Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study.

BACKGROUND: The COVID-19 pandemic forced the spread of digital health tools to address limited clinical resources for chronic health management. It also illuminated a population of older patients requiring an informal caregiver (IC) to access this care due to accessibility, technological literacy, or English proficiency concerns. For patients with heart failure (HF), this rapid transition exacerbated the demand on ICs and pushed Canadians toward a dyadic care model where patients and ICs comanage care. Our previous work identified an opportunity to improve this dyadic HF experience through a shared model of dyadic digital health. We call this alternative model of care "Caretown for Medly," which empowers ICs to concurrently expand patients' self-care abilities while acknowledging ICs' eagerness to provide greater support. OBJECTIVE: We present the systematic design and development of the Caretown for Medly dyadic management module. While HF is the outlined use case, we outline our design methodology and report on 6 core disease-invariant features applied to dyadic shared care for HF management. This work lays the foundation for future usability assessments of Caretown for Medly. METHODS: We conducted a qualitative, human-centered design study based on 25 semistructured interviews with self-identified ICs of loved ones living with HF. Interviews underwent thematic content analysis by 2 coders independently for themes derived deductively (eg, based on the interview guide) and inductively refined. To build the Caretown for Medly model, we (1) leveraged the Knowledge to Action (KTA) framework to translate knowledge into action and (2) borrowed Google Sprint's ability to quickly "solve big problems and test new ideas," which has been effective in the medical and digital health spaces. Specifically, we blended these 2 concepts into a new framework called the "KTA Sprint." RESULTS: We identified 6 core disease-invariant features to support ICs in care dyads to provide more effective care while capitalizing on dyadic care's synergistic benefits. Features were designed for customizability to suit the patient's condition, informed by stakeholder analysis, corroborated with literature, and vetted through user needs assessments. These features include (1) live reports to enhance data sharing and facilitate appropriate IC support, (2) care cards to enhance guidance on the caregiving role, (3) direct messaging to dissolve the disconnect across the circle of care, (4) medication wallet to improve guidance on managing complex medication regimens, (5) medical events timeline to improve and consolidate management and organization, and (6) caregiver resources to provide disease-specific education and support their self-care. CONCLUSIONS: These disease-invariant features were designed to address ICs' needs in supporting their care partner. We anticipate that the implementation of these features will empower a shared model of care for chronic disease management through digital health and will improve outcomes for care dyads.

Understanding Whether and How a Digital Health Intervention Improves Transition Care for Emerging Adults Living With Type 1 Diabetes: Protocol for a Mixed Methods Realist Evaluation.

BACKGROUND: Emerging adults living with type 1 diabetes (T1D) face a series of challenges with self-management and decreased health system engagement, leading to an increased risk of acute complications and hospital admissions. Effective and scalable strategies are needed to support this population to transfer seamlessly from pediatric to adult care with sufficient self-management capability. While digital health interventions for T1D self-management are a promising strategy, it remains unclear which elements work, how, and for which groups of individuals. OBJECTIVE: This study aims to evaluate the design and implementation of a multicomponent SMS text message-based digital health intervention to support emerging adults living with T1D in real-world settings. The objectives are to identify the intervention components and associated mechanisms that support user engagement and T1D health care transition experiences and determine the individual characteristics that influence the implementation process. METHODS: We used a realist evaluation embedded alongside a randomized controlled trial, which uses a sequential mixed methods design to analyze data from multiple sources, including intervention usage data, patient-reported outcomes, and realist interviews. In step 1, we conducted a document analysis to develop a program theory that outlines the hypothesized relationships among "individual-level contextual factors, intervention components and features, mechanisms, and outcomes," with special attention paid to user engagement. Among them, intervention components and features depict 10 core characteristics such as transition support information, problem-solving information, and real-time interactivity. The proximal outcomes of interest include user engagement, self-efficacy, and negative emotions, whereas the distal outcomes of interest include transition readiness, self-blood glucose monitoring behaviors, and blood glucose. In step 2, we plan to conduct semistructured realist interviews with the randomized controlled trial's intervention-arm participants to test the hypothesized "context-intervention-mechanism-outcome" configurations. In step 3, we plan to triangulate all sources of data using a coincidence analysis to identify the necessary combinations of factors that determine whether and how the desired outcomes are achieved and use these insights to consolidate the program theory. RESULTS: For step 1 analysis, we have developed the initial program theory and the corresponding data collection plan. For step 2 analysis, participant enrollment for the randomized controlled trial started in January 2023. Participant enrollment for this realist evaluation was anticipated to start in July 2023 and continue until we reached thematic saturation or achieved informational power. CONCLUSIONS: Beyond contributing to knowledge on the multiple pathways that lead to successful engagement with a digital health intervention as well as target outcomes in T1D care transitions, embedding the realist evaluation alongside the trial may inform real-time intervention refinement to improve user engagement and transition experiences. The knowledge gained from this study may inform the design, implementation, and evaluation of future digital health interventions that aim to improve transition experiences. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46115.

