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Objectives: Despite young carers (YCs) providing regular and significant care that exceeds what would normally be associated with an adult caregiver, we need to learn more about their experience interacting with the healthcare system. The primary study aims were to (1) describe YC experiences in interacting with the healthcare system and (2) identify types of support YC recognise as potentially helpful to their caring role., Design and Setting: A mixed-methods qualitative study was conducted between March 2022 and August 2022, comprising two phases of (1) semi-structured interviews and focus groups with YCs living in the community to confirm and expand earlier research findings, and (2) a co-design workshop informed by a generative research approach. We used findings from the interviews and focus groups to inform the brainstorming process for identifying potential solutions., Results: Eight YCs completed either a focus group or an interview, and four continued the study and participated in the co-design activity with 12 participants. Phase 1 resulted in three overarching themes: (1) navigating the YC role within the healthcare system; (2) being kept out of the loop; and (3) normalising the transition into caregiving. Phase 2 identified two categories: (1) YC-focused supports and (2) raising awareness and building capacity in the healthcare system., Conclusion: Study findings revealed the critical role that YCs play when supporting their families during pivotal interactions in the healthcare system. Like their older caregiver counterparts, YCs struggle to navigate, coordinate and advocate for their family members while juggling their needs as they transition from adolescence to adulthood. This study provides important preliminary insights into YCs encountering professionals, which can be used to design and implement national support structures., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Despite growing international interest, the caregiving body of literature lacks a recent understanding of young carers' experiences and their contact with the health care system. We conducted a systematic review of qualitative studies to (1) synthesize more recent qualitative evidence on young carers' experience, and (2) to identify how these young carers interact with the health care system in their caregiving role. Using a meta-ethnographic synthesis, a total of 28 empirical studies met inclusion. Key findings helped inform an overarching framework of the experience of young carers as illustrated by a journey map. The journey map is a visual depiction of the stages these young carers go through when in a caregiving role framed by three themes: (1) encountering caregiving; (2) being a young caregiver, and (3) moving beyond caregiving. The caregiving experience is perceived by young people as challenging and complex, which could be improved with more informational navigation and emotional support. Understanding these experiences provides insight into gaps in health services and potential solutions that align with the stages outlined in the journey map.

Background: Medication changes during transitions of care is a recognized challenge that has been linked to adverse events. The delivery of medication instructions during transition from hospital to home is a priority area for improvement., Objective: The goals of this work were to 1) understand the current experiences of patients and families; and 2) co-design tools to improve medication information transfer during transitions of care together with patients, families, and providers., Methods: A participatory action approach, using mixed methods within a design thinking framework was used. Participants were chosen from patient groups at higher risk of adverse events, guided by extreme user design, which posits that needs of extreme users can also fit the majority. Providers, patients and family (users) were interviewed to understand current experiences with medication information transfer during transitions of care and to solicit input on potential elements to inform tool design. Users were engaged in iterative creation of prototypes., Results: A total of 116 patients, family caregivers, and providers were engaged throughout this project. Findings highlighted challenges currently experienced, strengthening the case for tools that engage the patient and family in medication information transfer. Important information included why medications were prescribed, how to take them, side effects, and an explanation of the role of community pharmacists. Displaying information in a grid format was preferred. Two tools were prototyped: (1) A Medication Whiteboard for engaging patients and families in creating their medication routine, and (2) A Patient Oriented Medication List for providing medication instructions and as a reference once patients are home., Conclusions: Through the use of mixed methods within a design thinking framework, the team was able to understand the challenges and design prototypes of tools that both engage patients and families in developing their medication routine and improve medication information transfer during transitions of care., (Copyright © 2021 The Author(s). Published by Elsevier Inc. All rights reserved.)

Our qualitative descriptive study compared how older patients and their informal caregivers experienced the care transition from acute care or rehabilitation to home. We recruited patients 65 years of age or older, or their informal caregivers, from in-patient units within acute care hospitals and rehabilitation facilities to participate in semi-structured interviews. We identified emergent themes via thematic analysis. In all, 16 patients and four patient caregivers participated. Across all care settings, caregivers were integral in facilitating the transition as well as experiencing variable discharge preparation, health care providers' optimizing transitions, and missed care and medication discrepancies at transition points. Orthopedic and rehabilitation patients more commonly voiced prior transition experiences in discharge preparation, including having to unexpectedly coordinate and wait for outpatient services. Differing responses between acute care and orthopedic settings suggest that transitional care practices and policies favor an individualized approach that considers patients' previous experiences, needs, and care expectations.

