Project description:BackgroundOlder adults with multimorbidity and complex care needs (CCN) are among those most likely to experience frequent care transitions between settings, particularly from hospital to home. Transition periods mark vulnerable moments in care for individuals with CCN. Poor communication and incomplete information transfer between clinicians and organizations involved in the transition from hospital to home can impede access to needed support and resources. Establishing digitally supported communication that enables person-centered care and supported self-management may offer significant advantages as we support older adults with CCN transitioning from hospital to home.ObjectiveThis protocol outlines the plan for the development, implementation, and evaluation of a Digital Bridge co-designed to support person-centered health care transitions for older adults with CCN. The Digital Bridge builds on the foundation of two validated technologies: Care Connector, designed to improve interprofessional communication in hospital, and the electronic Patient-Reported Outcomes (ePRO) tool, designed to support goal-oriented care planning and self-management in primary care settings. This project poses three overarching research questions that focus on adapting the technology to local contexts, evaluating the impact of the Digital Bridge in relation to the quadruple aim, and exploring the potential to scale and spread the technology.MethodsThe study includes two phases: workflow co-design (phase 1), followed by implementation and evaluation (phase 2). Phase 1 will include iterative co-design working groups with patients, caregivers, hospital providers, and primary care providers to develop a transition workflow that will leverage the use of Care Connector and ePRO to support communication through the transition process. Phase 2 will include implementation and evaluation of the Digital Bridge within two hospital systems in Ontario in acute and rehab settings (600 patients: 300 baseline and 300 implementation). The primary outcome measure for this study is the Care Transitions Measure-3 to assess transition quality. An embedded ethnography will be included to capture context and process data to inform the implementation assessment and development of a scale and spread strategy. An Integrated Knowledge Translation approach is taken to inform the study. An advisory group will be established to provide insight and feedback regarding the project design and implementation, leading the development of the project knowledge translation strategy and associated outputs.ResultsThis project is underway and expected to be complete by Spring 2024.ConclusionsGiven the real-world implementation of Digital Bridge, practice changes in the research sites and variable adherence to the implementation protocols are likely. Capturing and understanding these considerations through a mixed-methods approach will help identify the range of factors that may influence study results. Should a favorable evaluation suggest wide adoption of the proposed intervention, this project could lead to positive impact at patient, clinician, organizational, and health system levels.Trial registrationClinicalTrials.gov NCT04287192; https://clinicaltrials.gov/ct2/show/NCT04287192.International registered report identifier (irrid)PRR1-10.2196/20220.
Project description:ObjectiveTo identify the needs of caregivers of hospitalised adults with dementia in the hospital and during care transitions.DesignPragmatic qualitative inquiry with semi-structured interviews.SettingMichael E. DeBakey Veterans Affairs Medical Center in Houston, Texas, USA.Participants12 family caregivers (family member (n=11); friend (n=1)) and 15 health professionals (hospital medicine physicians (n=4), inpatient nurse case managers (n=2), social workers (n=4), outpatient geriatrics providers (n=2), a primary care provider (n=1), geriatric psychiatrists (n=2)) were interviewed. Caregivers were recruited while their care recipient was hospitalised and were interviewed at least 2 weeks after the care recipient was discharged from the hospital. Health professionals were eligible for the study if they provided care to patients with dementia in the inpatient or outpatient setting.ResultsFour recommendations emerged from the analysis: (1) engage caregivers as partners in the care team, (2) provide dementia-specific information and training, (3) connect caregivers to home and community-based services and (4) provide care navigation and support for the caregiver posthospitalisation.ConclusionsHospital care transitions are challenging for caregivers of hospitalised adults living with dementia. Care transition interventions designed to support caregivers with tailored, dementia-specific information and services are needed.