The Value of Technology to Support Dyadic Caregiving for Individuals Living With Heart Failure: Qualitative Descriptive Study.

BACKGROUND: The demand for health services to meet the chronic health needs of the aging population is significant and remains unmet because of the limited supply of clinical resources. Specifically, in managing heart failure (HF), digital health sought to address this gap during the COVID-19 pandemic but highlighted an access issue for those who could not use technology-mediated health care services without the support of their informal caregivers (ICs). The complexity of managing HF symptoms and recurrent exacerbations requires many patients to comanage their illness with their ICs in a care dyad, working together to optimize patient outcomes and health-related quality of life. However, most HF programs have missed the opportunity to consider the dyadic perspective despite interdependencies on HF outcomes. OBJECTIVE: This study aims to characterize the value of technology in supporting caregiving for individuals living with HF. METHODS: Motivated by an observed unique pattern of engagement in patients enrolled in our Medly HF management program at the Peter Munk Cardiac Centre in Toronto, Canada, we conducted 20 semistructured interviews with a convenience sample of ICs. All interviews were analyzed using the iterative refinement of a codeveloped codebook. The team maintained reflexivity journals to reflect the impact of their positionality on their coding. Themes were first derived deductively using HF typologies (patient-oriented dyads, caregiver-oriented dyads, and collaboratively oriented dyads) and then inductively refined and recategorized based on concepts from the van Houtven et al framework. RESULTS: We believe that there is a need to formally and intentionally expand HF technologies to include dyadic needs and goals. We suggest defining 3 opportunities in which value can be added to technological design. First, identify how technology may be leveraged to increase psychological bandwidth by reducing uncertainty and providing peace of mind. We found that actionable feedback was highly desired by both partners. Second, develop technology that can serve as a member of the dyad's support system. In our experience, automated prompts for patients to take measurements can mimic the support typically provided by ICs and ease their workload. Third, consider how technology can mitigate the dyad's clinical knowledge requirements and learning curve. Our approach includes real-time actionable feedback paired with a human-in-the-loop, nurse-led model of care. CONCLUSIONS: Our findings identified a need to focus on improving the dyadic experience as a whole by building IC functionality into digital health self-management interventions. Through a shared model of care that supports the role of the patient in their own HF management, includes ICs to expand and enhance the patient's capacity to care, and acknowledges the need of ICs to care for themselves, we anticipate improved outcomes for both partners.

The Future of Virtual Care for Older Ethnic Adults Beyond the COVID-19 Pandemic.

