Factors affecting residents transition from long term care facilities to the community: a scoping review

As populations continue to age across industrialized and emergent nations, the demand for more complex care is increasing. The growing number of frail older adults and vulnerable persons with disabilities necessitate a multidisciplinary response from across the care continuum. Symptom presentation is often ambiguous, threats to health multi-factorial, and trajectories of change highly variable with outcomes of care uncertain [1]. Consequently, the pressure on policy makers to respond to the care needs of vulnerable populations is growing [2, 3].

Older adults report better quality of life (QOL) when they are able to live and receive support in their preferred location of care [4]. Supporting persons to receive care supports matched to meet their own needs and provided in their chosen location may promote the person’s sense of control, empowerment, and improve QOL [5]. The majority of persons wish to remain in their own homes and have their needs supported in the community through a combination of formal and informal supports [6]. However, the resources and supports necessary to safely address increased levels of health complexity may not always be available in the community. For these persons, whose needs cannot always be met by available formal and informal supports, long-term care facilities (LTCFs) provide a necessary and appropriate care service.

Various terminologies are used to describe LTCFs including nursing homes, skilled nursing care facilities, personal care homes, residential care facilities, and long-term care homes. This terminology varies both within and across countries. For the purpose of this paper, the term LTCFs will be used and generally refers to care institutions that “serve diverse populations who need access to 24-hour nursing care, personal care and other therapeutic and support services” [7] that are not provided through home care programs, in retirement homes, in assisted living facilities, in the persons own home or in a shared private home. Generally, most LTCFs aim to provide a combination of medical, nursing, and social care in a residential care setting.

In Canada, the process to enter a LTCF differs across provincial and regional jurisdictions, but is primarily based on the complexity of clinical health needs of the person and level of dependency in addressing these needs. LTCFs support persons whose needs require more complex care than can be addressed in the community. Although persons who require more intensive levels of care exhibit complex needs and high dependency, they also may prefer to live as normal and unconstrained as possible [8, 9]. In this way, LTCFs are expected to provide resources to support the residents’ autonomy so they may be as active as they can and live their lives the way they want [10]. While the majority of persons exhibiting increased health complexity are older adults, advanced age (e.g. aged over 65 years) is not a requirement for eligibility to LTCFs in Canada.

While the majority of people wish to remain in their homes and be supported to live and die in the community [6, 11, 12], LTCFs in Canada are increasingly becoming places where older adults reside until death. Yet, not all older adults experience a continuous trajectory of decline in abilities following entry to LTCFs [13, 14]. Following entry to a LTCF some residents experience improvements in personal abilities and increased independence, becoming able to return home or transition to the community [15]. In this case, discharge planning involving multiple stakeholders is warranted [15]. In the United States (US), the duration of stay in a LTCF may be characterized as short and long-term stays [16]. Short-stay residents, who enter due to an acute episode often receive enhanced rehabilitation and care with an expected goal of transition to the community [16], account for more than 1 million discharges from LTCFs to community every year in the US [15, 17], a trend that has been reported over multiple decades. In contrast to the large number of discharges from LTCFs reported in the US, transition from LTCFs to the community in Canada is rare. A Canadian study of six provinces by Hirdes, Mitchell, Maxwell, and White found that less than 1% of LTCF residents transitioned to the community [18].

The definition of ‘transition’ varies according to disciplinary focus but the widespread definition involves how people respond to change over time [19]. Transition may be defined as “a process of convoluted passage during which people redefine their sense of self and redevelop self-agency in response to disruptive life events” [19]. Transition of care refers to the care a patient receives as they leave one care setting and are moved to another [20]. The American Geriatrics Society describes transitional care as “a set of actions designed to ensure the coordination and continuity of health care as patients transfer between different locations or different levels of care within the same location” [21].

Previous research has focussed upon transitions from hospital to other care settings including LTCFs [22, 23] and examined transitions from LTCFs to hospital or emergency departments [24]. However, to the knowledge of these authors, no scoping review has been conducted to critically examine the existing evidence about transitions from LTCFs to the community. Therefore, this article aimed to review the published scientific research studies about transition from LTCFs to the community to examine what is known about the discharge process and its associated factors by answering three main questions:

The five-stage scoping review framework outlined by Arksey and O’Malley [25] was used to describe the current knowledge base related to transition from LTCFs to the community. These stages included: (1) identification of the research question, (2) identification of relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarizing, and reporting the results. This scoping review methodology was selected for its capacity to “map relevant literature in the field” [25]. It also allowed researchers to draw conclusions on the overall state of research activity on a topic and suggest future directions for research [25]. Although scoping reviews do not address the quality of included sources, this method was appropriate for this emerging field of study and provided a rigorous framework to carry out a review systematically.

