An Exploration of Experiences of Transdisciplinary Research in Aging and Technology

Transdisciplinary research (TDR) involves academics/scientists collaborating with stakeholders from diverse disciplinary and sectoral backgrounds. While TDR has been recognized as beneficial in generating innovative solutions to complex social problems, knowledge is limited about researchers' perceptions and experiences of TDR in the aging and technology field. We conducted a qualitative study to address this knowledge gap by exploring how members of a pan-Canadian research network on aging and technology perceived and experienced TDR. Thirty members participated in semi-structured interviews. Interview data were analyzed thematically. Participants identified benefits that can be gained from implementing TDR, including mutual learning, improved capacity to understand and solve problems, and community engagement and empowerment. Participants also identified challenges to implementing TDR: communication issues and conflicting priorities among team members; tensions between traditional and TDR approaches; and difficulties identifying partners and developing partnerships. In addition, contradictions between TDR principles and participants' understanding of them became apparent. Nevertheless, some participants described successful strategies for implementing transdisciplinary principles in their projects: stakeholder engagement; language and goal sharing; and open, respectful communication. We offer recommendations to support TDR in aging and technology that focus on education and reform of the culture and values that can constrain efforts to practice TDR.Im Rahmen transdisziplinärer Forschung (TDF) arbeiten Wissenschaftler*innen mit Stakeholdern unterschiedlicher disziplinärer und sektoraler Herkunft zusammen. Während es mittlerweile akzeptiert scheint, dass TDF hilfreich ist, um innovative Lösungen für komplexe soziale Probleme zu generieren, ist das Wissen um Wahrnehmungen und Erfahrungen transdisziplinärer Forscher*innen im Bereich Alter(n) und Technologie vergleichsweise gering. Mittels einer qualitativen Studie mit Mitgliedern eines Pan-Kanadischen Forschungsnetzwerks haben wir versucht, diese Wissenslücke zu schließen. Mit 33 Mitgliedern des Netzwerkes wurden teilstrukturierte Interviews geführt, die thematisch analysiert wurden. Zu den berichteten Benefits von TDF gehörten u.a. wechselseitiges Lernen, verbesserte Möglichkeiten zum Verstehen und Lösen von Problemen  sowie Zugehörigkeit zu und Einbettung in die jeweilige Community. Erlebte Herausforderungen betrafen insbesondere kommunikative Schwierigkeiten und Prioritätskonflikte im Team, Spannungen zwischen Vertreter*innen von traditionellen vs. TDF-Ansätzen sowie Hindernisse beim Identifizieren von potenziellen Partner*innen. Zusätzliche waren Widersprüche zwischen TDF-Prinzipien und deren Verständnis durch die Interviewten offensichtlich. Einige der Gesprächspartner*innen haben gleichwohl Strategien beschrieben, die auf eine erfolgreiche Implementierung transdisziplinärer Prinzipien verweisen, nämlich das Engagement von Stakeholdern, das Teilen von Zielen und Sprachen sowie eine offene, respektvolle Kommunikation. Hiervon ausgehend bieten wir Empfehlungen für TDF zu Alter(n) und Technologie mit einem Fokus auf Bildung und auf eine Reform von Kulturen und Werten, die in der Praxis Bemühungen um TDF entgegenstehen

End-­‐of-­‐life care beliefs values, practices and support needs of Chinese women living in the UK: A Cultural Safety approach

End-of-life care requires attention to mental health, religious practices and beliefs, and health care systems and supports to help individuals cope with the process of aging, coming to terms with death and dying and to help family members and loved ones cope with bereavement. To date, there is limited research examining end of life care and the needs of Chinese people in the UK. Understanding end-of-life care expectations in relation to this population is important for informing the development of new health policy and service initiatives, given that there are currently over 1 million Chinese people living in the UK. The purpose of this study is to explore the mental health, religious practices and beliefs, and services and support systems required by this community to cope with end-of-life and bereavement. In July 2011, Wai Yin Chinese Women’s Society in Manchester, UK conducted fourteen semi-structured in-depth interviews with a group of Chinese migrants (primarily women working within the margins of UK’s formal economy) to explore end-of-life care issues. The current study performed a secondary analysis of these transcripts focusing only on the stories of the eleven Chinese women. The women participants were recruited as a part of Wai Yin’s Sunshine Project, which aimed to assist Chinese migrants in improving their knowledge and understandings of their employment and immigration rights (in the UK) and to help them learn the English language. Main findings are presented in eleven broad-based themes: acculturation, culturally specific services, death and dying, Eastern practices and beliefs, gendered effects, health and health care, hereafter, language and communication, obligations versus duties and responsibilities, personal choices, and Western practices and beliefs