The COVID-19 pandemic has fundamentally changed how Canadians access health care. Although it is undeniable that the rapid adoption of virtual care has played a critical role in reducing viral transmission, the gap in equitable access to virtual care remains pervasive for Canada's aging and ethnocultural minority communities. Existing virtual care solutions are designed for the English-speaking, health-literate, and tech-savvy patient population, excluding older ethnic adults who often do not see themselves reflected in these identities. In acknowledging the permanency of virtual care brought on by the pandemic, we have a collective responsibility to co-design new models that serve our older ethnic patients who have been historically marginalized by the status quo. Building on existing foundations of caregiving within ethnocultural minority communities, one viable strategy to realize culturally equitable virtual care may be to engage the highly motivated and skilled family caregivers of older ethnic adults as partners in the technology-mediated management of their chronic disease. The time is now to build a model of shared virtual care that embraces Canada's diverse cultures, while also providing its older ethnic adults with access to health innovations in partnership with equally invested family caregivers who have their health at heart.

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 2-East Asian, South Asian, and African, Caribbean, and Black Canadians.

BACKGROUND: Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada, along various demographic dimensions. In this article, we review existing evidence about inequitable access to KT and LDKT for patients from communities marginalized by race and ethnicity in Canada. OBJECTIVE: To characterize the currently published data on rates of KT and LDKT among East Asian, South Asian, and African, Caribbean, and Black (ACB) Canadian communities and to answer the research question, "what factors may influence inequitable access to KT among East Asian, South Asian, and ACB Canadian communities?." ELIGIBILITY CRITERIA: Databases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in East Asian, South Asian, and ACB Canadian communities. A total of 25 articles were analyzed thematically. SOURCES OF EVIDENCE: Gray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases. CHARTING METHODS: Literature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review. RESULTS: East Asian, South Asian, and ACB communities in Canada face barriers in accessing culturally appropriate medical knowledge and care and experience inequitable access to KT. Potential barriers include gaps in knowledge about ESKD and KT, religious and spiritual concerns, stigma of ESKD and KT, health beliefs, social determinants of health, and experiences of systemic racism in health care. LIMITATIONS: This review included literature that used various methodologies and did not assess study quality. Data on ethnicity and race were not reported or defined in a standardized manner. The communities examined in this review are not homogeneous and views on organ donation and KT vary by individual. CONCLUSIONS: Our review has identified potential barriers for communities marginalized by race and ethnicity in accessing KT and LDKT. Further research is urgently needed to better understand the barriers and support needs of these communities, and to develop strategies to improve equitable access to LDKT for the growingly diverse population in Canada.

