patient As a Person (PAP-)module to facilitate students in learning from experts by experience (EBEs) living with chronic conditions, in an interprofessional setting. This study aimed to explore the experiences of undergraduate students, EBEs and facilitators with the PAP-module and formulate recommendations on the design and organization of patient involvement in IPE. Methods: We collected data from students, EBEs and facilitators, through eight semi-structured focus group interviews and two individual interviews (N = 51). The interviews took place at Maastricht University, Zuyd University of Applied Sciences and Regional Training Center Leeuwenborgh. Conventional content analysis revealed key themes. Results: Students reported that learning from EBEs in an interprofessional setting yielded a more comprehensive approach and made them empathize with EBEs. Facilitators found it challenging to address multiple demands from students from different backgrounds and diverse EBEs. EBEs were motivated to improve the personcentredness of health care and welcomed a renewed sense of purpose. Conclusions: This study yielded six recommendations: (a) students from various disciplines visit an EBE to foster a comprehensive approach, (b) groups of at least two students visit EBEs, (c) students may need aftercare for which facilitators should be receptive, (d) EBEs need clear instruction on their roles, (e) multiple EBEs in one session create diversity in perspectives and (f) training programmes and peer-to-peer sessions for facilitators help them to interact with diverse students and EBEs.
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Abstract Background: To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods: First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo- Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion: Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration: Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)
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Background: Recent transitions in long-term care in the Netherlands have major consequences for community- dwelling older adults. A new paradigm expects them to manage and arrange their own care and support as much as possible. Technology can support this shift. A study has been conducted to explore the needs of community- dwelling frail older adults with regard to an online platform. An existing platform was subsequently modified, based upon these needs, resulting in an online community care platform (OCC-platform) comprising of care, health, and communication functions. The purpose of this platform was to support frail older adults in their independence and functioning, by stimulating self-care and providing reliable information, products and services. Methods: The study used a User-Centred Design. The development processes involved the following steps: Step 1) Identification of the User Requirements. To assess the user requirements, direct observations (N = 3) and interviews (N = 14) were performed. Step 2) Modification of an Existing Online Platform. Based upon Step 1, available online platforms were explored to determine whether an existing useful product was available. Two companies collaborated in modifying such a platform; Step 3) Testing the Modified Platform. A total of 73 older adults were invited to test a prototype of the OCC-platform during 6 months, which comprised of two phases: (1) a training phase; and (2) a testing phase. Results: An iterative process of modifications resulted in an interactive software concept on a Standard PC, containing 11 Functions. The Functions of ‘contacts’, ‘services’ and ‘messaging’, were by far, the most frequently used. The use was at its highest during the first 2 weeks of the testing and then its use steadily declined. The vast majority of the subjects (94%) were positive about the usability of the platform. Only a minority of the subjects (27%) indicated that the platform had added value for them. Conclusion: The overall prospect was that an OCC-platform can contribute to the social participation and the self-management competencies of frail older adults, together with their social cohesion in the community. In order to validate these prospects, further research is needed on the characteristics and the impact of online platforms.
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Key takeaways from the project underscore the importance of fostering long-term collaborations between technical experts, communities, and institutional partners. By integrating technical innovation with human-centred design, the SUSTENANCE project has not only advanced renewable energy adoption but also established a framework for empowering communities to actively participate in sustainable energy transitions. Moving forward, the lessons learned, and solutions developed provide a solid foundation for addressing future challenges in energy system decarbonization and resilience.
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