Care Transition Experiences Research Articles

CARE TRANSITIONS FROM HOSPITAL TO HOME: PERSPECTIVES FROM OLDER ADULTS, CAREGIVERS, AND HEALTHCARE PROFESSIONALS

Abstract Background Saudi Arabia switched from hospital-focused to home-based care for older persons with long-term care needs due to a 25% increase in acute hospital bed occupancy for non-acute older adults. Healthcare professionals, older adults, and families are affected by the change in the care transition. Improvement in health outcomes depends on understanding all three groups. Aim This study aims to investigate the hospital-to-home transition of older adults with chronic conditions. The objective is to identify factors that facilitate or hinder the transition, with the aim of improving care during this critical phase. Methods The research employed a descriptive case study analysed with thematic analysis and an institutional ethnography. Pre- and post-discharge data were obtained from older adults, carers, and healthcare workers at King Saud Medical City using semi-structured interviews, focus groups, participatory observation, and documentary analysis. Findings The findings indicate that culture, family, and national healthcare policies play a crucial role. Older adults and their caregivers encounter obstacles during the transition process, including gender segregation causing difficulties with care coordination. The lack of standardised post-discharge follow-up and fragmented care provision further contribute to these hurdles. Conclusion The research recommends creating a unified administration system as a necessary foundation for solving the largest problems in the transition. This may help Saudi Arabia’s care policymakers and planners create a family-centred healthcare system. Future research should focus on targeted strategies to improve the care transition experiences of older adults and their caregivers.

CARE TRANSITION EXPERIENCES OF HISPANIC PATIENTS WITH DEMENTIA FOLLOWING EMERGENCY DEPARTMENT DISCHARGE

Abstract Older patients report fragmented emergency department (ED) care, including insufficient communication with clinicians and inadequate referrals to outpatient care and social services. These challenges are likely even greater for those with cognitive impairment (CI) and their care partners (CPs) and especially for non-English speaking populations, where language differences bring additional challenges. This study seeks to fill a gap in the literature by exploring ED discharge care transition experiences for Hispanic patients with dementia. Ten dyads - consisting of a patient with CI or dementia diagnosis and their CP - were enrolled in the ED and completed semi-structured interviews (via video or telephone) 1 week later addressing their ED and post-discharge experiences. Interviews investigated participants’ experiences in the ED and subsequent care transitions back to the community. Interviews were recorded, transcribed and coded by three research team members for thematic content, adopting a combined deductive-inductive approach until thematic saturation was reach across all dyads. Prespecified codes were adapted using the National Quality Forum’s Quality Measurement Framework on ED Transitions of Care and included eight outcomes for ED transitions of care: accessibility of services, shared decision-making, connection and alignment, care coordination, information sharing/communication, safety, healthcare utilization/costs, and experience of care. Key study findings emphasize patient and care partner priorities of shared decision-making with the ED treating team, how patients and care partners manage language barriers and cognitive impairment challenges and identifying factors that either support or hinder the quality and safety of ED discharge care and transitions back home.

Health care transition for autistic adolescents and young adults: A pilot rural and urban comparison survey study.

Autistic adolescents and young adults in rural areas face significant challenges in health care transition compared to their urban counterparts. Health care transition, the process of moving from pediatric to adult health care, is crucial for the long-term health outcomes of adolescents and young adults. Previous research indicates rural adolescents and young adults often have greater unmet medical and financial needs, affecting their transition experiences, but there was no study focusing on rural autistic adolescents and young adults' health care transition experiences. This pilot study provides a comparative analysis of the health care transition experiences of rural and urban autistic adolescents and young adults. Ninety-six urban and 84 rural participants (14-25 years old) participated in the study. Their average age was 19.67 years. Just over half of the participants had completed the transition to adult care, typically reporting finishing this process at around 18 years old. A majority had limited discussions with their doctors about transitioning, and those who had discussions often started these conversations late. It also reveals that the responses completed by or with parents of autistic adolescents and young adults tend to indicate that the adolescents and young adults would not make future medical decisions or are uncertain about it. The findings underscore the necessity for targeted support for autistic adolescents and young adults during their health care transition process, regardless of their residence. There is a clear need for targeted health care transition interventions for adolescents and young adults, parents, and health care providers to ensure autistic adolescents and young adults and their families receive adequate support during the health care transition process.

