The patients’ and caregivers’ perspective: In-hospital navigation aids for people with dementia- a qualitative study with a value sensitive design approach

Kowe, Antonia; Köhler, Stefanie; Görß, Doreen; Teipel, Stefan J.

doi:10.1080/10400435.2021.2020378

Cited by 8 publications

(3 citation statements)

References 52 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…In many cases, this reporting was minimal, for example, listing one challenge the team faced. Only 26% (8/31) of the papers had what we considered to be a more thorough discussion of barriers or facilitators [ 51 , 56 , 60 , 63 , 64 , 69 , 70 , 73 , 74 , 78 ] (the papers by Hendriks et al [ 63 , 64 ] refer to the same study, as do those by Kowe et al [ 69 , 70 ]). Barriers and facilitators were grouped into themes ( Textboxes 4 and 5 ).…”

Section: Resultsmentioning

confidence: 99%

Patient and Public Involvement in Technology-Related Dementia Research: Scoping Review

Kirby,

Lai,

Horrocks

et al. 2024

JMIR Aging

View full text Add to dashboard Cite

Background Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care–related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place. Objective This review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area. Methods A scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed. Results The search yielded 1694 papers, with 31 (1.83%) being analyzed after screening. Most (21/31, 68%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13%) papers used formal methods for evaluating impact. Conclusions Researchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved—researchers, patients, and other stakeholders—can learn how we can best conduct research together.

show abstract

Section: Resultsmentioning

confidence: 99%

Patient and Public Involvement in Technology-Related Dementia Research: Scoping Review

Kirby,

Lai,

Horrocks

et al. 2024

JMIR Aging

View full text Add to dashboard Cite

show abstract

“…Several types of dementia, including Alzheimer's disease and dementia with Lewy bodies, can affect visual cognition and navigational abilities to varying extents (Plácido et al, 2022 ). Spatial navigation aids for people with dementia in forms of digital apps and devices have been explored for years (Kowe et al, 2023 ; Pillette et al, 2023 ). Navigation aid can be useful both for outdoor navigation, e.g., finding your way from the home to a destination, and indoor navigation, e.g., finding the way around a hospital or other large building (García-Requejo et al, 2023 ).…”

Section: Methodsmentioning

confidence: 99%

Introduction to Large Language Models (LLMs) for dementia care and research

Treder,

Lee,

Tsvetanov

2024

Front. Dement.

View full text Add to dashboard Cite

IntroductionDementia is a progressive neurodegenerative disorder that affects cognitive abilities including memory, reasoning, and communication skills, leading to gradual decline in daily activities and social engagement. In light of the recent advent of Large Language Models (LLMs) such as ChatGPT, this paper aims to thoroughly analyse their potential applications and usefulness in dementia care and research.MethodTo this end, we offer an introduction into LLMs, outlining the key features, capabilities, limitations, potential risks, and practical considerations for deployment as easy-to-use software (e.g., smartphone apps). We then explore various domains related to dementia, identifying opportunities for LLMs to enhance understanding, diagnostics, and treatment, with a broader emphasis on improving patient care. For each domain, the specific contributions of LLMs are examined, such as their ability to engage users in meaningful conversations, deliver personalized support, and offer cognitive enrichment. Potential benefits encompass improved social interaction, enhanced cognitive functioning, increased emotional well-being, and reduced caregiver burden. The deployment of LLMs in caregiving frameworks also raises a number of concerns and considerations. These include privacy and safety concerns, the need for empirical validation, user-centered design, adaptation to the user's unique needs, and the integration of multimodal inputs to create more immersive and personalized experiences. Additionally, ethical guidelines and privacy protocols must be established to ensure responsible and ethical deployment of LLMs.ResultsWe report the results on a questionnaire filled in by people with dementia (PwD) and their supporters wherein we surveyed the usefulness of different application scenarios of LLMs as well as the features that LLM-powered apps should have. Both PwD and supporters were largely positive regarding the prospect of LLMs in care, although concerns were raised regarding bias, data privacy and transparency.DiscussionOverall, this review corroborates the promising utilization of LLMs to positively impact dementia care by boosting cognitive abilities, enriching social interaction, and supporting caregivers. The findings underscore the importance of further research and development in this field to fully harness the benefits of LLMs and maximize their potential for improving the lives of individuals living with dementia.