Community-based participatory research for ageing in the right place : developments in concepts, theory, methods, and practice to address housing inequality for older adults

This thesis by publication critiques existing ageing-in-place concepts and discusses the need for a community-led, participatory approach to create effective housing solutions for older adults. It is argued that current understandings of ageing-in-place may perpetuate housing inequality through the dominant view that all older adults can live happily at home for as long as possible. Existing housing strategies developed in pursuance of ageing-in-place are limited by a lack of important theoretical and methodological insight necessary for acquiring in-depth holistic understandings of the place-based needs of older adults towards ageing well in the right place. To fully understand the experience of older adults’ everyday lives as they age-in-place necessitates a collaborative research approach. Such an approach facilitates the active participation of the community and individuals directly impacted by the housing redevelopment process. This thesis introduces and discusses complexities that surround the housing development process for older adults. It consists of five published papers interlinked by an affordable housing redevelopment project in western Canada. These papers focused on: (1) a necessary progression towards ageing in the right place concepts; (2) the importance of collaborative, narrative and creative methods for developing age-friendly housing; (3) theoretical development of an intersectional place perspective; and, (4) the value of knowledge translation mechanisms to create a pathway towards real world impact. The papers present conceptual, theoretical, and methodological developments and contributions that are guided by a critical, community-based participatory research approach. They discuss the value of a community-based participatory research (CBPR) approach for the co-creation of effective place-based housing solutions for older adults. The application of CBPR principles helped shape the selection and implementation of methods as well as informed a new theoretical perspective that bridges place theories in Gerontology together with intersectional feminism

Implementing Advance Care Planning in Palliative and End of Life Care:A Scoping Review of Community Nursing Perspectives

Background: Advance Care Planning (ACP) is a priority within palliative care service provision. Nurses working in the community occupy an opportune role to engage with families and patients in ACP. Carers and family members of palliative patients often find ACP discussions difficult to initiate. However, community nurses caring for palliative patients can encourage these discussions, utilising the rapport and relationships they have already built with patients and families. Despite this potential, implementation barriers and facilitators continue to exist. To date, no research synthesis has captured the challenges community nurses face when implementing ACP, nor the facilitators of community nurse-led ACP. Considering this, the review question of: 'What factors contribute to or hinder ACP discussion for nurses when providing care to palliative patients?’ was explored.Method: To capture challenges and facilitators, a global qualitative scoping review was undertaken in June 2023. The Arksey and O’Malley framework for scoping reviews guided the review methodology. Six databases were searched identifying 333 records: CINAHL (16), MEDLINE (45), PUBMED (195), EMBASE (30), BJOCN (15), IJOPN (32). After de-duplication and title and abstract screening, 108 records remained. These were downloaded, hand searched (adding 5 articles) and subject to a full read. 98 were rejected, leaving a selected dataset of 15 articles. Data extracted into a data extraction chart were thematically analysed.Results: Three key themes were generated: ‘Barriers to ACP’, ‘Facilitators of ACP’ and ‘Understanding of professional role and duty’. Key barriers were – lack of confidence, competence, role ambiguity and prognostic uncertainty. Key facilitators concerned the pertinence of the patient-practitioner relationship enabling ACP amongst nurses who had both competence and experience in ACP and/or palliative care (e.g., palliative care training). Lastly, nurses understood ACP to be part of their role, however, met challenges understanding the law surrounding this and its application processes.Conclusions: This review suggests that community nurses' experience and competence are associated with the effective implementation of ACP with palliative patients. Future research is needed to develop interventions to promote ACP uptake in community settings, enable confidence building for community nurses and support higher standards of palliative care via the implementation of ACP