Survivorship preparedness and activation among survivors of lymphoma.

Taking an active role in managing post-treatment care has emerged as a key aspect of promoting a successful transition into survivorship and is associated with better patient outcomes. In this study, we focus on two key aspects of active self-management, activation and preparedness. Activation was defined as understanding one's role in the care process and having the knowledge, skill, and confidence to take on a role in managing self-care. Preparedness was defined as the extent to which individuals perceived they had sufficient information about what to expect after cancer treatments are completed. The study goal was to characterize survivorship preparedness and activation among lymphoma survivors within 5years of treatment completion in New Jersey and examine the association of sociodemographic, medical, care transition experiences, practical concerns, and psychosocial factors with activation and preparedness. One hundred and one Hodgkin lymphoma or non-Hodgkin lymphoma survivors who had completed treatment within 5years completed a survey of survivorship care experiences (response rate = 34.12%). Approximately 60% of survivors reported high activation, with similar percentages for higher preparedness. Less activated survivors were significantly (p < .05) younger, married, resided in a more deprived geographic area, and reported more fatigue and information needs. Less activated survivors reported recalling that their providers were significantly (p < .05) less likely to discuss long-term side effects, psychosocial needs, risk-reducing lifestyle recommendations, and how to manage other medical concerns. Fewer care transition practices were most strongly associated with lower preparedness. A significant proportion were not activated for survivorship, and both activation and preparedness were strongly associated with providers' survivorship transition practices. Implementing programs to foster more activation and preparedness for lymphoma survivorship care would benefit from education about recommended follow-up care and healthy lifestyle practices. Providers should routinely ask about their patients' confidence and preparedness for survivorship and provide referrals for appropriate care as needed.

Turning 18 in mental health services: a multicountryqualitative study of service user experiences and views.

Worldwide, the division between Child and Adolescent Mental Health Services (CAMHS) and Adult Mental Health Services (AMHS) has frequently resulted in fragmented care with an unprepared, non-gradual transition. To improve continuity of care and other service transition experiences, service user input is essential. However, such previous qualitative studies are from a decade ago or focused on one mental disorder or country. The aim of the present study was to learn from service users' transition experiences and suggested improvements. Semi-structured interviews were held with young people aged 18-24 and/or parents/caregivers in the United Kingdom, Ireland, the Netherlands and Croatia. Inclusion was based on the experience of specialist mental health care before and after turning 18. Thematic analysis of transcribed and translated interview transcripts was performed using ATLAS.ti 9. Main themes of service user experiences included abrupt changes in responsibilities, various barriers and a lack of preparation, communication and ongoing care. Young people expressed a great need for continuity of care. Their suggestions to improve transitional care included early and adequate preparation, joint working, improved communication from and between services, overlapping services, staying at CAMHS for longer and designated youth mental health teams. Young people who experienced care before and after turning 18 suggested either altering the age limits of services or ensuring early preparation and communication regarding the transition and finding AHMS. This communication should include general changes when turning 18. Further considerations include increasing collaboration and overlap between CAMHS and AMHS.

Health care transition experiences of young adults with medical complexity

BackgroundTransition from pediatric to adult healthcare and services is an important event in the life course of all youth, including youth living with medical complexity. Data from the National Survey of Children’s Health indicates less than 20 % of youth receive health care transition services. The goal of our study was understanding the support, tools and resources that facilitate successful health care transition of young adults living with medical complexity. MethodsYoung adults living with medical complexity and their parents shared their lived experience of ‘what worked’ and ‘what is needed’ for successful health care transition during focus group sessions. Content analysis of transcripts used an iterative and deductive approach guided by a priori themes. FindingsThe voices of ten young adults and fourteen parents were shared during three virtual focus group sessions. They described health care transition (HCT) as an individualized process with success relying on consistent, clearly-defined and systemwide guidelines and resources. Moving from pediatric/family-focused care to adult/patient-focused care requires increased self-management and young adults often felt under-prepared for this role. Support from formal transition coordinators would improve communication between the multiple health, county/state agency and education systems involved during the transition period. ConclusionsUnderstanding the support, tools, and resources specifically needed by young adults with medical complexity for successful pediatric to adult health care transition is a critical first step in addressing the documented lack of transition services for this vulnerable population. This includes formal peer support programs for young adults with medical complexity and their parents.

Examining the Care Transition Experiences of Home Care Clients Using Journey Mapping

As a priority area of the Canadian government, home care is heavily relied on to support an integrated, accessible, and sustainable health system. VHA Home Healthcare is a large home care agency in Ontario, Canada. Home care provides services that span personal support, nursing, physical and occupational therapy and more to assist people in remaining in their homes and community. Although home care is associated with delayed and reduced hospital use, some home care recipients will require hospital admission. Unplanned hospital admissions in Ontario account for CAD 1.2 billion in healthcare spending. However, to date, little attention has been paid to the unique needs of clients receiving home care and experiencing a transition to and from the hospital. The proposed study aimed to answer the following research questions:&#x0D; 1)What is the experience of home care clients transitioning from home to hospital and back home and having their home care services resumed?&#x0D; 2)What are opportunities and recommendations to better support home care clients transitioning to and from the hospital?&#x0D; Our study used a descriptive qualitative design by conducting individual interviews and applying a patient journey mapping approach. Patient journey mapping involved identifying the clients’ experience, their touch points across the system, pain points and facilitators. A total of 7 clients and caregivers participated in 12 interviews across two phases. We analyzed the data using qualitative content analysis, and aggregated findings visually depicted the journey on a map. Our results demonstrated that participants experienced hospital admissions as challenging, whether planned or unplanned. Pain points involved having an adverse outcome while in the hospital, including missed or delayed care, attempting to seek additional information to fill knowledge gaps, and sensing not being listened to. Once discharged, clients reported managing multiple service providers and agencies for exacerbated care needs and receiving inconsistent and limited information when in the community. Participants described the system and individual facilitators that mitigated the pain points. These involved having consistent and supportive coordinators and providers in the community before and after the discharge home, having a discharge plan, and accessing an interprofessional team when hospitalized. At a personal level, many participants relied on past professional and personal experience when advocating and navigating the health care system. Self-advocacy skills were essential to ensure that participants had a quality care transition. Our study has several important implications. Notably, patient journey mapping is an effective tool to diagram the home care client journey. Findings also indicate that clients and caregivers often mitigate poor outcomes using advocacy skills and personal and professional experiences. To this end, we can learn from client journeys and leverage clients’ lived experiences to design interventions targeting pain points during care transitions.

Hospital‐to‐home care transition for dementia patients and family care partners: communication, decision‐making, and support experience of a culturally diverse sample

AbstractBackgroundPersons living with dementia (PLWD) are twice as likely to be hospitalized than non‐dementia peers, and while hospitalized, more likely to suffer from delirium, falls, procedure‐related complications, and death. PLWDs and their care partners (CPs) need support and preparation for hospital‐to‐home transition to avoid unnecessary readmission to hospitals. The current study aims to identify and examine communication, decision‐making, and caregiver support experience of racially and financially diverse PLWDs/CP dyads during hospital‐to‐home care transition in the U.S.MethodWe analyzed preliminary data from an ongoing mixed methods study of care transition experience of hospitalized PLWD/CP dyads. We used survey and hospital case notes data from 22 dyads and in‐depth interviews with 12 CPs recruited from two urban hospitals. We conducted descriptive and content analysis with quantitative and qualitative data.ResultHalf of PLWDs were non‐white (50%), frail with recent history of fall (68%) or hospitalization (50%) in the last three months, lacked advance directives (46%), and received palliative care consult while hospitalized (77%). Majority of CPs were non‐White (68%), PLWD’s adult child/grandchild (64%), and reported knowing a little or not much at all about dementia (82%). Themes on CP communication, decision‐making and caregiving support emerged: CPs find surrogate decision‐making difficult; proactive palliative care prepares CPs for terminal trajectory of dementia; CPs need education and training on hands‐on caregiving tasks to keep PLWDs safe and comfortable at home; and CPs’ social needs need to be addressed to achieve goals of care for PLWDs.ConclusionPLWDs and CPs need education, training, coaching, and individualized support during care transitions in order to develop self‐efficacy and maintain resilience. Palliative care, currently offered in over 80% of U.S. hospitals, provides important education and support for PLWDs and CPs. However, palliative care support ends after discharge for most families. Findings from our study suggest that continuing comprehensive palliative care support after discharge may be needed, when PLWD and CPs may need support the most. Future studies should examine needs of PLWDs and CPs living in communities and the role of palliative care to address informational and support needs.