Project description:Unpaid/family caregivers provide support critical to older adult hospital-to-home transitions, but lack time and preparation. There is limited evidence regarding important collaboration for caregivers during the transition. The objective was to examine caregivers' process of collaborating with others, including other family members, healthcare professionals, and community, social, and professional networks, during older adult hospital-to-home transitions. This study utilized grounded theory methodology. One-on-one interviews were conducted with unpaid/family caregivers of an older adult during a hospital-to-home transition. Data were analyzed using open, axial, and selective coding. Participants (N = 16) relationship to the older adult included: partners (n = 8), friends (n = 4), children (n = 3), and siblings (n = 1). Most were female (n = 14) and living with the older adult (n = 10). A conceptual model was developed which illustrates participants' process through 3 stages: 1) identifying and learning the caregiver role, 2) collaborating with others to provide care and support to the older adult, while supporting themselves, during the hospital-to-home transition, and 3) supporting the older adult's progress in recovering independence or planning to provide long-term care and support. Participants described multiple approaches to collaborating with others: caring on own, caring in network, caring with healthcare professionals, and caring with social and professional networks. Implications include the need to recognize and promote utilization of care networks, as it may help address negative outcomes associated with caregiving. We also identified opportunities to further leverage caregivers' social/professional networks and increase focus on caregiver needs in healthcare encounters.
Project description:BackgroundAs the population is aging, the number of persons living with multiple chronic conditions (MCC) is expected to increase. This review seeks to answer two research questions from the perspectives of older adults with MCC, their caregivers and their health care providers (HCPs): 1) What are the health and social care needs of community-dwelling older adults with MCC and their caregivers? and 2) How do social and structural determinants of health impact these health and social care needs?MethodsWe conducted a scoping review guided by a refinement of the Arksey & O'Malley framework. Articles were included if participants were 55 years or older and have at least two chronic conditions. We searched 7 electronic databases. The data were summarized using thematic analysis.ResultsThirty-six studies were included in this review: 28 studies included participants with MCC; 12 studies included HCPs; 5 studies included caregivers. The quality of the studies ranged from moderate to good. Five main areas of needs were identified: need for information; coordination of services and supports; preventive, maintenance and restorative strategies; training for older adults, caregivers and HCPs to help manage the older adults' complex conditions; and the need for person-centred approaches. Structural and social determinants of health such as socioeconomic status, education and access influenced the needs of older adults with MCC.ConclusionThe review highlights that most of the needs of older adults with MCC focus on lack of access to information and coordination of care. The main structural and social determinants that influenced older adults' needs were their level of education/health literacy and their socioeconomic status.
Project description:ObjectiveImproving care transitions for older adults can reduce emergency department (ED) revisits, and the strain placed upon caregivers. We analyzed whether caregivers felt a change in burden following a care transition, and what may be improved to reduce it.MethodsThis mixed-methods observational study nested within LEARNING WISDOM included caregivers of older patients who experienced an ED care transition. Burden was collected with the brief Zarit Burden Interview (ZBI-12), and caregivers also commented on the care transition. A qualitative coding scheme of patient care transitions was created to reflect themes important to caregivers. Comments were randomly analyzed until saturation and themes were extracted from the data. We followed both the SRQR and STROBE checklists.ResultsComments from 581 caregivers (mean age (SD) 64.5 (12.3), 68% women) caring for patients (mean age (SD) 77.2 (7.54), 48% women) were analyzed. Caregivers overwhelmingly reported dissatisfaction and unmet service expectations, particularly with home care and domestic help. Communication and follow-up from the ED emerged as an area for improvement. Caregivers who reported an increased level of burden following a patient's care transition had significantly higher ZBI scores than caregivers who self-reported stable burden levels.ConclusionCaregivers with increasing, stable, and improved levels of subjective burden all reported areas for improvement in the care transition process. Themes centering on the capacity to live at home and inadequate communication were most frequently mentioned and may represent serious challenges to caregivers. Addressing these challenges could improve both caregiver burden and ED care transitions.
Project description:BackgroundIndigenous people continue to experience high rates of multiple chronic conditions (MCC) at younger ages than other populations, resulting in an increase in health and social care needs. Those who provide services designed to address MCC for Indigenous communities require synthesized information to develop interventions that meet the needs of their older adult population. This review seeks to answer the research question: What are the health and social care needs, priorities and preferences of Indigenous older adults (living outside of long-term care settings) with MCC and their caregivers?MethodsA scoping review, guided by a refinement of the Arksey & O'Malley framework, was conducted. Articles were included if the authors reported on health and social care needs and priorities of older Indigenous adults. We also included articles that focused on Indigenous conceptions of wellness, resilience, well-being, and/or balance within the context of aging, and articles where authors drew from Indigenous specific worldviews, ways of knowing, cultural safety, cultural competence, cultural appropriateness, cultural relevance and community needs.ResultsThis scoping review included 9 articles that were examined using an Indigenous determinants of health (IDH) theoretical framework to analyze the needs of older adults and CGs. Five areas of needs were identified: accessible health services; building community capacity; improved social support networks; preservation of cultural values in health care; and wellness-based approaches.ConclusionThe review highlights key determinants of health that influenced older adults' needs: education and literacy, ethnicity, and social support/network (proximal); health promotion and health care (intermediate); and a combination of historical and contemporary structures (distal). The findings highlight the importance of local Indigenous knowledge and perspectives to improve accessibility of culturally relevant health and social services.
