Recommendations made by patients, caregivers, providers, and decision-makers to improve transitions in care for older adults with hip fracture: a qualitative study in Ontario, Canada.

BACKGROUND: Older adults frequently experience fall-related injuries, including hip fractures. Following a hip fracture, patients receive care across a number of settings and from multiple different providers. Transitions between providers and across settings have been noted as a vulnerable time, with potentially negative impacts. Currently, there is limited research on how to improve experiences with transitions in care following a hip fracture for older adults from the perspectives of those with lived experienced. The purpose of this study was to explore service recommendations made by patients, caregivers, healthcare providers, and decision-makers for improving transitions in care for older adults with hip fracture. METHODS: This descriptive qualitative study was part of a larger longitudinal qualitative multiple case study. Participants included older adults with hip fracture, caregivers supporting an individual with hip fracture, healthcare providers, and decision-makers. In-depth, semi-structured interviews were conducted with all participants, with patients and caregivers having the opportunity to participate in follow-up interviews as they transitioned out of hospital. All interviews were audio-recorded, transcribed verbatim, and analyzed thematically. RESULTS: A total of 47 participants took part in 65 interviews. We identified three main categories of recommendations: (1) hospital-based recommendations; (2) community-based recommendations; and (3) cross-sectoral based recommendations. Hospital-based recommendations focused on treating patients and families with respect, improving the consistency, frequency, and comprehensiveness of communication between hospital providers and between providers and families, and increasing staffing levels. Community-based recommendations included the early identification of at-risk individuals and providing preventative and educational programs. Cross-sectoral based recommendations were grounded in enhanced system navigation through communication and care navigators, particularly within primary and community care settings. CONCLUSIONS: Our findings highlighted the central role primary care can play in providing targeted, integrated services for older adults with hip fracture. The recommendations outlined have the potential to improve experiences with care transitions for older adults with hip fracture, and thus, addressing and acting on them should be a priority.

Factors Impacting Primary Care Engagement in a New Approach to Integrating Care in Ontario, Canada.

Introduction: In 2019, Ontario's Ministry of Health (the Ministry) introduced Ontario Health Teams (OHTs) to provide population-based integrated healthcare. Primary care was foundational to this approach. We sought to identify factors that impacted primary care engagement during OHT formation from different perspectives. Methods: Interviews with 111 participants (administrators n = 80; primary care providers n = 17; patient family advisors = 14) from 11 OHTs were conducted following a semi-structured guide. Interviews were transcribed, coded, and thematically analyzed. Results: Participants felt that primary care engagement was an ongoing, continuous cycle. Four themes were identified: 1) 'A low rules environment': limited direction from the Ministry (system-level), 2) 'They're at different starting points': impact of local context (initiative-level); 3) 'We want primary care to be actively involved': engagement efforts made by OHTs (initiative-level); 4) 'Waiting to hear a little bit more': primary care concerns about the OHT approach (sector-level). Thirteen factors impacting primary care engagement were identified across the four themes. Discussion and Conclusion: The 13 factors influencing primary care engagement were interconnected and operated at health system, integrated care initiative, and sector levels. Future research should focus on integrated care initiatives as they mature, to address potential gaps in the involvement of primary care physicians.

An exploration of attitudes and preferences towards medications among healthcare providers and persons with spinal cord injury/dysfunction: a qualitative comparison.

PURPOSE: To compare the attitudes and preferences of persons with spinal cord injury/dysfunction (SCI/D) and healthcare providers regarding prescription medications, over-the-counter medications, and natural health products (NHPs). MATERIALS AND METHODS: A qualitative study involving semi-structured interviews with healthcare providers (n = 32) and persons with SCI/D (n = 19) in Canada. Inductive descriptive and interpretive analyses were conducted using data display matrices and a constant comparative approach. RESULTS: Participants described differing perceptions of therapeutic benefits based on medication type, with shared attitudes about the therapeutic benefits of prescription medications and differing views about the effectiveness of NHPs. Despite the perceived effectiveness of prescription medications, persons with SCI/D preferred to avoid them due to concerns about side effects, safety, and stigma. Persons with SCI/D were often concerned about the long-term safety of prescription medications, whereas providers focused more on medication-related addictions. Participants discussed stigma relating to prescription medications, NHPs, and medicinal marijuana. CONCLUSION: Healthcare providers and persons with SCI/D described different attitudes about and preferences for pharmacotherapeutic products, contributing to challenges in optimizing medication management. Strategies to improve medication management include shared decision-making to incorporate patient preferences into care plans and explicit discussions about long-term medication safety. Further, steps are needed to combat the stigma associated with medication use.Implications for rehabilitationFollowing a person-centered approach to shared decision-making, prescribers should initiate explicit conversations about patient medication preferences, short and long-term prescription medication side effects, and alternative treatment options.Regarding prescription medication safety, persons with spinal cord injury/dysfunction focused on the long term impact of medications, while providers focused on medication-related addictions, highlighting a disconnect that should be discussed during initiation, continuation, or discontinuation of a medication.Providers should be mindful of the stigma associated with taking multiple prescription medications, including medicinal marijuana, as well as the stigma associated with over-the-counter medications and natural health products.Providers could benefit from education about spinal cord injury/dysfunction-specific prescription medications and could benefit from increased education about natural health products.