Background: An admission to hospital for acute illness can be difficult for patients and lead to high levels of anxiety. Patients are given a lot of information throughout their hospital stay and instructions at discharge to follow when they get home. For complex medical patients, the ability to retain, understand, and adhere to these instructions is a critical marker of a successful transition. This study was undertaken to explore factors impacting the ability of patients to understand and adhere to instructions., Methods: A qualitative design of interviews with patients and caregivers was used. Participants were adult patients and caregivers with congestive heart failure, chronic obstructive pulmonary disease, or community-acquired pneumonia being discharged home from three academic acute care hospitals in Ontario, Canada. Semi structured interviews were conducted with participants within one week following their discharge from hospital. Interviews were audiotaped and transcribed. Five independent researchers participated in an iterative process of coding, reviewing, and analyzing the interviews using direct content analysis., Results: In total, 27 participants completed qualitative interviews. Analysis revealed the role of the caregiver to be critical in its relation to the ability of patients to understand and adhere to discharge instructions. Within the topic of caregiving, we draw on three areas of insight: The first clarified how caregivers support patients after they are discharged home from the hospital. The second highlighted how caregiver involvement impacts patient understanding and adherence to discharge instructions. The third revealed system factors that influence a caregiver's involvement when receiving discharge instructions., Conclusion: Caregivers play an important role in the transition of a complex medical patient by impacting a patient's ability to understand and adhere to their discharge instructions. The themes identified in this paper highlight opportunities for healthcare providers and institutions to effectively involve caregivers during transitions from acute care hospitals to home., Competing Interests: The authors have declared that no competing interests exist.

For hospitalized patients, the transition from hospital to home is frequently accompanied by a significant amount of information to absorb. The objective of this work was to engage patients, caregivers, and healthcare providers in codeveloping patient-oriented discharge instructions, (ie, a brief transition plan with information that patients want). Overseen by a multidisciplinary advisory team, a participatory action approach using mixed methods was employed. Although formal inclusion and exclusion criteria were not used, deliberate efforts were made to engage groups with language barriers and limited health literacy. Symbols were designed and validated with the patient groups to represent each section of information to make the form more understandable for these patients. A prototype was codesigned using an iterative process. The form has been adapted for use in multiple health settings and is currently undergoing a multisite pilot to evaluate its effect on patient and provider experience., (© 2015 Society of Hospital Medicine.)

Background: Unmet poststroke service needs are common among people living in the community. Community-Based Stroke Services (CBSS) have the potential to address these unmet needs, yet there are no comprehensive guidelines to inform the design of CBSS, and they remain an understudied aspect of stroke care. This study aimed to describe the perceived barriers to accessing community-based stroke services, benefits from these programs and opportunities to address unmet needs. Methods: This was a qualitative descriptive study with interviews and focus groups conducted with people living with stroke and caregivers. Data were transcribed and analyzed thematically. Results: Eighty-five individuals with stroke and caregivers participated. Four key overarching themes were identified: facilitators and barriers to accessing and participating in community-based stroke services; components of helpful and unhelpful stroke services; perceived benefits of community-based stroke services; and opportunities to address unmet stroke service needs. Interpretations: The findings resonate with and extend prior literature, suggesting a critical need for personalized and tailored stroke services to address persistent unmet needs. We call on relevant stakeholders, such as policymakers, providers, and researchers, to move these insights into action through comprehensive guidelines, practice standards and interventions to personalize and tailor CBSS. [ABSTRACT FROM AUTHOR]

Background: Patient experience when transitioning home from hospital is an important quality metric linked to improved patient outcomes. We evaluated the impact of a hospital-based care transition intervention, patient-oriented discharge summary (PODS), on patient experience across Ontario acute care hospitals. Methods: We used a repeated cross-sectional study design to compare yearly positive (top-box) responses to four questions centered on discharge communication from the Canadian Patient Experience Survey (2016–2020) among three hospital cohorts with various levels of PODS implementation. Generalized Estimating Equations using a binomial likelihood accounting for site level clustering was used to assess continuous linear time trends among cohorts and cohort differences during the post-implementation period. This research had oversight from a public advisory group of patient and caregiver partners from across the province. Results: 512,288 individual responses were included. Compared to non-implementation hospitals, hospitals with full implementation (>50% discharges) reported higher odds for having discussed the help needed when leaving hospital (OR = 1.18, 95% CI = 1.02–1.37) and having received information in writing about what symptoms to look out for (OR = 1.44, 95% = 1.17–1.78) post-implementation. The linear time trend was also significant when comparing hospitals with full versus no implementation for having received information in writing about what symptoms to look out for (OR = 1.05, 95% CI = 1.01–1.09). Interpretation: PODS implementation was associated with higher odds of positive patient experience, particularly for questions focused on discharge planning. Further efforts should center on discharge management, specifically: understanding of medications and what to do if worried once home. [ABSTRACT FROM AUTHOR]