Project description:Homebound older adults have not had a voice in establishing a research agenda relevant to their needs and perspectives. We engaged homebound older adults receiving home-based primary care and caregivers to serve as stakeholder advisors to develop a patient- and caregiver-centered research agenda for home-based care. Over 9 months, we facilitated eight tablet-enabled videoconference meetings. We oriented advisors to patient-centered outcome research and research question development. Advisors developed and prioritized a list of 14 research domains and 127 associated research questions. The top three prioritized research domains in descending rank order (number of associated research questions) were out-of-pocket costs of caregiving (10), access to home-based care and related policy issues (19), and relationship with doctors (15). This research agenda can guide researchers' efforts to focus on areas of importance to the ultimate end users of their research.
Project description:ImportanceUnderstanding the patient's perspective of their care transition process from hospital or skilled nursing facility (SNF) to home may highlight gaps in care and inform system improvements.ObjectiveTo gather data about patients' care transition experiences and factors associated with follow-up appointment completion.Design, setting, and participantsA survey tool was developed with input from patient advisors and organizations participating in a collaborative quality initiative. Seventeen hospitals, 12 practitioner organizations, and 6 SNFs in Michigan collaborated to identify shared patients who were aged 18 years and older, had a working telephone number, recently returned home or to an assisted living facility with a diagnosis of congestive heart failure or chronic obstructive pulmonary disease, or after an SNF stay. Using consecutive sampling, interviewers collected 5 telephone surveys per month. From October 2018 to December 2019, patients or caregivers were surveyed via telephone 8 to 12 days after discharge from a hospital or SNF. Data were analyzed from March 2020 to January 2022.ExposureCare transition experiences.Main outcomes and measuresThe primary outcome was to identify patient-perceived gaps during care transition experiences, including postdischarge follow-up.ResultsOn the basis of pilot data, the response rate was estimated at 34%, yielding 1257 surveys. Of 1257 survey respondents (mean [SD] age, 70 [12.94] years for 968 patients for whom age data was available), 654 (52%) were female; 829 (74%) were White, 250 (22%) were Black or African American, and 40 (4%) were another race. Eleven percent of patients reported not receiving a telephone number to call for postdischarge questions. Nearly 80% of patients (977 patients) received a follow-up telephone call, and most found it valuable. Twenty percent of patients (255 patients) reported at least 1 social determinant of health issue. Lack of transportation was associated with reduced likelihood of completing a follow-up visit, decreasing the odds of completing a follow-up by nearly 70% (odds ratio [OR], 0.31; 95% CI, 0.18-0.53; P < .001). Compared with other patient groups, Black patients were less likely to report completing a postdischarge follow-up visit (OR, 0.49; 95% CI, 0.36-0.67; P < .001) or to receive prescribed medical equipment (OR, 4.23; 95% CI, 1.30-13.83; P = .02).Conclusions and relevanceAn examination of patient discharge experiences from a hospital or SNF identified inconsistencies in care transition processes, social determinants of health issues needing to be addressed after discharge, and racial disparities between patients who attend follow-up appointments. Physicians should be aware of these findings and their consequences for patient experiences.
Project description:IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers' health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers' health-related quality of life (HRQOL) after care recipients' hospital discharge.Methods and analysisA multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient's discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30-45 min telephone support sessions over 6 months. The primary outcome is caregivers' HRQOL measured using the Assessment of Quality of Life-eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements.Ethics and disseminationParticipants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration numberACTRN12620000060943.
Project description:INTRODUCTION:People are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research. METHODS AND ANALYSIS:We will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O'Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate. ETHICS AND DISSEMINATION:This scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal.