During the pre-design phase of supportive intelligent systems, interviews with future users, such as people with dementia, aim to explore the problems for which technology may present a solution. ...However, interviewing someone with dementia in this unstructured design phase is reported to be challenging resulting in systems that are not truly addressing the needs of the people with dementia. Existing guidelines on creating engaging interviews are often based on post-hoc reflections of researchers and participants. In this study we performed line-to-line sequential in-depth analyses on transcripts of 10 interviews conducted to co-design an interactive intelligent gaming system. Both interviewers and interviewees were subsequently asked to reflect on their experiences. Results show that information exchange with people with dementia can be supported by carefully constructed questions, well-designed probes, and an appropriate length of the interview. To create a pleasant atmosphere during the interviews, researchers should design the interview as a fulfilling experience, be prepared to respond respectfully to negative responses and be able to adapt to different signs of consent. Improving the engagement with people with dementia during interviews can enhance the design and development of intelligent systems that cater to their unique challenges and requirements.
Despite some national examinations of policy responses for young carers (YCs), this study provides a first comprehensive cross-national comparison of the different legislation, policy and service ...frameworks that exist to protect and support adolescent young carers (AYCs) in six European countries (Italy, Netherlands, Slovenia, Sweden, Switzerland and United Kingdom) and how these are enacted. Until now, research has focused on estimating numbers of AYCs and the impact of caring tasks. A preliminary examination of policy responses to YCs was followed by expert interviews. Case study analysis of 25 interviews and a cross-national synthesis were undertaken before incorporating feedback from former YCs. Different responses to YCs were found, ranging from protection and support in policy and legislation and a definition for YCs, to a total lack of recognition and support. Findings highlight the potential to extend existing legislation, policy and service frameworks to include AYCs, and the importance of recognising and raising awareness of YCs. Awareness should be raised at all levels of society for example with professionals in health, social and education sectors and the general public. A definition for YCs is needed, so AYCs can self-identify and AYCs should be recognised as an important target group for policy makers.
Many children under the age of 18 are drawn into unpaid caring roles because they live in families where there is chronic illness, mental health problems or substance misuse, and because other ...alternatives are not available. Many of these children, widely referred to as 'young carers', provides regular and significant amounts of care, often 'hidden' because of the absence of awareness by professionals in the fields of education, health and social care. While there are some positive outcomes for children, published research also shows that children's caring tasks can have negative outcomes, especially during the transition between school and further/higher education and paid work. This paper presents an overview, cross-national and comparative analysis of the different legislation, policy and service frameworks to support young carers in a number of countries. It utilises a qualitative assessment approach and a 7-point classification to understand the state of development and progress since 2017. While the legislation, policy and service frameworks differ significantly among the observed countries, an international and collaborative research network has emerged in the last five years. This plays a vital role as a driver for increasing the awareness of young carers and further national and cross-national policy developments in the future.
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.
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.
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.
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.
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.
Over the years, there has been an increase in the development of assistive technologies. To date, the stages of dementia that these technologies can be best implemented has been underexplored. In ...previous work, researchers developed an infographic providing guidance on when best to introduce assistive technologies for people with dementia, and although this infographic is relevant, it was based solely on the experience of the authors during various national and international projects. However, various studies have been conducted on the use and implementation of technology for people with dementia, providing information on when care technology should be implemented. Therefore, the aim of this paper was to conduct a literature review, and based on the results, to design an infographic showing recommendations on when to implement an assistive technology. The infographic was evaluated during interviews with experts on the implementation of care technology for people with dementia. Our results propose earlier implementation for several technologies, as well as the importance of considering contextual factors such as personal characteristics, background and technical experience when implementing technology. The designed infographic can facilitate the digital transition for healthcare institutions and personnel by offering information into the implementation process of care technology.
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.
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.
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.
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