Involving patients and families in a social robot study

Innovative research in care practice for older people can benefit from the active involvement of patient and family partners. Involvement may begin with identifying priorities, then move to formulate research questions and to plan the research methods, to data collection, and finally to analysis and...

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Autores principales:	Lillian Hung, Annette Berndt, Christine Wallsworth, Neil Horne, Mario Gregorio, Jim Mann, Cindy Liu, Evan Woldum, Andy Au-Yeung, Habib Chaudhury
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2019
Materias:	patient engagement patient experience person-centered care co-research social robot Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/3d6b12cd7b55445989e3339eb019090e
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spelling	oai:doaj.org-article:3d6b12cd7b55445989e3339eb019090e2021-11-15T04:28:44ZInvolving patients and families in a social robot study2372-0247https://doaj.org/article/3d6b12cd7b55445989e3339eb019090e2019-07-01T00:00:00Zhttps://pxjournal.org/journal/vol6/iss2/12https://doaj.org/toc/2372-0247Innovative research in care practice for older people can benefit from the active involvement of patient and family partners. Involvement may begin with identifying priorities, then move to formulate research questions and to plan the research methods, to data collection, and finally to analysis and knowledge dissemination. However, in the field of dementia care, actively engaging patients and families in co-research is a novel practice that needs exploration. This paper describes the experiences and perspectives of two patient researchers and three family researchers, along with four clinicians (two physicians, a nurse, and an occupational therapist) within a social robot project in dementia care. Meeting notes, team reflection focus groups, follow–up interviews, and a research journal were used to document the research process. The results are presented in three themes: (a) identify challenges and lessons learned, (b) co-inquire enriched learning, (c) co-produce knowledge for care improvement. All team members agreed that an inclusive environment was important to facilitate meaningful partnerships for undertaking research together. Trust and respect were seen as vital for a rewarding and productive experience in the co-inquiry journey. Some of the challenges to sustaining participant engagement were competing priorities and a risk of tokenism. This article provides a rich description as well as practical details of the research experiences among team members. We offer examples of lessons learned and practical tips to help others increase the engagement of patients and families in research. <strong>Experience Framework</strong> This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Innovation%20%26%20Technology%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-InnovationTechnology">Access other resources</a> related to this lens</li> </ul>Lillian HungAnnette BerndtChristine WallsworthNeil HorneMario GregorioJim MannCindy LiuEvan WoldumAndy Au-YeungHabib ChaudhuryThe Beryl Institutearticlepatient engagementpatient experienceperson-centered careco-researchsocial robotMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2019)
institution	DOAJ
collection	DOAJ
language	EN
topic	patient engagement patient experience person-centered care co-research social robot Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	patient engagement patient experience person-centered care co-research social robot Medicine (General) R5-920 Public aspects of medicine RA1-1270 Lillian Hung Annette Berndt Christine Wallsworth Neil Horne Mario Gregorio Jim Mann Cindy Liu Evan Woldum Andy Au-Yeung Habib Chaudhury Involving patients and families in a social robot study
description	Innovative research in care practice for older people can benefit from the active involvement of patient and family partners. Involvement may begin with identifying priorities, then move to formulate research questions and to plan the research methods, to data collection, and finally to analysis and knowledge dissemination. However, in the field of dementia care, actively engaging patients and families in co-research is a novel practice that needs exploration. This paper describes the experiences and perspectives of two patient researchers and three family researchers, along with four clinicians (two physicians, a nurse, and an occupational therapist) within a social robot project in dementia care. Meeting notes, team reflection focus groups, follow–up interviews, and a research journal were used to document the research process. The results are presented in three themes: (a) identify challenges and lessons learned, (b) co-inquire enriched learning, (c) co-produce knowledge for care improvement. All team members agreed that an inclusive environment was important to facilitate meaningful partnerships for undertaking research together. Trust and respect were seen as vital for a rewarding and productive experience in the co-inquiry journey. Some of the challenges to sustaining participant engagement were competing priorities and a risk of tokenism. This article provides a rich description as well as practical details of the research experiences among team members. We offer examples of lessons learned and practical tips to help others increase the engagement of patients and families in research. <strong>Experience Framework</strong> This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Innovation%20%26%20Technology%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-InnovationTechnology">Access other resources</a> related to this lens</li> </ul>
format	article
author	Lillian Hung Annette Berndt Christine Wallsworth Neil Horne Mario Gregorio Jim Mann Cindy Liu Evan Woldum Andy Au-Yeung Habib Chaudhury
author_facet	Lillian Hung Annette Berndt Christine Wallsworth Neil Horne Mario Gregorio Jim Mann Cindy Liu Evan Woldum Andy Au-Yeung Habib Chaudhury
author_sort	Lillian Hung
title	Involving patients and families in a social robot study
title_short	Involving patients and families in a social robot study
title_full	Involving patients and families in a social robot study
title_fullStr	Involving patients and families in a social robot study
title_full_unstemmed	Involving patients and families in a social robot study
title_sort	involving patients and families in a social robot study
publisher	The Beryl Institute
publishDate	2019
url	https://doaj.org/article/3d6b12cd7b55445989e3339eb019090e
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Involving patients and families in a social robot study

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