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.

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. 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. 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. 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. 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. PRR1-10.2196/46115.

The hospital-to-home care transition experience of home care clients: an exploratory study using patient journey mapping

BackgroundCare transitions have a significant impact on patient health outcomes and care experience. However, there is limited research on how clients receiving care in the home care sector experience the hospital-to-home transition. An essential strategy for improving client care and experience is through client engagement efforts. The study's aim was to provide insight into the care transition experiences and perspectives of home care clients and caregivers of those receiving home care who experienced a hospital admission and returned to home care services by thematically and illustratively mapping their collective journey.MethodsThis study applied a qualitative descriptive exploratory design using a patient journey mapping approach. Home care clients and their caregivers with a recent experience of a hospital discharge back to the community were recruited. A conventional inductive approach to analysis enabled the identification of categories and a collective patient journey map. Follow-up interviews supported the validation of the map.ResultsSeven participants (five clients and two caregivers) participated in 11 interviews. Participants contributed to the production of a collective journey map and the following four categories and themes: (1) Touchpoints as interactions with the health system; Life is changing; (2) Pain points as barriers in the health system: Sensing nobody is listening and Trying to find a good fit; (3) Facilitators to positive care transitions: Developing relationships and gaining some continuity and Trying to advocate, and (4) Emotional impact: Having only so much emotional capacity.ConclusionsThe patient journey map enabled a collective illustration of the care transition depicted in touchpoints, pain points, enablers, and feelings experienced by home care recipients and their caregivers. Patient journey mapping offers an opportunity to acknowledge home care clients and their caregivers as critical to quality care delivery across the continuum.

Developing an in-depth understanding of patient and caregiver engagement across care transitions from hospital: protocol for a qualitative study exploring experiences in Canada

IntroductionPatient and caregiver engagement is critical, and often compromised, at points of transition between care settings, which are more common, and more challenging, for patients with complex medical problems. The...

Factors associated with health-related quality of life in a cohort of cancer survivors in New Jersey

BackgroundAlthough there is extensive literature on correlates of health-related quality of life (HRQoL) among cancer survivors, there has been less attention paid to the role of socioeconomic disadvantage and survivorship care transition experiences in HRQoL. There are few large cohort studies that include a comprehensive set of correlates to obtain a full picture of what is associated with survivors’ HRQ0L. This cohort study of recent cancer survivors in New Jersey aimed to explore the association between social determinants of health, health history, health behaviors, survivorship care experiences, and psychosocial factors in HRQoL.MethodsEligible survivors were residents of New Jersey diagnosed with genitourinary, female breast, gynecologic, colorectal, lung, melanoma, or thyroid cancers. Participants completed measures of social determinants, health behaviors, survivorship care experiences, psychosocial factors, and HRQoL. Separate multiple regression models predicting HRQoL were conducted for each of the five domains (social determinants, health history, health behaviors, survivorship care experiences, psychosocial factors). Variables attaining statistical significance were included in a hierarchical multiple regression arranged by the five domains.Results864 cancer survivors completed the survey. Lower global HRQoL was associated with being unemployed, more comorbidities, a less healthy diet, lower preparedness for survivorship, more unmet support needs, and higher fear about cancer recurrence. Two psychosocial factors, unmet support needs and fear of recurrence, played the most important role in HRQoL, accounting for more than 20% of the variance. Both unmet support needs and fear of recurrence were significant correlates of physical, functional, and emotional HRQoL domains.ConclusionsInterventions seeking to improve cancer survivors’ HRQoL may benefit from improving coordinated management of comorbid medical problems, fostering a healthier diet, addressing unmet support needs, and reducing survivors’ fears about cancer recurrence.

Patient Perspectives on Care Transitions From Hospital to Home

Understanding 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. To gather data about patients' care transition experiences and factors associated with follow-up appointment completion. A 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. Care transition experiences. The primary outcome was to identify patient-perceived gaps during care transition experiences, including postdischarge follow-up. On 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). An 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.

Development of the Socioeconomic Screening, Active Engagement, Follow-up, Education, Discharge Readiness, and Consistency (SAFEDC) Model for Improving Transitions of Care: Participatory Design.

