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

Abstract 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.


| BACKG ROU N D
A common quality and safety concern in health systems across the developed world is patients' inability to access needed services in a timely fashion. Delayed hospital discharge (also known as bed delay and, in Canada, alternate level of care) is one such quality concern, which occurs when a patient is medically cleared for discharge but remains hospitalized because a suitable care setting is not available. 1,2 In hospital, such patients often receive a significantly reduced level of treatment, rehabilitation and activation, placing them at risk of functional decline, falls and hospitalrelated adverse events such as infectious disease and medication errors. [3][4][5] Over the past several years, much attention has been paid to calculating the number of patients experiencing delayed hospital discharges and to understanding these patients' clinical characteristics and care destinations. [6][7][8] Empirical studies have focused on identifying the sources, predictors and risk factors associated with delayed discharge including factors at the patient level, family and caregiver level, and organization and system levels. 6,[9][10][11][12][13][14] Briefly, patients experiencing delayed hospital discharge generally have complex health needs including physical and mental impairment. 6,9 Delayed hospital discharge has been associated with decreased abilities to participate in activities of daily living, frailty, increased age, high comorbidity (eg obesity and stroke), cognitive impairment, dependency and behavioural challenges. [9][10][11][12]14,15 One review has been published that included a brief summary of experiences of patients with delayed hospital discharge; however, the main focus of the review was on the impacts of delayed hospital discharge on patient health outcomes, evaluating associated costs and qualitatively assessing the impacts on patients, providers and hospitals. 15 To address quality and safety concerns, health-care delivery in the developed world is striving to become more patient-and family-centred by capturing and addressing the needs and priorities of people and their families. 16 Taking a person-centred approach to care delivery is particularly important during care transitions when patients and caregivers are often at their most vulnerable. 16,17 Patient-centred approaches are thought to improve patient health outcomes and experiences within the health-care system. 16 Unpaid caregivers, such as family members or friends, often take on an active caregiver role in hospital to mitigate the frequent reduction in clinical care. 18,19 Better understanding of the experiences of patients and caregivers could contribute to patientand family-centred approaches and strategies to address delayed hospital discharges.
The purpose of this scoping review was to summarize the scope of literature on the reported experiences of both patients and caregivers with delayed discharge from a hospital setting. Specifically, this scoping review focused on describing patient and caregiver perspectives towards delayed hospital discharge and the context surrounding delayed discharges (eg planned destinations, patient/ caregiver characteristics), as well as identifying gaps and methodological approaches conducted to study this topic.

| ME THODS
A review protocol was created and amended in consultation with a librarian prior to the review commencing and is available from the researchers upon request. The protocol was not published or registered; however, the scoping review followed Levac's methodological framework and met the PRISMA-ScR guidelines set out by Tricco and colleagues (Data S1). 20 Articles from each of the seven databases were imported into the reference management software EndNote X8™. Duplicate articles were removed following Bramer's deduplication method by using custom import and export extensions to compare article citation information by changing display fields. 22 The titles and abstracts of the 4725 articles were screened for the following inclusion criteria: (a) patient or caregiver population 18 years or older; (b) delayed discharge (ie medically cleared with no suitable next destination available) 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. Articles were excluded if they (a) were a book, book chapter, editorial, opinion piece, study protocol, case law or trial report, abstracts with no full-text articles; (b) focused only on length of stay, impacts of delayed discharge on the hospital system or patient health outcomes (excluding experience); or (c) only described indicators/determinants of delayed discharge. Scoping and systematic reviews were also excluded; however, their reference lists were manually reviewed for relevant articles.
Titles and abstracts for the first 100 articles were screened independently by two individuals (AE and JL) using a Microsoft Excel