Implementing Advance Care Planning in Palliative and End of Life Care:A Scoping Review of Community Nursing Perspectives

Background: Advance Care Planning (ACP) is a priority within palliative care service provision. Nurses working in the community occupy an opportune role to engage with families and patients in ACP. Carers and family members of palliative patients often find ACP discussions difficult to initiate. However, community nurses caring for palliative patients can encourage these discussions, utilising the rapport and relationships they have already built with patients and families. Despite this potential, implementation barriers and facilitators continue to exist. To date, no research synthesis has captured the challenges community nurses face when implementing ACP, nor the facilitators of community nurse-led ACP. Considering this, the review question of: 'What factors contribute to or hinder ACP discussion for nurses when providing care to palliative patients?’ was explored.Method: To capture challenges and facilitators, a global qualitative scoping review was undertaken in June 2023. The Arksey and O’Malley framework for scoping reviews guided the review methodology. Six databases were searched identifying 333 records: CINAHL (16), MEDLINE (45), PUBMED (195), EMBASE (30), BJOCN (15), IJOPN (32). After de-duplication and title and abstract screening, 108 records remained. These were downloaded, hand searched (adding 5 articles) and subject to a full read. 98 were rejected, leaving a selected dataset of 15 articles. Data extracted into a data extraction chart were thematically analysed.Results: Three key themes were generated: ‘Barriers to ACP’, ‘Facilitators of ACP’ and ‘Understanding of professional role and duty’. Key barriers were – lack of confidence, competence, role ambiguity and prognostic uncertainty. Key facilitators concerned the pertinence of the patient-practitioner relationship enabling ACP amongst nurses who had both competence and experience in ACP and/or palliative care (e.g., palliative care training). Lastly, nurses understood ACP to be part of their role, however, met challenges understanding the law surrounding this and its application processes.Conclusions: This review suggests that community nurses' experience and competence are associated with the effective implementation of ACP with palliative patients. Future research is needed to develop interventions to promote ACP uptake in community settings, enable confidence building for community nurses and support higher standards of palliative care via the implementation of ACP

The Impact of Advance Care Planning on Quality of Life, Quality of Care and Quality of Death for Asian older People in Palliative and End-of-Life Care:A Scoping Review

Introduction: The ageing population has increased substantially across countries in Asia. With increasing age, a key challenge among older people is deteriorating physical health associated with chronic diseases that contribute to morbidity and mortality. Hence, an increase in demand for long-term care alongside a need for palliative care (PC) is inevitable. Advance care planning (ACP) has been shown to enhance the quality of life (QoL), quality of care (QoC), and quality of death (QoD) for those nearing the end of life (EoL) by enabling individuals to input their preferences for future care. However, the impact of ACP on QoL, QoC, and QoD remains understudied across Asian populations.Aim: This scoping review aims to explore the relationship between ACP and QoL, QoC, and QoD in palliative and end of life care (PEoLC) amongst older Asian people.Methodology: This scoping review was informed by both Arksey and O'Malley’s methodological approach and the JBI Manual for Evidence Synthesis.Results: A decade search of nine electronic databases yielded 1946 records with 21 studies included in the final subset, and through reflexive thematic analysis, we identified four themes and two sub-themes: patient autonomy, inadequate ACP preparation, perception of PEoLC, and factors influencing ACP engagement, with internal and external factors as sub-themes.Conclusion: This scoping review highlighted that most research has focused on the role of patient autonomy in EoL decision-making, suggesting that patient autonomy is a fundamental principle in ACP as patients are encouraged to consider and communicate their life goals, values, and preferences for medical treatment and EoL care, which allows them to make decisions that are aligned with their personal beliefs and wishes. Several studies have explored the barriers influencing EoL decisions and ACP engagement including family members, cultural beliefs, individual perceptions towards PEoLC, personal experiences, and healthcare providers. However, little consideration was given to how ACP affects QoL, QoC, and QoD in Asian older people from their own perspectives