Exploring medication self-management in community-dwelling adults with chronic medication experience: A concept mapping study.

BACKGROUND: People who take medications often experience challenges including making decisions about risks versus benefits and integrating medication management with all aspects of life (e.g., social and work responsibilities). Existing medication self-management frameworks are primarily adherence-focused and lack integrating holistic perspectives. OBJECTIVE: To explore the priorities of people with chronic medication experience (i.e., take at least 1 medication daily for at least 3 months) and what they can contribute to the understanding of medication self-management. METHODS: Concept mapping is a participatory, mixed-methods approach with 3 stages: brainstorming, sorting/rating, and mapping. Group brainstorming discussions were held with participants who generated statements about what mattered to them regarding medications in their everyday lives. In sorting/rating, individual participants grouped statements into thematic piles and rated their importance and feasibility. During mapping, a subset of participants discussed and agreed on a visual map and named the statement clusters. Following mapping, the researchers analyzed rating results, stratified by participant characteristics (gender, age, duration of medication use, number of medications, and chronic conditions). RESULTS: Sixty-three participants generated 1044 statements during 8 brainstorming sessions, which the researchers synthesized into 94 statements. Fifty-four participants individually sorted and rated the statements. Most statements were rated highly on both importance and feasibility, regardless of participant characteristics. Eight participants attended the mapping session. The final map had 9 thematic clusters, which were named by participants as: 1) researching and becoming educated about medications; 2) social support; 3) effectiveness of medication; 4) self-ownership of medication; 5) ease of use; 6) convenience and accessibility; 7) information provided by healthcare provider; 8) personal interactions with healthcare provider; and 9) patient involvement and trust. CONCLUSIONS: Results enhance existing medication management frameworks by providing a more comprehensive perspective. Understanding medication self-management requires more research that incorporates and prioritizes the perspectives of individuals who manage their medications.

Understanding transitions in care for people with major lower limb amputations from inpatient rehabilitation to home: a descriptive qualitative study.

PURPOSE: To understand how people with major limb amputation experience the transition in care from inpatient rehabilitation to the community. METHOD: A qualitative study was conducted using semi-structured interviews. Individuals were eligible if they had undergone a major lower limb amputation and had been discharged from inpatient rehabilitation to the community within one to twelve months. Interviews explored participants' experiences and factors associated with the transition in care. The interviews were audio-recorded, transcribed, and thematically analyzed. RESULTS: Nine individuals with major lower limb amputation participated. Five themes were identified to describe the transition in care experience: (a) Preparedness: differing experiences during inpatient rehabilitation; (b) Challenges with everyday tasks: "everything has to be thought out"; (c) Importance of coping strategies; "gradually you accept it more and more" (d) Importance of support and feeling connected; "if I needed anything, they're right there" and (e) Not everyone has access to the same resources: "left to your own devices". CONCLUSIONS: The identified themes concurrently influenced the transition from inpatient rehabilitation to the community. Common challenges during the initial transition were identified. Areas of improvement within inpatient rehabilitation included individualized care, discussions surrounding expectations, and better access to ongoing community support.Implication for rehabilitationTransition in care are difficult and vulnerable times for people with major lower limb amputation, especially when transitioning home following inpatient rehabilitation.Rehabilitation should prepare individuals for completing meaningful tasks in the home and community.Access to ongoing support in the community in the form of practical and emotional support can ease the challenges of transitioning home.

A qualitative study exploring the lived experiences of deconditioning in hospital in Ontario, Canada.