| RE SULTS
The initial search resulted in 7125 articles and 40 additional records. After deduplication, 4754 articles remained for title and abstract screening (see Figure 1). Of the 59 full-text articles that were reviewed, 52 were excluded. The remaining seven articles were included in this scoping review. The characteristics of the included articles are presented in Table 1. Of the seven included articles, five had qualitative study designs and two were mixed-methods studies. 18,19,[23][24][25][26][27] Of the qualitative studies, the majority employed interviews (n = 4) 18,19,24,26 and one employed ethnography. 23 Of the mixed-methods studies, one employed a discussion based intervention with observational data collection 25 and the other employed a combination of qualitative interviews, observations and a quantitative analysis of regional inpatient hospital data. 27 The included studies were predominantly conducted in North America with four from Canada 18,19,24,27 and two from the United States. 25,26 The remaining study was conducted in the United Kingdom. 23 All of the articles were published in the last 13 years.
Most articles (n = 5) provided a definition of delayed discharge or alternate level of care. 18,19,23,24,26 Of the five studies that provided a definition for delayed discharge, four described patients as being either medically stable and cleared for discharge or no longer needing the intensity of service provided in their current setting. 18,19,24,26 The remaining article described delayed discharge as a situation 'when a patient is inappropriately occupying a hospital bed'. 23 Three of the five definitions attributed the delayed discharge to a lack of appropriate destination facilities or beds in such facilities. 19,23,26 The median sample size of the qualitative portions of the seven included articles was 14 participants with a range of seven to 23 participants. One ethnographic study had a total sample size of 14 patients from which the study themes were derived; however, the article focused on case reports for three patients. Because the themes were derived based on data collected from all participants, the sample size used in the above calculation was 14.
Study participants were generally patients, with four studies including only patients, 23,[25][26][27] two studies including patients and caregivers 18,24 and one study including only caregivers. 19 The majority of articles included both male and female participants (n = 5). One article included only male participants 25 and the ethnographic study 23 contained three detailed case reports of three female participants.
In the four articles that reported the age of patient participants, all were above 80 years old. 18,24,26,27 Four studies used a minimum age as inclusion criteria for selecting patient participants. 18,23,26,27 Of the three articles that included caregiver participants, only one reported the age of the caregiver, 18 which ranged from 48 to 59 years old. 23 Patient and caregiver marital statuses were both only reported in one article. 18 Patient and caregiver ethnicity, income level and education level were not reported in any of the included articles.
In regard to health conditions of patients, four articles reported the primary condition or event resulting in patient hospitalization.
Of the seven included articles, three reported the living arrangements of the patient prior to hospitalization. 19,23,24 Two articles described living arrangements as either living with family or a carer or living alone. 19,24 The third article was the ethnography, which described the patients as either living in a house or in community housing. 23 The majority of the articles (n = 6) reported some information • Full-service hospitals (2) • Not reported (9) • 72-d mean (9) • Nursing home • Patients awaiting placement to another setting described the hospital environment as bleak Abbreviations: CCC, complex continuing care facility; LTC, long-term care; NHS, National Health Services.
on the type of hospital in which participants were waiting; however, there was little consistency in the descriptions provided. All but one of the included articles described the planned destination for at least some of the patient following hospitalization. 18,[23][24][25][26][27] These destinations were most frequently assisted-living, long-term care or nursing homes. Most studies (n = 5) reported the length of patients' delayed discharge, 18,19,23,25,26 which ranged from 11 days to over 6 years. One study explicitly reported the reason for delayed patient discharge stating that the patients did not wish to be discharged. 25 Table 2 provides a summary of the delayed hospital discharges characteristics.

| Key themes of included studies
Authors of the included studies presented qualitative themes in six of the seven included articles. For the remaining article, 25 our research team synthesized themes from the reported qualitative results. Study themes are presented in Table 3. Study themes from the included articles were grouped thematically into five overarching elements of the delayed discharge experience: (a) overall uncertainty; (b) impact of hospital staff and physical environment; (c) mental and physical deterioration; (d) lack of engagement in decision making and the need for advocacy; and (e) initial disbelief sometimes followed by reluctant acceptance of the situation (see Figure 2). Below is a description of each element of the delayed discharge experience.

| Overall uncertainty
Three qualitative studies described participants as uncertain about different aspects of their illness and treatment, hospital processes and their journey through the health-care system. 18 would be placed and how the placement would take place.