CONTEXTE: La transplantation rénale (TR), une des options de traitement de l'insuffisance rénale terminale (IRT), est associée à une meilleure qualité de vie et à une prolongation de la survie comparativement à la dialyse. Au Canada, les inégalités dans l'accès à la transplantation et plus particulièrement à la transplantation d'un rein provenant d'un donneur vivant (TRDV) ont été documentées selon diverses dimensions démographiques. Cet article fait état des données existantes sur les inégalités d'accès à la TR et à la TRDV des Canadiens issus de communautés marginalisées en raison de la race et de l'ethnicité. OBJECTIFS: L'objectif est bipartite: 1) caractériser les données publiées sur les taux de TR et de TRDV parmi les Canadiens des communautés noires originaires d'Afrique et des Caraïbes (NAC) et les Canadiens originaires de l'Asie de l'Est et de l'Asie du Sud; 2) répondre à la question de recherche « Quels facteurs pourraient mener à un accès inéquitable à la TR pour les Canadiens des communautés NAC et des communautés est-asiatiques et sud-asiatiques? ¼. CRITÈRES D'ADMISSIBILITÉ: Les bases de données et la littérature grise ont été passées en revue en juin et novembre 2020 à la recherche d'articles de recherche originaux (texte intégral) ou de ressources de la littérature grise traitant de l'accès à la TR ou des obstacles rencontrés par les Canadiens des communautés NAC et des communautés est-asiatiques et sud-asiatiques. En tout, 25 articles ont été analysés de façon thématique. SOURCES: La littérature grise et les bases de données CINAHL, OVID Medline, OVID Embase et Cochrane. MÉTHODOLOGIE: Les caractéristiques tirées de la littérature ont été consignées et les conclusions décrivant les taux de TR et les facteurs influençant l'accès ont été résumées sous forme de compte rendu. Les principaux thèmes ont été dégagés puis synthétisés thématiquement. RÉSULTATS: Les Canadiens des communautés NAC, est-asiatiques et sud-asiatiques se heurtent à divers obstacles dans l'accès à des informations et des soins médicaux adaptés à leur culture, ce qui entraîne un accès inéquitable à la TR. Le manque de connaissances concernant l'IRT et la TR, les préoccupations religieuses et spirituelles, la stigmatisation de l'IRT et de la TR, les croyances en matière de santé, les déterminants sociaux de la santé et les expériences de racisme systémique dans les soins de santé figurent parmi les possibles obstacles rencontrés. LIMITES: Cette revue inclut de la documentation dont la méthodologie varie, et la qualité des études retenues n'a pas été évaluée. Les données sur la race et l'ethnicité n'étaient pas consignées ou définies de façon normalisée. Les communautés examinées ne sont pas homogènes, les avis individuels sur le don d'organes et la TR pourraient varier. CONCLUSION: Cet examen de la portée a permis de cerner les obstacles dans l'accès à la TR et à la TRDV rencontrés par les patients des communautés marginalisées en raison de la race et de l'ethnicité. Il est urgent de poursuivre la recherche afin de mieux comprendre les obstacles et les besoins de soutien de ces communautés et pour élaborer des stratégies qui permettront un accès plus équitable à la TRDV à la population de plus en plus diversifiée du Canada.

Barriers to Accessing Kidney Transplantation Among Populations Marginalized by Race and Ethnicity in Canada: A Scoping Review Part 1-Indigenous Communities in Canada.

BACKGROUND: Kidney transplantation (KT), a treatment option for end-stage kidney disease (ESKD), is associated with longer survival and improved quality of life compared with dialysis. Inequities in access to KT, and specifically, living donor kidney transplantation (LDKT), have been documented in Canada along various demographic dimensions. In this article, we review existing evidence about inequitable access and barriers to KT and LDKT for patients from Indigenous communities in Canada. OBJECTIVE: To characterize the current state of literature on access to KT and LDKT among Indigenous communities in Canada and to answer the research question, "what factors may influence inequitable access to KT among Indigenous communities in Canada." ELIGIBILITY CRITERIA: Databases and gray literature were searched in June and November 2020 for full-text original research articles or gray literature resources addressing KT access or barriers in Indigenous communities in Canada. A total of 26 articles were analyzed thematically. SOURCES OF EVIDENCE: Gray literature and CINAHL, OVID Medline, OVID Embase, and Cochrane databases. CHARTING METHODS: Literature characteristics were recorded and findings which described rates of and factors that influence access to KT were summarized in a narrative account. Key themes were subsequently identified and synthesized thematically in the review. RESULTS: Indigenous communities in Canada experience various barriers in accessing culturally safe medical information and care, resulting in inequitable access to KT. Barriers include insufficient incorporation of Indigenous ways of knowing and being in information dissemination and care for ESKD and KT, spiritual concerns, health beliefs, logistical hurdles to accessing care, and systemic mistrust resulting from colonialism and systemic racism. LIMITATIONS: This review included studies that used various methodologies and did not assess study quality. Data on Indigenous status were not reported or defined in a standardized manner. Indigenous communities are not homogeneous and views on organ donation and KT vary by individual. CONCLUSIONS: Our scoping review has identified potential barriers that Indigenous communities may face in accessing KT and LDKT. Further research is urgently needed to better understand barriers and support needs and to develop strategies to improve equitable access to KT and LDKT for Indigenous populations in Canada.