BACKGROUND: Older adults, especially those with physical and social complexities are at risk of hospital-associated deconditioning. Hospital-associated deconditioning is linked to increased length of stay in hospital, stress, and readmission rates. To date, there is a paucity of research on the experiences and implications of deconditioning in hospital from different perspectives. Therefore, the objectives of this exploratory, descriptive qualitative study were to explore hospital-associated deconditioning from the views of different stakeholders and to develop an understanding of deconditioning from physical, social, and cognitive perspectives. METHODS: Between August 2018 and July 2019, in-depth, semi-structured interviews were conducted with patients 50 years or older, who had a hip fracture or delay in discharge, as well as caregivers, providers, and decision-makers who provided support or impacted care processes for these patients. Participants were recruited from one urban and one rural health region located in Ontario, Canada. All interviews were audio-recorded, transcribed, and analyzed using a constant comparison approach. RESULTS: A total of 80 individuals participated in this study. Participants described insufficient activities in hospital leading to boredom and mental and physical deconditioning. Patients were frustrated with experiencing deconditioning and their decline in function seemed to impact their sense of self and identity. Deconditioning had substantive impacts on patients' ability to leave hospital to their next point of care. Providers and decision-makers understood the potential for deconditioning but felt constrained by factors beyond their control. Factors that appeared to impact deconditioning included the hospital's built environment and social capital resources (e.g., family, roommates, volunteers, staff). CONCLUSIONS: Participants described a substantial lack of physical, cognitive, and social activities, which led to deconditioning. Recommendations to address deconditioning include: (1) measuring physical/psychological function and well-being throughout hospitalization; (2) redesigning hospital environments (e.g., create social spaces); and (3) increasing access to rehabilitation during acute hospital stays, while patients wait for the next point-of-care.

Caregiving for older adults with hip fractures: Exploring the perspectives of caregivers, providers and decision-makers in Ontario, Canada.

INTRODUCTION: Caregivers play an important role in providing physical, emotional and social support to individuals with hip fracture. This study sought to explore perceptions of caregiving for older adults with hip fractures by comparing experiences of caregivers, providers and decision-makers. METHODS: Semi-structured interviews were conducted both in-person and by telephone with caregivers, providers and decision-makers (n=32) from one rural and one urban hospital selected from two health regions in Ontario, Canada. Interviews were audio-recorded and transcribed verbatim. The data were coded descriptively and interpretively, and compared within and across participants types. RESULTS: Three main themes reflected tensions between caregivers and providers/decision-makers. Firstly, differing expectations of caregiver roles were identified. Several caregivers wanted more participation in the decision-making process but often felt excluded, while others expressed feeling stressed due to the expectations placed on them. Conversely, providers and decision-makers often described caregivers needing to strike a balance between providing supportive care while avoiding becoming too involved. Secondly, different expectations of what the healthcare system and providers could provide, with tensions particularly around timing of discharge were noted. Finally, there were differing perceptions of information needs. Providers spoke about the importance of providing education to caregivers and perceived themselves to be providing appropriate education. However, caregivers often described poor communication and not having a clear understanding of next steps and the care plan. CONCLUSION: Managing and tailoring expectations, improving communication (e.g., content, timing) and the consistency of information shared with caregivers from different providers could facilitate more positive caregiving experiences and interactions.

"Clearly they are in the circle of care, but . . .": A qualitative study exploring perceptions of personal health information sharing with community pharmacists in an integrated care model.

BACKGROUND: Ontario's Health Links approach to care is an integrated care model designed to optimize care for patients with complex needs. Currently, community pharmacists have no formalized role. This study aimed to explore stakeholders' perceptions about privacy and its impact on community pharmacists' involvement with integrated care models. METHODS: A qualitative study using semistructured telephone-based interviews was conducted. Participants worked in Ontario as pharmacists, providers in Health Links or team-based models or decision-makers in Health Links or health regions. Thematic analysis followed the Qualitative Analysis Guide of Leuven. RESULTS: Twenty-two participants were interviewed, and all but one commented on privacy or information sharing in integrating community pharmacists with integrated care models. The 4 themes identified were as follows: 1) what does the circle of care look like? 2) value of sharing information, 3) uncertainty of what information to share and 4) perceptions on how to share information. INTERPRETATION: The concerns surrounding privacy of personal health information and who is included in the circle of care represented an important barrier for integration. Enablers to mitigate privacy concerns included relationship building between community pharmacists, patients and other health care professionals and mutual access to information-sharing platforms such as electronic health records. CONCLUSION: Providers' and decision-makers' perceptions about community pharmacists and privacy affect information sharing and are incongruent with Ontario's Personal Health Information Protection Act. Education is needed for health care professionals on legislation, especially as health systems move towards integrated care models to improve care. Can Pharm J (Ott) 2020;153:xx-xx.