| Impact of hospital staff and physical environment
Three included articles reported that the hospital staff and/or the physical hospital environment impacted the overall patient and caregiver experience during delayed discharge. 19,23,27 For example, an ethnographic study conducted by Kydd aimed to describe the lives of patients (n = 14) in the United Kingdom that experienced delayed discharge. 23 The author of this study found that patients' moods were directly affected by the attitudes and behaviours of hospital staff. Hospital staff were observed to exercise power over patients by selectively enforcing institutional rules for some patients, but not others. Patients were aware that rules were applied selectively and that 'preferred' patients were favoured over others, resulting in poor care experiences (ie feeling 'angry, neglected or uncared for'). 23 The physical environment of the hospital was also described as an inappropriate environment for delayed discharge patients. 19,27 The caregivers interviewed by Kuluski and colleagues expressed frustration at the lack of care, attention and time given to patients who were experiencing delays. 19 Similarly, patients interviewed in the qualitative phase of Wilson and colleagues' study described patients spending much of their day waiting, being socially isolated with few visitors with little contact with other hospital patients. 27 Much of this isolation was described to be a result of the physical hospital environment and a lack of programmes to mentally and physically engage patients.

| Mental and physical deterioration
Four included articles described patients experiencing mental and physical deterioration during their delayed hospital discharge, often as a result of the lack of social and physical programmes and services in hospital. 18,19,26,27 Patients in two of the included studies expressed concerns about the effects of prolonged hospitalization on their overall health and a desire for more meaningful activities. 18,26 Specifically, patients voiced their concerns about reductions in mobility due to decreased activation and physical activity. 18,26 In Wilson and colleagues' study, patients described deterioration of physical strength due to decreased activation and researchers observed patients to have limited social interactions. 27 In Kuluski and colleagues' study, caregivers echoed this concern and emphasized that patients' non-medical needs (eg social) were also important to ensure patients' dignity and independence. 19

| Lack of engagement and control in decisionmaking processes and a need for advocacy
A lack of patient and caregiver involvement in the decision-making process about transfers to other facilities was common among the included studies (n = 5). 19,[24][25][26][27] For example, Kuluski and colleagues found that a lack of engagement in the decision-making process resulted in caregivers feeling that they had to advocate on behalf of the patient to ensure that his/her needs were being met in hospital and that patients were placed in an appropriate facility. 19 Moreover, patients in Swinkels and Mitchell's study assessing patient experiences with delayed discharge from hospitals in the United States described feeling disempowered during the discharge planning process and felt they had little control over their situation, including how long the delay would take and decisions about their discharge destination. 26 Patients in this study felt that the decision to transfer to nursing or residential homes was made by others and was associated with their deteriorating health and loss of independence.

| Initial disbelief sometimes followed by reluctant acceptance of the situation
Five articles reported themes related to an initial disbelief about the patients' functional decline that resulted in the initial hospitalization and the delayed discharge situation. 18,[24][25][26][27] In two of these articles, this initial disbelief was followed by resignation or acceptance of the new circumstances. 25,27 In a Canadian study, McCloskey and colleagues interviewed patients (n = 16) and caregivers (n = 4) about their experiences with delayed hospital discharge and found that participants seemed to perceive the patients' situation pre-hospitalization as 'normal' even though many patients experienced safety issues, social isolation and dependency on others (eg friends, family, support workers). Some patients expressed feeling a sense of guilt over occupying a hospital bed while awaiting placement in a long-term care home. Similarly, patients in three studies were described as either struggling to accept their situation or unaware of their decline in physical health and functional ability. 18,26,27 Patrick and colleagues applied a mixedmethods approach to assess an intervention that aimed at facilitating discharge of psychiatric patients (n = 7) who were hesitant to leave hospital in the United States. 25 The intervention involved facilitated group sessions in which patients discussed their experiences in hospital and thoughts or goals of leaving the hospital.
Researchers found that patients were initially quiet in the sessions; however, over time, patients generally became more engaged and accepting of their future discharge from hospital. Ultimately, five patients were discharged following the intervention.

