VIPCare: Understanding the support needed to create affective interactions between new caregivers and residents with dementia

Ghafurian, Moojan; Francis, Linda E.; Tao, Zhuofu; Step, Mary M.; Hoey, Jesse

doi:10.1177/20556683211061998

Cited by 3 publications

(11 citation statements)

References 31 publications

(40 reference statements)

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“…Most papers (26/31, 84%) described more than 1 type of activity. In addition to group activities, many conducted interviews [ 37 , 49 , 51 , 52 , 55 , 56 , 65 , 66 , 81 , 82 ], observations [ 54 , 57 , 62 , 65 , 81 , 82 ], or surveys or questionnaires [ 37 , 54 , 65 , 80 , 82 , 83 ]. A total of 19% (6/31) of the studies set up steering groups that were regularly involved in the research process, described variously as a research development group [ 53 ], living experience expert reference group [ 17 ], steering group [ 51 , 66 , 71 ], and patient advisory board [ 76 , 77 ], although details were minimal or absent about what this entailed.…”

Section: Resultsmentioning

confidence: 99%

“…Considering ways of involving seldom heard groups—from practical adaptations (researchers traveling and not asking patient and public partners to do so) [ 80 ] to cultural considerations [ 79 ]…”

Section: Resultsmentioning

confidence: 99%

“…Considering who owns the environment—researchers going to those involved (eg, integrating into nursing home environment) may help create a greater sense of equality, flatten hierarchies, and support researchers’ understanding of the group they are working with [ 56 , 63 , 80 ]…”

Section: Resultsmentioning

confidence: 99%

“…Staff time pressures—nursing home staff and health care professionals’ strict shift patterns and limited flexibility for time away from work [ 80 ], in some cases exacerbated by the COVID-19 pandemic [ 52 ]…”

Section: Resultsmentioning

confidence: 99%

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

Kirby,

Lai,

Horrocks

et al. 2024

JMIR Aging

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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.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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

Kirby,

Lai,

Horrocks

et al. 2024

JMIR Aging

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“…We codesigned the application with the help of staff from a high quality and well-rated nursing facility in the Cleveland metropolitan area. While the technical design process was reported elsewhere ( Ghafurian et al, 2022 ), here we describe the research findings that informed that process. We report on the support garnered from staff insights and the construction of sentiment profiles for facility residents with ADRD, and show how the final design of VIPCare was grounded in theories of human interaction and affect.…”

Section: Introductionmentioning

confidence: 99%

Preserving the self with artificial intelligence using VIPCare—a virtual interaction program for dementia caregivers

Francis,

Ghafurian

2024

Front. Sociol.

Self Cite

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IntroductionAssistive technology is increasingly used to support the physical needs of differently abled persons but has yet to make inroads on support for cognitive or psychological issues. This gap is an opportunity to address another—the lack of contribution from theoretical social science that can provide insights into problems that cannot be seen. Using Affect Control Theory (ACT), the current project seeks to close that gap with an artificially intelligent application to improve interaction and affect for people with Alzheimer’s Disease and Related Dementias (ADRD). Using sociological theory, it models interactions with persons with ADRD based on self-sentiments, rather than cognitive memory, and informs a cellphone-based assistive tool called VIPCare for supporting caregivers.MethodsStaff focus groups and interviews with family members of persons with ADRD in a long-term residential care facility collected residents’ daily needs and personal histories. Using ACT’s evaluation, potency, and activity dimensions, researchers used these data to formulate a self-sentiment profile for each resident and programmed that profile into the VIPCare application. VIPCare used that profile to simulate affectively intelligent social interactions with each unique resident that reduce deflection from established sentiments and, thus, negative emotions.ResultsWe report on the data collection to design the application, develop self-sentiment profiles for the resident, and generate assistive technology that applies a sociological theory of affect to real world management of interaction, emotion, and mental health.DiscussionBy reducing trial and error in learning to engage people with dementia, this tool has potential to smooth interaction and improve wellbeing for a population vulnerable to distress.

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

Kirby¹,

Lai²,

Horrocks³

et al. 2023

Preprint

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BACKGROUND Technology-related research for people with dementia and their carers often aims to enable people to remain living at home for longer and to prevent unnecessary hospital admissions. To develop research that is person-centred, effective and ethical, patient and public involvement (PPI) is necessary, though may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care related technology, this review explores how, and with what impact, collaborations between researchers and stakeholders such as people with dementia have taken place. OBJECTIVE 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 relating to dementia, technology and patient and public involvement was conducted using Medline, PsycINFO, EMBASE and CINAHL. Papers were screened for inclusion by two authors. Data was then extracted using a pre-designed data extraction table by the same two authors; a third author supported resolution of any conflicts at each stage. Barriers and facilitators of undertaking PPI were then examined and themed. RESULTS Thirty-one papers were included for analysis. The majority (21/31) did not make clear distinctions between activities undertaken as PPI and activities undertaken by research participants, and as such their involvement did not fit easily into the NIHR definition of PPI. Most of this mixed involvement focused on the reviewing or evaluating of technology prototypes. A range of approaches was described, most typically using focus groups or co-design workshops. Nine studies described involvement at multiple stages through the research cycle, sometimes with evidence of sharing of decision-making power. Some studies commented on barriers or facilitators to effective PPI. Challenges identified were often around issues of working with people with significant cognitive impairments, and pressures on time and resources. Most studies did not evaluate the impact of involvement. Where reported, impact 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. 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 the research, patient and public partners and researchers. Wider reporting of methods and facilitative strategies along with more formalised methods for recording and reporting on meaningful impact would be helpful so that all those involved – researchers, patients, and other stakeholders – can learn how together we can best conduct research.

show abstract

VIPCare: Understanding the support needed to create affective interactions between new caregivers and residents with dementia

Cited by 3 publications

References 31 publications

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

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

Preserving the self with artificial intelligence using VIPCare—a virtual interaction program for dementia caregivers

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

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