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Go&Grow: An Evaluation of a Pervasive Social Exergame for Caregivers of Loved Ones with Dementia.

ABSTRACT: Caregivers of persons with dementia (PWD) experience higher rates of stress, social isolation, and poor mental and physical health compared to non-caregiving populations. There is a vital need for engaging, sustainable, and scalable resources to support social, physical, and emotional wellbeing amongst caregivers of PWD. To explore this open design space, we designed and conducted a 6-week mixed-method evaluation of Go&Grow, a pervasive social exergame in which flowers grow as users increase physical activity and interact with other caregivers of PWD. Our findings showed that using Go&Grow helped participants relieve stress, increase physical activity, and develop empathy for and patience towards the loved one with dementia that they cared for. At the same time, tension arose as some caregivers desired to learn about the life challenges that Go&Grow users faced, while others hesitated to share such content. We discuss our findings and recommendations for future technology that promotes caregivers' time for themselves, understanding of PWD, and connections with other caregivers.

SUBMITTER: Lin XY

PROVIDER: S-EPMC7605491 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Go&Grow: An Evaluation of a Pervasive Social Exergame for Caregivers of Loved Ones with Dementia.

Lin Xin Yao XY Saksono Herman H Stowell Elizabeth E Lachman Margie E ME Castaneda-Sceppa Carmen C Parker Andrea G AG

Proceedings of the ACM on human-computer interaction 20201001 CSCW 2

Caregivers of persons with dementia (PWD) experience higher rates of stress, social isolation, and poor mental and physical health compared to non-caregiving populations. There is a vital need for engaging, sustainable, and scalable resources to support social, physical, and emotional wellbeing amongst caregivers of PWD. To explore this open design space, we designed and conducted a 6-week mixed-method evaluation of Go&Grow, a pervasive social exergame in which flowers grow as users increase phy ...[more]

PMID: 33150303

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Project description:IntroductionAsian American caregivers supporting loved ones with dementia experience greater burden and more stress than other racial/ethnic groups, warranting the need for more culturally and linguistically appropriate formal support, such as in nursing homes. Transitioning loved ones into nursing homes with dementia care units is a complex process that can be impacted by a multitude of factors. Employing several established frameworks, including the socioecological model, this qualitative study will focus on the largest Asian American subgroup (people of Chinese descent) and explore the experience of family caregivers as they support the transition of their loved ones with dementia into nursing homes in the USA. Our focus will be on the nuanced influences of the Chinese language and culture and COVID-19-related social isolation and racial discrimination.Methods and analysisRecruitment will take place starting in January 2024. Current or former Chinese caregivers for Chinese loved ones with dementia, able to communicate in Mandarin Chinese or English, and currently residing in the USA will be eligible. Key informants with intimate understanding and experience with this population will also be included. Data will be collected through 2024 using semistructured, in-depth interviews with each participant. Depending on participants' preferences, interviews will be conducted in either Mandarin Chinese or English and either in person, via Zoom or by phone. Interviews will be transcribed verbatim. Iterative thematic analysis will be employed. A coding structure will be developed based on interview questions and themes and patterns that are revealed through data immersion. Transcripts, prepared in their original language, will be dual-coded by bilingual researchers using NVivo 14. Consensus summaries of themes will be prepared. Relevant direct quotes for each thematic area will be identified (those in Chinese will be translated into English) and cited in reports and manuscripts.Ethics and disseminationThe study is approved by the UMass Chan Medical School Institutional Review Board (ID: STUDY00001376). Findings will be published in peer-review journals following the consolidated criteria for reporting qualitative research.

Project description:BackgroundHospitals are institutions whose primary task is to treat patients. Family-centered care, which considers loved ones as equal partners in patient care, has been gaining recognition in the adult care setting. Our aim was to record experiences of and opinions on communication between hospital-based healthcare providers and patients' loved ones, related but not limited to the rigorous mitigation measures implemented during the COVID-19 pandemic.MethodsThe Twitter profile @HospitalsTalkTo and hashtag #HospitalsTalkToLovedOnes were created to interact with the Twitter public between 7 June 2021 and 7 February 2022. Conversations surrounding #HospitalsTalkToLovedOnes were extracted and subjected to natural language processing analysis using term frequency and Markov chain analysis. Qualitative thematic analysis was performed on the 10% most interacted tweets and of tweets mentioning "COVID" from a personal experience-based subset.ResultsWe collected 4412 unique tweets made or interacted by 7040 Twitter users from 142 different countries. The most frequent words were patient, hospital, care, family, loved and communication. Thematic analysis revealed the importance of communication between patients, patients' loved ones and hospitals; showed that patients and their loved ones need support during a patient's hospital journey; and that pediatric care should be the gold standard for adult care. Visitation restrictions due to COVID-19 are just one barrier to communication, others are a lack of phone signal, no space or time for asking questions, and a complex medical system. We formulate 3 recommendations to improve the inclusion of loved ones into the patient's hospital stay.Conclusions"Loved ones are not 'visitors' in a patient's life". Irrespective of COVID-19, patient's loved ones need to be included during the patient's hospital journey. Transparent communication and patient empowerment increase patient safety and improve the hospital experience for both the patients and their loved ones. Our findings underline the need for the concept of family-centered care to finally be implemented in adult nursing clinical practice.

Dataset Information

Go&Grow: An Evaluation of a Pervasive Social Exergame for Caregivers of Loved Ones with Dementia.

Publications

Go&Grow: An Evaluation of a Pervasive Social Exergame for Caregivers of Loved Ones with Dementia.

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