Understanding perceptions of involving community pharmacy within an integrated care model: a qualitative study.

BACKGROUND: Over the past several years, there has been more emphasis on integration within health care. Community pharmacy is often under-represented within integrated care models. This study explored stakeholder perceptions and enablers of including community pharmacy within an integrated care model. METHODS: A qualitative study was undertaken. Participants were recruited through professional networks and social media, as well as snowball recruitment from other participants. They included community pharmacists, clinicians, and decision-makers working in Ontario, Canada. Data were collected using telephone interviews completed with a semi-structured interview guide based on Consolidated Framework for Implementation Research from June to September 2018. Data were analysed inductively and deductively following the Qualitative Analysis Guide of Leuven. An additional theoretical framework (Rainbow Model of Integrated Care) was used to categorize enablers. RESULTS: Twenty-two participants were interviewed including nine pharmacists, seven clinicians, and six decision-makers. Three key themes were identified: 1) Positive value of including pharmacy in integrated care models; 2) One model does not fit all; and 3) Conflict of interest. Four key enablers were identified reflecting functional and normative factors: functional - 1) remuneration, 2) technology; normative - 3) engagement, and 4) relationships. While both functional and normative factors were discussed, the latter seemed to be more important to facilitate the inclusion of community pharmacy. Many participants characterized community pharmacists' lack of skills or confidence to provide patient care. CONCLUSIONS: This study confirms previously known views about concerns with community pharmacy's conflict of interest. However, discordant perceptions of conflict of interest and negative perceptions about capabilities of community pharmacy need to be addressed for successful integration. Normative enablers, such as culture, are likely important for organizational integration and require additional inquiry.

Exploring the perspectives on medication self-management among persons with spinal cord injury/dysfunction and providers.

RATIONALE: Spinal cord injury/dysfunction (SCI/D) is an exemplar condition with a high prevalence of secondary complications, chronic conditions and use of multiple medications (polypharmacy). Optimizing medication self-management is important for persons with SCI/D to improve outcomes; however, there is a lack of research on how healthcare/service providers and persons with SCI/D experience medication self-management. OBJECTIVE: To explore attitudes and experiences of medication self-management from the perspectives of persons with SCI/D and providers, and to explore the extent to which the Taxonomy of Everyday Self-management Strategies (TEDSS) framework captured participants' experiences with medication self-management. METHODS: In-depth, semi-structured interviews were conducted by telephone until data saturation was reached. Interviews were transcribed verbatim and analyzed using constant comparative approaches. The TEDSS framework was adapted and applied deductively. RESULTS: Fifty-one individuals participated in this study, 32 providers and 19 persons with SCI/D. Disease controlling strategies was the domain discussed in most detail by all participants. In this domain, participants discussed managing medications and treatments, monitoring/managing side effects, and controlling complications. Process strategies (problem-solving, decision-making) and resource strategies (seeking support) were the next most frequently discussed domains. Among all participant groups, there was a lack of detailed discussion of social interactions, health behaviour, and internal strategies. Medication self-management support was not extensively discussed by any group. CONCLUSION: This study highlighted the complex nature of medication self-management. While persons with SCI/D and providers discussed similar components of the TEDSS framework, providers had minimal reflections on the impact of medication self-management on everyday life. This study identified the need for explicit discussions between providers and persons with SCI/D, involving all components of self-management and self-management support in order to improve medication self-management.

"The strategies are the same, the problems may be different": a qualitative study exploring the experiences of healthcare and service providers with medication therapy management for individuals with spinal cord injury/dysfunction.