show abstract

“…For example, in the case of social robots in primary education, current literature is generally focused on specific stakeholder groups, such as the perspectives of teachers (Serholt et al, 2017) or children . Also in other (non-HRI) fields, addressing the moral implications of technologies are often done by focusing on specific stakeholders, such as caregivers and patients (Kowe et al, 2021), teachers (P. Lin & Van Brummelen, 2021) or patients and designers (Nouwen & Zaman, 2018). However, the results presented in Chapter 4 indicated that being part of a specific stakeholder group has a limited effect on the probability of belonging to a specific attitude profile.…”

Section: Distinct Attitude Profiles Related To the Moral Considerationsmentioning

confidence: 99%

Robots in education

Smakman

View full text Add to dashboard Cite

The challenges facing primary education are significant: a growing teacher shortage, relatively high administrative burdens that contribute to work-related stress and an increasing diversity of children in the classroom. A promising new technology that can help teachers and children meet these challenges is the social robot. These physical robots often use artificial intelligence and can communicate with children by taking on social roles, such as that of a fellow classmate or teaching assistant. Previous research shows that the use of social robots can lead to better results in several ways than when traditional educational technologies are applied. However, social robots not only bring opportunities but also lead to new ethical questions. In my PhD research, I investigated the moral considerations of different stakeholders, such as parents and teachers, to create the first guideline for the responsible design and use of social robots for primary education. Various research methods were used for this study. First of all, a large, international literature study was carried out on the advantages and disadvantages of social robots, in which 256 studies were ultimately analysed. Focus group sessions were then held with stakeholders: a total of 118 parents of primary school children, representatives of the robotics industry, educational policymakers, government education advisors, teachers and primary school children contributed. Based on the insights from the literature review and the focus group sessions, a questionnaire was drawn up and distributed to all stakeholders. Based on 515 responses, we then classified stakeholder moral considerations. In the last study, based on in-depth interviews with teachers who used robots in their daily teaching and who supervised the child-robot interaction of >2500 unique children, we studied the influence of social robots on children's social-emotional development. Our research shows that social robots can have advantages and disadvantages for primary education. The diversity of disadvantages makes the responsible implementation of robots complex. However, overall, despite their concerns, all stakeholder groups viewed social robots as a potentially valuable tool. Many stakeholders are concerned about the possible negative effect of robots on children's social-emotional development. Our research shows that social robots currently do not seem to harm children's social-emotional development when used responsibly. However, some children seem to be more sensitive to excessive attachment to robots. Our research also shows that how people think about robots is influenced by several factors. For example, low-income stakeholders have a more sceptical attitude towards social robots in education. Other factors, such as age and level of education, were also strong predictors of the moral considerations of stakeholders. This research has resulted in a guideline for the responsible use of social robots as teaching assistants, which can be used by primary schools and robot builders. The guideline provides schools with tools, such as involving parents in advance and using robots to encourage human contact. School administrators are also given insight into possible reactions from parents and other parties involved. The guideline also offers guidelines for safeguarding privacy, such as data minimization and improving the technical infrastructure of schools and robots; which still often leaves much to be desired. In short, the findings from this thesis provide a solid stepping stone for schools, robot designers, programmers and engineers to develop and use social robots in education in a morally responsible manner. This research has thus paved the way for more research into robots as assistive technology in primary education.

show abstract

The patients’ and caregivers’ perspective: In-hospital navigation aids for people with dementia- a qualitative study with a value sensitive design approach

Cited by 8 publications

References 52 publications

Patient and Public Involvement in Technology-Related Dementia Research: Scoping Review

Patient and Public Involvement in Technology-Related Dementia Research: Scoping Review

Introduction to Large Language Models (LLMs) for dementia care and research

Robots in education

Contact Info

Product

Resources

About