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

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.

Assessing a Sleep Interviewing Chatbot to Improve Subjective and Objective Sleep: Protocol for an Observational Feasibility Study.

BACKGROUND: Sleep disorders are common among the aging population and people with neurodegenerative diseases. Sleep disorders have a strong bidirectional relationship with neurodegenerative diseases, where they accelerate and worsen one another. Although one-to-one individual cognitive behavioral interventions (conducted in-person or on the internet) have shown promise for significant improvements in sleep efficiency among adults, many may experience difficulties accessing interventions with sleep specialists, psychiatrists, or psychologists. Therefore, delivering sleep intervention through an automated chatbot platform may be an effective strategy to increase the accessibility and reach of sleep disorder intervention among the aging population and people with neurodegenerative diseases. OBJECTIVE: This work aims to (1) determine the feasibility and usability of an automated chatbot (named MotivSleep) that conducts sleep interviews to encourage the aging population to report behaviors that may affect their sleep, followed by providing personalized recommendations for better sleep based on participants' self-reported behaviors; (2) assess the self-reported sleep assessment changes before, during, and after using our automated sleep disturbance intervention chatbot; (3) assess the changes in objective sleep assessment recorded by a sleep tracking device before, during, and after using the automated chatbot MotivSleep. METHODS: We will recruit 30 older adult participants from West London for this pilot study. Each participant will have a sleep analyzer installed under their mattress. This contactless sleep monitoring device passively records movements, heart rate, and breathing rate while participants are in bed. In addition, each participant will use our proposed chatbot MotivSleep, accessible on WhatsApp, to describe their sleep and behaviors related to their sleep and receive personalized recommendations for better sleep tailored to their specific reasons for disrupted sleep. We will analyze questionnaire responses before and after the study to assess their perception of our proposed chatbot; questionnaire responses before, during, and after the study to assess their subjective sleep quality changes; and sleep parameters recorded by the sleep analyzer throughout the study to assess their objective sleep quality changes. RESULTS: Recruitment will begin in May 2023 through UK Dementia Research Institute Care Research and Technology Centre organized community outreach. Data collection will run from May 2023 until December 2023. We hypothesize that participants will perceive our proposed chatbot as intelligent and trustworthy; we also hypothesize that our proposed chatbot can help improve participants' subjective and objective sleep assessment throughout the study. CONCLUSIONS: The MotivSleep automated chatbot has the potential to provide additional care to older adults who wish to improve their sleep in more accessible and less costly ways than conventional face-to-face therapy. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/45752.

Reflections on contributing to health research: A qualitative interview study with research participants and patient advisors.

OBJECTIVES: The aims of this study were to explore individuals' experiences of contributing to health research and to identify the types of impact that are perceived as important by participants or patient and public advisors. Specifically, research led by NMAHPP clinicians (Nursing, Midwifery, Allied health professions, Healthcare science, Psychology and Pharmacy). METHODS: Semi-structured one-to-one interviews were conducted with health research participants and patient or public advisors. Interviewees were recruited from five UK sites and via social media. Interview transcripts were analysed using Thematic Analysis to identify key themes and areas of disagreement. RESULTS: Twenty-one interviews were completed, and four main themes were identified. The first, optimising research experiences, included personal reflections and broader recommendations to improve participant experiences. The second, connecting health research with healthcare, described research as key for the continued development of healthcare, but illustrated that communication between research teams, participants, and clinicians could be improved. The third theme explored the personal impacts of contributing to research, with interviewees recalling common positive experiences. The final theme discussed capturing research impacts. Interviewees highlighted potential priorities for different stakeholders, but emphasised that financial impacts should not be the sole factor. CONCLUSION: Individuals who were involved in NMAHPP health research recalled positive experiences and reported good relationships with their research teams. They felt that their contributions were valued. Suggested strategies to optimise the research experience focused on simplifying documentation, clear signposting of the research activities involved, and feedback on the research findings. Routine sharing of relevant research data with clinicians was also recommended. Personal impacts included a deeper understanding of their health condition or health more broadly, and increased confidence interacting with healthcare and other professionals. These findings will be used to inform development of a framework to capture the impact of NMAHPP research.