| Author recommendations
The authors of all of the included articles provided recommendations on how patients and caregivers could be better supported during delayed hospital discharges (Table 4). Recommendations included improvements at the interpersonal level, facility level and system level.
Interpersonal-level improvements included facilitating accurate and timely information sharing, 18

| D ISCUSS I ON
A delayed hospital discharge is a critical care quality issue experienced by hospitals globally and much can be learned from the experiences of patients and their families on how to address the issue. Our scoping review found that few studies have captured patient and caregiver experiences on delayed discharge-particularly the caregiver experience. For example, during our search, only one systematic review was found that included patient or caregiver experiences with delayed hospital discharge. This review was conducted by Rojas-Garcia and colleagues on the experiences of patients, health-care providers and hospitals. They focused primarily on the impacts of delayed hospital discharge on patient health outcomes, evaluated associated costs and qualitatively assessed impacts on patients, providers and organizations. 15 Their review included five studies on patient experience with delayed hospital discharge and provided a high-level overview of the impact on patients: emotionally, patients felt worried and anxious about the delays, experiencing boredom; in regard to discharge planning, patients felt disengaged; and the lack of privacy and noise in hospital led patients to believe it was a poor environment for prolonged stays. 15 While their high-level summary includes some of our findings on patient experiences, their review did not include any studies on caregiver experiences.
The gap in research exploring caregiver experiences is critical to address, as patients with a delayed discharge are disproportionately impacted by cognitive impairments 4 and may not be able to share their experiences. The seven studies that were captured in our scoping review point to gaps in two core areas in experiences with delayed discharge: (a) relational issues including communication and decision making and (b) lack of programmatic support during the delayed discharge period.

| Relational issues
Relational issues are those relating to aspects of relationships (particularly, interactions between patients, caregivers and providers).
The delayed hospital discharge period is a time of heightened vulnerability for patients and their caregivers; they are confused about what is currently happening to them, as well as what will happen next (including when the transition to the next care setting will take place). 18,19,23 Open and ongoing dialogue with hospital staff is rare, and patient and caregiver feelings range from frustration to guilt (eg about occupying a bed). 19,24 Patients and caregivers want to be included in decision making but feel excluded from this process. 19,27 Feelings of powerlessness are common. 23,24,26 The moods and lack of engagement of hospital staff also have an impact on the experiences of patients. 18 23 The effects of staff behaviour and attitudes upon the patients Patients' moods were influenced more by staff behaviours and attitudes than it was by the overall length of stay The patients' experience Patients were generally anxious about moving, were unaware of their diagnoses, avoided friendships with other patients (because they all knew they would be moving eventually) The environment and care Staff used institutional rules to exercise power over patients, often favouring certain patients over others. Patients were aware that rules were used as a form of power and knew that some patients were favoured Boredom was the biggest complaint by patients, followed by having little choice in their future unless they had caregivers to advocate on their behalf McCloskey et al, There are very few programmes in place for patients that are awaiting placement (eg community events, group meals or bus trips) Subtheme (2) Physical and mental stagnation: A few patients described that their physical strength had deteriorated due to limited activities and being mostly bedbound. The interviewers observed that participants were not engaged in conversation and seemed to repeat themselves frequently a Themes derived by scoping review authors based on the reported qualitative results in the article.

TA B L E 3 (Continued)
F I G U R E 2 Elements of the delayed discharge experience

| Limitations
There are a few limitations that should be noted. Firstly, it is possible that this scoping review missed relevant articles, as delay in discharge has several definitions, and 80% of full-text articles were reviewed for inclusion by one independent reviewer. In order to minimize the possibility of missed articles, with the guidance of a senior librarian, our search strategy was adapted for a variety of databases and included all keywords and Mesh headings relating to delay in discharge and patient/caregiver experiences. Additionally, the reference lists of the included articles were manually searched for relevant articles. Secondly, a critical appraisal of the sources of evidence was not undertaken; however, this approach aligns with published method guidelines for scoping reviews. 21,28

| Future research
Our studies included mostly the patient perspective and that of older adults. Participant demographics (eg age, sex, ethnicity, income levels, educational levels, marital status, employment status, comorbidities) were generally poorly reported and should be captured more fully in future work so that differences in experience and needs by culture and language, social location, sex and gender can be better understood. Further, information about the types of hospitals and hospital units should be reported. Future research should explore, build on and test strategies to address the key concerns articulated in this paper, including engagement strategies, and continued services to reduce isolation and physical deconditioning. Importantly, to capture a fulsome understanding of the delayed discharge experience, experiences and barriers from the provider, manager and decision-maker perspectives are also required in order to move towards implementable strategies to address delayed discharge challenges.

| CON CLUS ION
This review provides an important 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.