BackgroundTransition to home after hospitalization involves the potential risk of adverse patient events, such as knowledge deficits related to self-care, medication errors, and readmissions. Despite broad organizational efforts to provide better care transitions for patients, there are challenges in implementing interventions that effectively improve care transition outcomes, as evidenced by readmission rates. Collaborative efforts that require health care professionals, patients, and caregivers to work together are necessary to identify gaps associated with transitions of care and generate effective transitional care interventions.ObjectiveThis study aims to understand the usefulness of participatory design approaches in identifying the design implications of transition of care interventions in health care settings. Through a series of participatory design workshops, we have brought stakeholders of the health care system together. With a shared understanding of care transition and patient experience, we have provided participants with opportunities to generate possible design implications for care transitions.MethodsWe selected field observations in clinical settings and participatory design workshops to develop transitional care interventions that serve each hospital’s unique situation and context. Patient journey maps were created and functioned as tools for creating a shared understanding of the discharge process across different stakeholders in the health care environment. The intervention sustainability was also assessed. By applying thematic analysis methods, we analyzed the problem statements and proposed interventions collected from participatory design workshops. The findings showed patterns of major discussion during the workshop.ResultsOn the basis of the workshop results, we formalized the transition of care model—the socioeconomic, active engagement, follow-up, education, discharge readiness tool, and consistency (Integrated Michigan Patient-centered Alliance in Care Transitions transition of care model)—which other organizations can apply to improve patient experiences in care transition. This model highlights the most significant themes that should necessarily be considered to improve the transition of care.ConclusionsOur study presents the benefits of the participatory design approach in defining the challenges associated with transitions of care related to patient discharge and generating sustainable interventions to improve care transitions.

Survivorship transition care experiences and preparedness for survivorship among a diverse population of cancer survivors in New Jersey.

The aims were (1) to characterise preparedness for survivorship and (2) to evaluate sociodemographic, medical, survivorship care transition experiences (e.g., receiving a survivorship care plan), practical (e.g., cancer-related financial hardships and information needs) and psychological (e.g., fear of recurrence) factors with preparedness for survivorship. Three hundred and forty-six residents of Southern New Jersey who were diagnosed in 2015 or 2016 with bladder, breast, gynaecological, colorectal, lung, melanoma, prostate or thyroid cancer were identified and consented by the New Jersey State Cancer Registry. Participants completed a questionnaire assessing preparedness, provider care transition practices, financial hardships, information needs and fear of cancer recurrence. Correlations and multivariate analyses were conducted to identify factors associated with preparedness for survivorship. Participants reported feeling somewhat prepared for survivorship. More than half reported not receiving a written survivorship care plan and many desired more information about follow-up tests, symptoms monitoring and maintaining good nutrition and health. Receipt of chemotherapy, limited transition care planning, limited discussion of medical and psychosocial effects, high information needs and financial hardship were predictors of low preparedness. Identifying and addressing factors associated with survivorship preparedness at end of treatment and over cancer survivorship trajectory will foster higher quality survivorship experiences.

224: Moving up: Health care transition experiences of adolescents and young adults with cystic fibrosis

224: Moving up: Health care transition experiences of adolescents and young adults with cystic fibrosis

Parent and Physician Qualitative Perspectives on Reasons for Pediatric Hospital Readmissions.

One in 5 parents report a problem in their child's hospital-to-home transition, leading to adverse events, dissatisfaction, and readmissions. Although researchers in several studies have explored parent insights into discharge needs, few have explored perceptions of causes for pediatric readmissions. We sought to investigate factors contributing to pediatric readmissions, from both parent and physician perspectives. We conducted a qualitative study using semistructured interviews with parents, discharging and readmitting physicians, and subspecialist consultants of children readmitted within 30 days of initial discharge from the pediatric ward at an urban nonfreestanding children's hospital. Participants were interviewed during the readmission and asked about care transition experiences during the initial admission and potential causes and preventability of readmission. Data were analyzed iteratively by using a constant-comparative approach. We identified major themes, solicited feedback, and inferred relationships between themes to develop a conceptual model for preventing readmissions. We conducted 53 interviews from 20 patient readmissions, including 20 parents, 20 readmitting physicians, 11 discharging physicians, and 3 consulting subspecialists. Major themes included the following: (1) unclear roles cause lack of ownership in patient care tasks, (2) lack of collaborative communication leads to discordant understanding of care plans, and (3) incomplete hospital-to-home transitions result in ongoing reliance on the hospital. Clear definition of team member roles, improved communication among care team members and between care teams and families, and enhanced care coordination to facilitate the hospital-to-home transition were perceived as potential interventions that may help prevent readmissions.