BACKGROUND: Persons with spinal cord injury/dysfunction (SCI/D) often take multiple medications to treat their secondary complications and chronic conditions (multimorbidity). Multiple healthcare and service providers are often involved in care, which can result in increased risk of fragmentation of care. Optimal medication therapy management (MTM) is essential to ensure therapeutic benefit from medication regimens. However, little is known about the experiences of providers in supporting persons with SCI/D with MTM. METHODS: Telephone interviews were conducted to explore healthcare and service providers' experiences with MTM for persons with SCI/D. Participants were recruited through clinical organizations and researchers' personal contacts. Participants were purposefully selected for diversity in profession and were required to be English speaking and to have provided care to at least one person with SCI/D. The qualitative interviews followed a semi-structured interview guide. Data display matrices were used in a constant comparative process for descriptive and interpretive analysis. RESULTS: Thirty-two interviews were conducted from April to December 2018. Each profession had distinct views on their roles in facilitating MTM for persons with SCI/D, which aligned with their respective scopes of practice. Shared provider tasks included tailoring medications, providing education, and exploring medication alternatives. Most participants felt that the care they provided for persons with SCI/D was similar to the care that they provided to other patients, with some differences relating to the physical limitations and medical complexity associated with SCI/D. Five factors were identified that impacted participants' abilities to provide MTM for persons with SCI/D: patient self-management skills, provider knowledge and confidence, provider-patient relationships, interprofessional collaboration, and provider funding models including the use of technology-supported consultations. CONCLUSION: While participants described commonalities in the barriers and enablers associated with providing MTM to persons with SCI/D and other populations, there were unique considerations identified. These SCI/D-specific considerations resulted in recommendations for improvements in MTM for this population. Future research should include perspectives from persons with SCI/D.

Exploring transitions in care from pulmonary rehabilitation to home for persons with chronic obstructive pulmonary disease: A descriptive qualitative study.

BACKGROUND: Individuals with chronic obstructive pulmonary disease (COPD) often experience high health-care utilization following pulmonary rehabilitation, suggesting suboptimal transitions to home. OBJECTIVE: To understand the experiences of persons with COPD and health-care professionals regarding transitions from pulmonary rehabilitation to home, including factors impacting these transitions. DESIGN: A descriptive qualitative study. SETTING AND PARTICIPANTS: Health-care professionals working at, and persons with COPD who attended, an inpatient or outpatient pulmonary rehabilitation programme at one large, urban health-care centre. The centre is located in Ontario, Canada. MAIN VARIABLE STUDIED: Experiences of participants with care transitions between pulmonary rehabilitation and home. Semi-structured interviews were audio-recorded, transcribed verbatim, and thematically analysed. RESULTS: Ten patients and eight health-care professionals participated. Four main themes were identified around the overall experiences with pulmonary rehabilitation and transitions to home: (a) pulmonary rehabilitation as a safe environment; (b) pulmonary rehabilitation as a highly structured environment; (c) contrasting perceptions of the role of pulmonary rehabilitation; and (d) dependency on pulmonary rehabilitation programmes. Persons with COPD and health-care professionals identified three key factors that influenced this transition: (a) patients' social support, (b) application of self-management strategies prior to discharge, and (c) patients' physical and mental health. CONCLUSION: Participants agreed that some patients with COPD experienced suboptimal transitions from pulmonary rehabilitation to home that were characterized by suboptimal self-management. Further research is needed to develop and evaluate interventions to improve transitions. Such interventions should include strategies to elicit long-term behaviour change to assist patients when they return into the community.

Patient and caregiver experiences on care transitions for adults with a hip fracture: a scoping review.

Purpose: The purpose of this scoping review was to explore the literature on experiences and perspectives of patients with hip fractures and their caregivers during transitions in care.Methods: Seven databases were searched for studies published between 1 January 2000 and 3 July 2018. Grey literature was also searched.Results: Eleven articles met the inclusion criteria. The scoping review found that patients and caregivers encounter several challenges during care transitions including the following: lack of information sharing, role confusion and disorganized discharge planning. Common suggestions reported in the literature for improving care transitions were: increasing written communication, offering a patient representative role, using technology for knowledge dissemination and increasing geriatrician involvement.Conclusions: The results of this scoping review provide a useful foundation from which to build strategies to address challenges such as lack of information sharing, role confusion and disorganized discharge planning experienced by patients and caregivers during care transitions. Further research needs to explore the development of strategies to promote patient-centered care especially during discharge from an acute care facility.Implications for rehabilitationEncourage health care providers to collaborate with patients with hip fracture and caregivers on decision-making about rehabilitation and recovery goals, discharge planning and safe patient transfer.Assess the needs of patients with hip fracture and caregivers before, during and after a care transition to deliver patient and family-centered care across multiple care settings.Provide patients with hip fracture and caregivers standardized information-exchange tools to increase timely, accurate exchange of information during care transitions.Encourage formal discussions about roles and responsibilities in the transitions in care process among patients with hip fracture, caregivers and health care providers.

Factors related to screening for problem gambling among healthcare and social service providers in Ontario, Canada: A concept mapping study.

