The evaluation of a decision support system integrating assistive technology for people with dementia at home.

Introduction: With a decreasing workforce of carers and a transition from care homes to home care, people with dementia (PwD) increasingly rely on informal caregivers (ICs) and assistive technologies (ATs). There is growing evidence that ATs in the home environment can reduce workload for formal carers (FCs) and ICs, reduce care costs, and can have a positive influence on quality of life (QoL) for PwD and their caregivers. In practice, using multiple ATs still often implies using different separate point solutions and applications. However, the integral, combined use of the data generated using various applications can potentially enhance the insight into the health and wellbeing status of PwD and can provide decision support for carers. The purpose of the current study was to evaluate the use of a DSS that integrated multiple ATs into one dashboard through a small-scale field study. Methods: The current study presents the formative evaluation of a Decision Support System (DSS) connected to multiple ATs. This DSS has been developed by means of co-creation during an international project. The DSS provides an insight into the physical and cognitive status of a PwD, as well as an insight into sleep activity and general wellbeing. Semi-structured interview sessions were held in three countries (Netherlands, Italy, and Taiwan) with 41 participants to gain insight into the experiences of formal and informal carers and PwD with both the ATs and the DSS Alpha prototype dashboard. Results: The results showed that participants using the DSS were satisfied and perceived added value and a fit with certain care demands from the PwD. In general, ICs and FCs have limited insight into the status of PwD living independently at home, and in these moments, the DSS dashboard and AT bundle can provide valuable insights. Participants experienced the DSS dashboard as well-organized and easy to navigate. The accuracy of the data displayed in the dashboard is important, the context, and (perceived) privacy issues should be tackled according to all users. Furthermore, based in the insight gained during the evaluation a set of design improvements was composed which can be used to further improve the DSS for the Beta evaluation. Discussion and conclusion: The current paper evaluates a possible solution for excess AT usage and how the use of a DSS which integrated multiple AT into one single technology could support caregivers in providing care for PwD. The formative evaluation scrutinized the integration of the developed DSS and the composed bundle of ATs across diverse cultural contexts. Insights from multi-center observations shed light on user experiences, encompassing overall usability, navigational efficacy, and attitudes toward the system. FCs and ICs expressed positivity toward the DSS dashboard's design and functionalities, highlighting its utility in remote monitoring, tracking changes in the person's abilities, and managing urgent situations. There is a need for personalized solutions and the findings contribute to a nuanced understanding of DSS and AT integration, providing insights for future developments and research in the field of DSS for the care of PwD.

AI-Assisted Decision-Making in Long-Term Care: Qualitative Study on Prerequisites for Responsible Innovation.

BACKGROUND: Although the use of artificial intelligence (AI)-based technologies, such as AI-based decision support systems (AI-DSSs), can help sustain and improve the quality and efficiency of care, their deployment creates ethical and social challenges. In recent years, a growing prevalence of high-level guidelines and frameworks for responsible AI innovation has been observed. However, few studies have specified the responsible embedding of AI-based technologies, such as AI-DSSs, in specific contexts, such as the nursing process in long-term care (LTC) for older adults. OBJECTIVE: Prerequisites for responsible AI-assisted decision-making in nursing practice were explored from the perspectives of nurses and other professional stakeholders in LTC. METHODS: Semistructured interviews were conducted with 24 care professionals in Dutch LTC, including nurses, care coordinators, data specialists, and care centralists. A total of 2 imaginary scenarios about AI-DSSs were developed beforehand and used to enable participants articulate their expectations regarding the opportunities and risks of AI-assisted decision-making. In addition, 6 high-level principles for responsible AI were used as probing themes to evoke further consideration of the risks associated with using AI-DSSs in LTC. Furthermore, the participants were asked to brainstorm possible strategies and actions in the design, implementation, and use of AI-DSSs to address or mitigate these risks. A thematic analysis was performed to identify the opportunities and risks of AI-assisted decision-making in nursing practice and the associated prerequisites for responsible innovation in this area. RESULTS: The stance of care professionals on the use of AI-DSSs is not a matter of purely positive or negative expectations but rather a nuanced interplay of positive and negative elements that lead to a weighed perception of the prerequisites for responsible AI-assisted decision-making. Both opportunities and risks were identified in relation to the early identification of care needs, guidance in devising care strategies, shared decision-making, and the workload of and work experience of caregivers. To optimally balance the opportunities and risks of AI-assisted decision-making, seven categories of prerequisites for responsible AI-assisted decision-making in nursing practice were identified: (1) regular deliberation on data collection; (2) a balanced proactive nature of AI-DSSs; (3) incremental advancements aligned with trust and experience; (4) customization for all user groups, including clients and caregivers; (5) measures to counteract bias and narrow perspectives; (6) human-centric learning loops; and (7) the routinization of using AI-DSSs. CONCLUSIONS: The opportunities of AI-assisted decision-making in nursing practice could turn into drawbacks depending on the specific shaping of the design and deployment of AI-DSSs. Therefore, we recommend considering the responsible use of AI-DSSs as a balancing act. Moreover, considering the interrelatedness of the identified prerequisites, we call for various actors, including developers and users of AI-DSSs, to cohesively address the different factors important to the responsible embedding of AI-DSSs in practice.

Making Co-Design More Responsible: Case Study on the Development of an AI-Based Decision Support System in Dementia Care.

BACKGROUND: Emerging technologies such as artificial intelligence (AI) require an early-stage assessment of potential societal and ethical implications to increase their acceptability, desirability, and sustainability. This paper explores and compares 2 of these assessment approaches: the responsible innovation (RI) framework originating from technology studies and the co-design approach originating from design studies. While the RI framework has been introduced to guide early-stage technology assessment through anticipation, inclusion, reflexivity, and responsiveness, co-design is a commonly accepted approach in the development of technologies to support the care for older adults with frailty. However, there is limited understanding about how co-design contributes to the anticipation of implications. OBJECTIVE: This paper empirically explores how the co-design process of an AI-based decision support system (DSS) for dementia caregivers is complemented by explicit anticipation of implications. METHODS: This case study investigated an international collaborative project that focused on the co-design, development, testing, and commercialization of a DSS that is intended to provide actionable information to formal caregivers of people with dementia. In parallel to the co-design process, an RI exploration took place, which involved examining project members' viewpoints on both positive and negative implications of using the DSS, along with strategies to address these implications. Results from the co-design process and RI exploration were analyzed and compared. In addition, retrospective interviews were held with project members to reflect on the co-design process and RI exploration. RESULTS: Our results indicate that, when involved in exploring requirements for the DSS, co-design participants naturally raised various implications and conditions for responsible design and deployment: protecting privacy, preventing cognitive overload, providing transparency, empowering caregivers to be in control, safeguarding accuracy, and training users. However, when comparing the co-design results with insights from the RI exploration, we found limitations to the co-design results, for instance, regarding the specification, interrelatedness, and context dependency of implications and strategies to address implications. CONCLUSIONS: This case study shows that a co-design process that focuses on opportunities for innovation rather than balancing attention for both positive and negative implications may result in knowledge gaps related to social and ethical implications and how they can be addressed. In the pursuit of responsible outcomes, co-design facilitators could broaden their scope and reconsider the specific implementation of the process-oriented RI principles of anticipation and inclusion.

Sensory, Affective, and Social Experiences with Haptic Devices in Intramural Care Practice.

Previous work has shown that technology can facilitate the communication of emotions, social touch, and social presence through haptic devices, meaning devices that provide a haptic stimulation. However, for special user groups living in long-term care facilities, such as people with dementia, the applications of these haptic devices are not apparent. The aim of this study is to understand how haptic devices can be used in intramural care facilities in times of social isolation, focusing on haptic devices that utilize haptic sensation. Five haptic devices were tested at three care facilities. Insights from this study highlight the potential of haptic devices to enhance sensory, affective, and social experiences during video calling between residents and their relatives. Moreover, the importance of the tactile sensation and form factor of haptic devices in the care context is addressed, along with insights on how to create the appropriate atmosphere during video calling.

Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health: Results of the European Union Funded "ME-WE" Online Survey Study on Adolescent Young Carers in Switzerland.

This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15-17 in Switzerland, based on data collected within the Horizon 2020 project 'Psychosocial support for promoting mental health and well-being among AYCs in Europe' (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.

Toward Responsible Artificial Intelligence in Long-Term Care: A Scoping Review on Practical Approaches.

BACKGROUND AND OBJECTIVES: Artificial intelligence (AI) is widely positioned to become a key element of intelligent technologies used in the long-term care (LTC) for older adults. The increasing relevance and adoption of AI has encouraged debate over the societal and ethical implications of introducing and scaling AI. This scoping review investigates how the design and implementation of AI technologies in LTC is addressed responsibly: so-called responsible innovation (RI). RESEARCH DESIGN AND METHODS: We conducted a systematic literature search in 5 electronic databases using concepts related to LTC, AI, and RI. We then performed a descriptive and thematic analysis to map the key concepts, types of evidence, and gaps in the literature. RESULTS: After reviewing 3,339 papers, 25 papers were identified that met our inclusion criteria. From this literature, we extracted 3 overarching themes: user-oriented AI innovation; framing AI as a solution to RI issues; and context-sensitivity. Our results provide an overview of measures taken and recommendations provided to address responsible AI innovation in LTC. DISCUSSION AND IMPLICATIONS: The review underlines the importance of the context of use when addressing responsible AI innovation in LTC. However, limited empirical evidence actually details how responsible AI innovation is addressed in context. Therefore, we recommend expanding empirical studies on RI at the level of specific AI technologies and their local contexts of use. Also, we call for more specific frameworks for responsible AI innovation in LTC to flexibly guide researchers and innovators. Future frameworks should clearly distinguish between RI processes and outcomes.

Usability and Feasibility Assessment of a Social Assistive Robot for the Older People: Results from the GUARDIAN Project.

In Italy, many people aged over 65 cannot live independently, causing an overall decrease in their quality of life and a need for social and health care. Due to the lack of both formal and informal caregivers, technological solutions become of paramount importance in this scenario. This article describes the user-centered development of the GUARDIAN ecosystem, consisting of a social robot integrated with two mobile applications which aim to monitor, coach, and keep the older user company in order to prolong his/her independence at home. In particular, the advancements from the alpha to the beta prototype of the ecosystem are described, achieved through the feedback collected from 41 end users-older people and their carers-that have tested the system for 6 weeks. By enhancing human-robot interaction, a positive improvement in terms of usability and acceptability of the system was retrieved. However, to increase the perceived usefulness and the impact on older users' lives, it is necessary to make the entire system more customizable, and more capable in providing support for daily activities.

The social robot companion to support homecare nurses: The guardian study protocol.

Introduction: The reduction of the older people's self-sufficiency and the increase in the need for help in daily activities has a significant impact on the person and their caregivers. The primary objective of the GUARDIAN project is to enable the older people to live as long as possible at home, by means of the GUARDIAN socio-technical platform. Methods: and Analysis: The GUARDIAN platform consists of two connected apps: one dedicated to the caregiver (Caregiver App) and one dedicated to the older people (Senior App), plus a robot (Misty II), to provide coaching in an engaging modality. The study is designed as a technical feasibility pilot to test the GUARDIAN system on a group of older people. Discussions: The proposed solution reflects the real wants and needs of the older people person, increasing the acceptability of the system. In addition, the GUARDIAN project has the potential to have distinguished two phases of testing, so that changes can be made to the platform between the first and second phases, using data, both qualitative and quantitative, collected after the first phase. Ethics and dissemination: The study was approved by the Ethic Committee of the IRCCS INRCA. It was recorded in ClinicalTrials.gov on the number NCT05284292.

Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice-The European Union Funded "ME-WE" Project.

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15-17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs' mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs' conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

The awareness, visibility and support for young carers across Europe: a Delphi study.

BACKGROUND: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. METHODS: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. RESULTS: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. CONCLUSIONS: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.

User-Centred Approach to Design an Online Social Support Platform for Seniors : Identification of Users' Types and Their Requirements.

A well-designed social platform has the potential to reduce senior isolation and promote active ageing. However, to design tools that respond to the user need it is important to understand what types of seniors will use it and what are their needs. Through a user-oriented approach at several design stage: focus group, co-creation and usability test we were able to identify the different roles related to the use of the platform, which allowed us to classify them by type, each type having very specific needs. Among the types of users identified, "Active users" are looking for an efficient platform. "Socialiser users" are more passive and mainly interested to participate in activities and are sensitive to trust. "Low skilled users" have limited digital skills and must be accompanied to start with the platform. Finally, "Sporadic users" lack of time to actively use the platform but would use a platform involving a large number of stakeholders. It is important to include all these different types of users in the design phase to ensure the future success of the social platform.

Active Involvement of People with Dementia: A Systematic Review of Studies Developing Supportive Technologies.

Although there are promising benefits of supportive technology in dementia care, use of these technologies is still limited. It is challenging for researchers and developers in this field to actively involve people with dementia in development. This review updates and builds on existing knowledge by including a contemporary and relevant perspective. This perspective was gained by including search words and search databases from the field of Human Computer Interaction (HCI) and Design, as these fields were expected to supply novel insights in the complex task of actively involving people with dementia in developing supportive technologies. A total of 49 out of 3456 studies were included which describe the development of a great variety of technologies. Often people with dementia were involved in the generative or evaluative phase of the development. Interviews and observations were most commonly used methods. In seven articles the people with dementia were co-designers. This literature review reflects that people with dementia can influence the development of technology in regards to content, design, and even the initial idea, although the impact on how they experience their own involvement remains largely unknown. There is a lack of specific knowledge on appropriate methods and materials for active involvement of people with dementia in supportive technology development, even when including articles from the field of HCI and Design. Future research is needed to further appreciate and improve the desired role of people with dementia in meaningful technology development.

Designing an Online Social Support Platform Through Co-Creation with Seniors.

The high number of seniors that feels excluded of society highlights the necessity to promote active ageing. This intention can be supported through online platforms that encourage participation in social activities. The goal of the present study was to identify design principles of online support platforms for seniors through focus groups and to ideate the platform through co-creation sessions. The results show that a social platform for seniors must, among other, help to foster contact between users, and must provide services and meaningful activities. A first mock-up of the platform's design has been created based on the co-creation sessions and will be iteratively evaluated and enhanced in future studies in four countries across Europe. Our findings are in line with those of other studies demonstrating that seniors attach importance to trustworthiness and need to maintain social ties.

What Is the Key for Older People to Show Interest in Playing Digital Learning Games? Initial Qualitative Findings from the LEAGE Project on a Multicultural European Sample.

OBJECTIVE: Learning digital games can influence both older adults' health condition and their capacity to carry on activities in their actual environment. The goal of the current study was to explore and define the user requirements for developing digital learning games for older Europeans, focusing on types of learning games, motivational and social aspects, and preferences on game controllers. SUBJECTS AND METHODS: For this initial stage, a qualitative focus group study was performed in three participating countries (Spain, The Netherlands, and Greece) where both games existing in the market and others developed in other European Commission projects like HERMES were presented to them, both on video presentations and also with the possibility to actually test some of them. RESULTS: Challenge, socialization, fun, providing learning opportunities, and escape from daily routine were extracted as the main keys why older people would be interested in playing digital games. Users described themselves as active and participating in many leisure activities, and this level of activity appeared to be related with the contents proposed for digital games, such as physical activity, culture, arts, and other human sciences (history, geography, traveling, foreign languages, music), and daily life skills (cooking, computer use, first aid). CONCLUSION: The knowledge gathered from the focus groups will be used as input for the design of a learning game that will be largely compatible with the needs and abilities of a wide range of older Europeans.