Using meta-ethnography to understand the care transition experience of people with dementia and their caregivers.

Older adults living with dementia are at risk for more complex health care transitions than individuals without this condition, non-impaired individuals. Poor quality care transitions have resulted in a growing body of qualitative empirical literature that to date has not been synthesized. We conducted a systematic literature review by applying a meta-ethnography approach to answer the following question: How do older adults with dementia and/or their caregivers experience and perceive healthcare transition: Screening resulted in a total of 18 studies that met inclusion criteria. Our analysis revealed the following three categories associated with the health care transition: (1) Feelings associated with the healthcare transition; (2) processes associated with the healthcare transition; and (3) evaluating the quality of care associated with the health care transition. Each category is represented by several themes that together illustrate an interconnected and layered experience. The health care transition, often triggered by caregivers reaching a “tipping point,” is manifested by a variety of feelings, while simultaneously caregivers report managing abrupt transition plans and maintaining vigilance over care being provided to their family member. Future practice and research opportunities should be more inclusive of persons with dementia and should establish ways of better supporting caregivers through needs assessments, addressing feelings of grief, ongoing communication with the care team, and integrating more personalized knowledge at points of transition.

Health care transitions for persons living with dementia and their caregivers

BackgroundPersons with dementia are likely to require care from various health care providers in multiple care settings, necessitating navigation through an often-fragmented care system. This study aimed to create a better understanding of care transition experiences from the perspectives of persons living with dementia and their caregivers in Ontario, Canada, through the development of a theoretical framework.MethodsConstructivist grounded theory guided the study. Seventeen individual caregiver interviews, and 12 dyad interviews including persons with dementia and their caregivers, were recorded and transcribed verbatim. The data were coded using NVivo 10 software; analysis occurred iteratively until saturation was reached.ResultsA theoretical framework outlining the context, processes, and influencing factors of care transitions was developed and refined. Gaining an in-depth understanding of the complex care transitions of individuals with dementia and their caregivers is an important step in improving the quality of care and life for this population.ConclusionThe framework developed in this study provides a focal point for efforts to improve the health care transitions of persons living with dementia.

11384 Medication Use Safety During Care Transitions for Children with Medical Complexity

ABSTRACT IMPACT: This study will generate preliminary data to address a critical, care transition-related patient safety gap involving medication use among children with medical complexity. OBJECTIVES/GOALS: The objectives of this study are: (1) to understand care transition-related medication safety risks for children with medical complexity (CMC), and (2) through a participatory, human centered design (PD) approach, to develop an early prototype intervention to address identified safety risks. METHODS/STUDY POPULATION: The study population includes children with medical complexity (CMC), a medically fragile pediatric population with intensive healthcare needs. CMC rely on multiple and complex medication regimens and/or medical devices for optimal functioning. Parents of CMC report multiple unmet healthcare needs. For Aim 1, we will conduct observations and interviews with ˜15 clinicians as well as semi-structured interviews with ˜30 family caregivers during three care transition experiences: from Cardiac ICU to home, Neonatal ICU to home, and those between primary care/specialty clinic to home. For Aim 2, we will conduct participatory design sessions with up to 5 participants (separately for clinicians and family caregivers) from each of the three care transition settings to co-design a prototype intervention. RESULTS/ANTICIPATED RESULTS: The study is currently recruiting family caregivers of CMC for aim 1 research activities, with interviews planned to be completed in February/March 2021. Transcribed interviews will be used to inform development of patient journey maps. A patient journey map helps to visually depict healthcare services through the patient and family lens, and highlights important ‘touch points’ along the patient journey (e.g., decisions, encounters, constraints, emotional states, etc.) that shape the patient and family experience. The journey map will distill findings from qualitative data and generate a concise visual story focused on the medication use experience of CMC as they transition between the hospital and their home. Individual journey maps will also be combined to generate a consolidated journey map. DISCUSSION/SIGNIFICANCE OF FINDINGS: An-in-depth understanding of medication safety risks unique to the context of CMC care would be essential to develop interventions that are useful, scalable, and sustainable. This is even more important because current interventions are primarily adopted from adult care settings with mixed outcomes.