Toward Common Data Elements for International Research in Long-term Care Homes: Advancing Person-Centered Care

Abstract

on behalf of the WE-THRIVE Group Authorship Statement: The following are members of WE-THRIVE (Worldwide Elements to Harmonize Research in Long Term Care Living Environments): [To insert all participants in domain discussions and IAGG-GSA session who wish to be included; we are following the ICMJE guidelines for consortium authorship, as operationalized by BMJ Special articles do not involve original research but instead provide novel interpretation or synthesis of information in 1 an area of general interest to readers of the journal. Examples of special articles include consensus statements, 2 clinical tools, practice guidelines, and discussion of new policies or regulations. Manuscripts may be solicited by the 3 editors or submitted at the initiative of authors. The body of the submission (excluding abstract and references) 4should generally be limited to 3,000 words; it can include 3 tables or figures, and 50 references. An unstructured 5 abstract of up to 300 words is required, and specific headings to organize the text are not prescribed; however, the 6 text should conclude with a section entitled "Implications for Practice, Policy, and/or Research." 7 8 ABSTRACT 9To support person-centered, residential long-term care internationally, a consortium of 10 researchers in medicine, nursing, behavioral and social sciences from 21 geographically and 11 economically diverse countries have launched the WE-THRIVE initiative to develop a common 12 data infrastructure. The consortium aims to identify measurement domains that are 13 internationally relevant, including in low and middle income countries, prioritize concepts to 14 operationalize domains, and specify a set of data elements to measure concepts that can be used (CDEs) initiative. Four domains were identified, including organizational context; workforce and 21 staffing; person-centered care; and care outcomes. Using a nominal group process, WE-22 103 who facilitated domain-specific discussions. Domain-specific discussions focused on potential 104 concepts in each domain that were common to LTC settings across represented countries. The 105 domain committee chairs met in monthly WE-THRIVE steering committee meetings to report 106 updates and share challenges and ideas across subgroups. Figure 1 summarizes the 107 developmental timeline of WE-THRIVE's work, totaling 8 steering committee meetings and 9 108 domain committee meetings that occurred in preparation for IAGG 2017. 109Because of the group's commitment to global inclusiveness, a standing item for the 110 steering committee and the domain committee meetings was to identify new WE-THRIVE 111 members, especially those from low and middle-income countries (LMICs), to vet the work to 112 date. We built an inclusive, flexible network of researchers with ongoing participation through 113 face-to-face or distance-based technology that was not limited to researchers who could attend 114 IAGG 2017. This approach is consistent with the ESSENCE on Health Research initiative's 115 principle of building collaborativ...

Advancing Long-Term Care Science Through Using Common Data Elements: Candidate Measures for Care Outcomes of Personhood, Well-Being, and Quality of Life

“…The five final concepts were endorsed by the full plenary. These five concepts include symptom management , especially pain management; functional level; harm-free care , which was discussed as the absence of several avoidable, adverse outcomes, such as falls; well-being , which was discussed as comprised of two interrelated concepts of well-being and QoL ; and personhood , described as, “letting people be people”; methodological details have been described elsewhere (Corazzini et al, 2019). This article focuses on the well-being, QoL , and personhood concepts as they are conceptually different from symptom management, functional level, and harm-free care in being positively focused and showing less agreement about measurement conventions.…”

The Feasibility of Connecting Conversations: A Narrative Method to Assess Experienced Quality of Care in Nursing Homes from the Resident’s Perspective

“…Therefore, to assess experienced quality of care, it is important to ask not only residents, but also family and caregivers how the resident experiences the quality of care, by performing separate conversations [46]. Additionally, the resident's full customer journey should be considered during quality assessments, as stories, experiences and preferences between residents differ [12,28].…”

“…This concept is known as balanced centricity in service sciences, implying that experiences are created by multiple stakeholders whose needs deserve to be acknowledged [ 24 ]. Residents, family and caregivers each have their own experiences and needs and by including all involved stakeholders when assessing quality of care, quality improvement initiatives can focus more on what matters most from a holistic perspective [ 25 , 26 , 27 , 28 ]. Additionally, this contributes to a resident’s quality of life and well-being, families feeling valued by making a useful contribution and caregivers’ job satisfaction [ 29 , 30 ].…”

Person-Centered Dementia Care in China: A Bilingual Literature Review

“…Our team is transnational and bilingual and emerged from the WE-THRIVE collaborative, which engaged LTC researchers in China, United States, and numerous other countries in collaborative international LTC research (Corazzini et al, 2019). We conducted a bilingual, English and Chinese, literature review on person-centered dementia care in China.…”