Problem gambling is a major public health concern, especially among persons who are precariously housed, living in poverty or have complex health and social needs. Problem gambling has been connected to negative health and social outcomes; however, current healthcare services rarely screen for problem gambling. With support from community partners, the purpose of this study was to understand factors related to screening for problem gambling. Concept mapping, a mixed-method approach driven by participatory involvement, was conducted with healthcare and social service providers from Ontario, Canada in 2019. Three phases were conducted with participants either in-person or online: Brainstorming, Sorting/Rating and Mapping. Brainstorming sessions were conducted to generate statements, guided by the focal prompt: "If you were directed to routinely screen for problem gambling, what would help you do this in your daily practice?" Participants sorted statements into categories and rated them based on their importance and feasibility. A mapping session was conducted with participants to co-create visual representations of the data. Thirty participants took part in the in-person or online concept mapping sessions. During the brainstorming sessions, participants generated 213 statements, which the research team condensed into a final list of 45 statements. Participants decided that the five-cluster map best represented these 45 statements and labelled the five clusters: (a) top level (macro), (b) screening tool, (c) staff skills and training, (d) screening, and (e) team resources and support. Staff skills and training was rated as the most important and the most realistic cluster to implement, while screening was rated relatively as the least important when compared to the other clusters. Team resources and support was rated relatively as the least realistic cluster. By identifying the needs of healthcare and social service providers, this study co-developed actionable suggestions that will assist providers in routinely screening for problem gambling.

Medication adherence for persons with spinal cord injury and dysfunction from the perspectives of healthcare providers: A qualitative study.

Context: People with spinal cord injury and dysfunction (SCI/D) often take multiple medications (i.e. polypharmacy) to manage secondary health complications and multiple chronic conditions. Numerous healthcare providers are often involved in clinical care, increasing the risk of fragmented care, problematic polypharmacy, and conflicting health advice. These providers can play a crucial role in assisting patients with medication self-management to improve medication adherence. Design: A qualitative study involving telephone interviews, following a semi-structured guide that explored healthcare providers' conceptualization of factors impacting medication adherence for persons with SCI/D. The interviews were transcribed and analyzed descriptively and interpretively using a constant comparative process with the assistance of data display matrices. Analysis was guided by an ecological model of medication adherence. Setting and participants: Thirty-two healthcare providers from Canada, with varying clinical expertise. Intervention: Not Applicable. Outcome measures: Not Applicable. Results: Providers identified several factors that impact medication adherence for persons with SCI/D, which were grouped into micro (medication and patient-related), meso- (provider-related) and macro- (health system-related) factors. Medication-related factors included side effects, effectiveness, safety, and regimen complexity. Patient-specific factors included medication knowledge, preferences/expectations/goals, severity and type of injury, cognitive function/mental health, time since injury, and caregiver support. Provider-related factors included knowledge/confidence and trust. Health system-related factors included access to healthcare and access to medications. While providers were able to identify several factors influencing medication adherence, micro-level factors were the most frequently discussed. Conclusion: Findings from this study indicate that strategies to optimize medication adherence for persons with SCI/D should be multi-faceted.

Patient and caregiver experience with delayed discharge from a hospital setting: A scoping review.

BACKGROUND: Delayed hospital discharge occurs when patients are medically cleared but remain hospitalized because a suitable care setting is not available. Delayed discharge typically results in reduced levels of treatment, placing patients at risk of functional decline, falls and hospital-related adverse events. Caregivers often take on an active role in hospital to mitigate these risks. OBJECTIVE: This scoping review aimed to summarize the literature on patient and caregiver experiences with delayed hospital discharge. SEARCH STRATEGY: Seven electronic databases and grey literature were searched using keywords including alternate level of care, delayed discharge, patients, caregivers and experiences. INCLUSION CRITERIA: Included articles met the following criteria: (a) patient or caregiver population 18 years or older; (b) delayed discharge from a hospital setting; (c) included experiences with delayed discharge; (d) peer-reviewed or grey literature; and (e) published between 1 January 1998 and 16 July 2018. DATA EXTRACTION: Data were extracted from the seven included articles using Microsoft Excel 2016 to facilitate a thorough analysis and comparison. MAIN RESULTS: Study themes were grouped into five elements of the delayed discharge experience: (1) overall uncertainty; (2) impact of hospital staff and physical environment; (3) mental and physical deterioration; (4) lack of engagement in decision making and need for advocacy; and (5) initial disbelief sometimes followed by reluctant acceptance. CONCLUSION: This review provides a foundation to guide future research, policies and practices to improve patient and caregiver experiences with delayed hospital discharge, including enhanced communication with patients and families and programmes to reduce deconditioning.