CONTEXTE: La transplantation rénale (TR), une des options de traitement de l'insuffisance rénale terminale (IRT), est associée à une meilleure qualité de vie et à une prolongation de la survie comparativement à la dialyse. Au Canada, les inégalités dans l'accès à la transplantation et plus particulièrement à la transplantation d'un rein provenant d'un donneur vivant (TRDV) ont été documentées selon diverses dimensions démographiques. Cet article fait état des données existantes sur les inégalités d'accès à la TR et à la TRDV des patients canadiens d'origine autochtone. OBJECTIFS: Caractériser les données publiées sur les taux de TR et de TRDV chez les Canadiens d'origine autochtone et répondre à la question de recherche « Quels facteurs pourraient mener à un accès inéquitable à la TR pour les autochtones du Canada? ¼. CRITÈRES D'ADMISSIBILITÉ: Les bases de données et la littérature grise ont été passées en revue en juin et novembre 2020 à la recherche d'articles de recherche originaux (texte intégral) ou de ressources de la littérature grise traitant de l'accès à la TR ou des obstacles rencontrés par les autochtones au Canada. En tout, 26 articles ont été analysés de façon thématique. SOURCES: La littérature grise et les bases de données CINAHL, OVID Medline, OVID Embase et Cochrane. MÉTHODOLOGIE: Les caractéristiques tirées de la littérature ont été consignées et les conclusions décrivant les taux de TR et les facteurs influençant l'accès ont été résumées sous forme de compte rendu. Les principaux thèmes ont été dégagés puis synthétisés thématiquement. RÉSULTATS: Les communautés autochtones du Canada rencontrent divers obstacles dans l'accès à des informations et des soins médicaux adaptés à leur culture, ce qui entraîne un accès inéquitable à la TR. Parmi ces obstacles, on note l'intégration insuffisante des façons d'être et de faire autochtones dans la prestation de soins et dans la diffusion d'informations sur l'IRT et la TR, des préoccupations d'ordre spirituel, des croyances en matière de santé, des obstacles logistiques dans l'accès aux soins, et une méfiance bien intégrée résultant du colonialisme et du racisme systémique. LIMITATIONS: Cette revue inclut de la documentation dont la méthodologie varie, et la qualité des études retenues n'a pas été évaluée. Les données sur le statut d'Autochtone n'étaient pas consignées ou définies de façon normalisée. Les communautés autochtones ne sont pas homogènes, les avis individuels sur le don d'organes et la TR pourraient varier. CONCLUSIONS: Cet examen de la portée a permis de cerner les obstacles dans l'accès à la TR et à la TRDV rencontrés par les patients autochtones du Canada. Il est urgent de poursuivre la recherche afin de mieux comprendre les obstacles et les besoins de soutien, et pour élaborer des stratégies visant un meilleur accès à la TRDV pour les autochtones du Canada.

Organ donation and transplant: The Islamic perspective.

Islam is the second most practiced religion globally, and the number of Muslims in Western countries has been increasing due to recent trends in migration. Studies have shown that Muslims in the Western world have more negative attitudes toward organ donation and transplantation compared with individuals from other religious backgrounds. Multiple barriers have been postulated that may prevent Muslims from exploring organ donation or transplantation. We conducted a literature review with the goal of summarizing the opinions of major Sunni and Shia scholars and Islamic bodies about organ donation and transplantation, including their opinions and rulings on the neurological determination of death to inform healthcare professionals, community members, and leaders. We also identified factors and attitudes that may prevent members of the Muslim community from achieving equitable access to transplantation or from consenting to donate organs during life or after death. Key factors or concerns identified included: lack of information regarding organ donation, mistrust of the healthcare system, family opinions, sacredness of the body, lack of clear understanding of religious rulings, and opinions of religious leaders. Studies have suggested that partnering with religious leaders to address these concerns may help foster positive attitudes toward organ donation and transplantation.