A summary of characteristic from the 36 articles can be found in Table 1. Study objectives and post-discharge outcomes are described in Table 2 while the purpose and main findings of all articles are presented in Table 3. With the exception of seven articles [26‐32], the majority of articles focused on older adults (29/36), specifically those aged 65 or greater [33‐47]. A few articles focused on specialized populations that shared a similar characteristic such as persons with an intellectual disability [30, 32, 48] or persons who had a stroke [26, 46]. One article focused on persons who had a common experience of a motor vehicle accident [33]. The majority of articles (30/36) included both males and females [26, 28, 30‐37, 39‐59]. The main focus for most articles (21/36) was on resident profiles [26, 28, 32, 33, 35, 36, 40‐47, 51, 53‐57, 60]. The study designs employed predominantly quantitative techniques [26, 28‐30, 32‐38, 40, 42‐57, 60]. Research in this area represents a new and emerging field where over half of the included articles (22/36) were published in the last 5 years [26, 28, 29, 31, 35‐38, 41‐45, 47‐50, 52, 54‐56, 60] (Fig. 2).

Study sample sizes had a large range from less than 20 participants [31] to more than 500,000 participants in the largest sample [37]. Almost all studies were conducted in the US [27‐30, 33‐39, 41, 42, 44, 45, 47‐55, 57‐61]. Non-US research in this area is scarce [26, 31, 32, 40, 43, 46, 56] and only one article used data gathered from more than one country [32, 46]. Authors’ background and type of institution varied across studies. Single academic institutional authorship was most prevalent (21/36) [26‐28, 30‐34, 36, 41, 44, 48, 51‐55, 57, 58, 60, 61], of which five also included author partners from community locations such as hospitals and LTCFs [33, 34, 51, 56, 60] and five included research institutes, centres for aging, and non-profit partners [28, 30, 31, 36, 52]. Just over one-third of articles (14/36) were inter-institutional collaboration [29, 35, 37, 38, 40, 42, 43, 45‐47, 50, 51, 56, 59] of which six included additional community and research institutional partners [29, 37, 46, 49, 50, 56] and four were multi-national collaborations [35, 40, 43, 46].

Study findings highlight the heterogeneity and paucity of research examining transition of persons from LTCFs to the community, especially when considering the international context. Overall, the generalizability of findings in this scoping review remains greatly hindered as most were conducted in small geographic areas across the US and were led by single academic institutions. The majority of studies focussed on older adult populations with a patchwork of evidence on special populations with a shared health condition/diagnosis (i.e. stroke or acquired brain injury) or shared client experience (i.e. traumatic life event). Overall, it remains unclear what mix of multidisciplinary team members and institutional factors best support discharge planning and transition process. And finally, due to a lack of studies measuring post-discharge outcomes, it remains unclear from the current body of evidence whether discharge from a LTCF to the community promotes the health, wellbeing and quality of life of those who transition out of LTCFs and whether these transitions are cost-effective for the health care system. More research is needed in this area before we can start to confidently answer the research questions.

No gold standard emerged for the best time to identify and engage persons who may be eligible for transition out of a LTCF to the community in discharge planning activities and processes. Variation in the association between length of stay in a LTCF and potential for discharged was observed. For example, Arling [50] indicated that 85% of discharges occurred within the first 30 days of admission while Gassoumis [36] noted that the percentage of persons discharged increased to 90% within the first 90 days of entry into LTCF [36]. Interestingly, Gassoumis [36] also noted that a resident’s preference to discharge showed no effect on discharge to community after a 90 day or greater length of stay.

Considering the individual determinants of health services utilization [63], characteristics of the persons residing in LTCFs potentially eligible for discharge should be considered key to the discharge process. The needs identified in this review were primarily individual determinants. Residents residing in LTCFs were most likely to transition out of facilities if they were younger [58], married [36, 51], female [36, 42], had Medicare coverage [51], experienced daily pain [51], participated in or received intense therapy [51], were responsible for their own decisions [36] and preferred return to the community [36, 39, 50]. While demographic characteristics such as gender and age may be associated with the discharge process they were not recognized consistently as the strongest factors predicting discharge to the community. Other important facilitators of discharge included independence of the persons in cognitive and functional abilities [33, 39, 43, 50, 56, 58], medical stability [39], and fitting a community discharge profile [50]. Furthermore, persons were more likely to transition out of a LTCT if they received independent living training or community skills training [27, 36], caregiver support [27, 36, 50], medication management [60] and community supports were made available to assist persons in management of activities of daily living [43, 49].

In contrast to Poole who noted that “the need for person or ‘consumer-centered’ planning is widely cited in the transition literature” [27], findings in the current study suggest it may be less commonly discussed. Less than 15 % of articles (5/36 articles) in the current study discussed person-centered care. Although all of the number of studies were few, those that did discuss patient centered care emphasized the crucial role that person centered care planning plays to ensure the needs and preferences of the resident are heard and respected, Case managers and discharge planners play an important role to support patient centred care, provide education to the person and caregivers, and promote communication among multidisciplinary teams during transitions across the care continuum [66, 67]. Findings from the Project Home intervention noted that when a flexible organizational structure exists that empowers its case managers to advocate for client goals and preferences, then a person centered approach to care may be realized [41]. To ensure the person transitioning out of the LTCF is able to improve their health and QOL, it is important that the goals, values, and preferences of the resident be considered and incorporated throughout the discharge process. When the person residing in a LTCF, who is identified as a candidate for transition back to the community, is not the centre of the person-centred plan for care, the discharge care plan may be unsuccessful [68]. Considering this, further research is needed to examine best practices in patient centred care planning practice during the transition (discharge) process from planning to intervention and evaluation for residents transitioning from LTCFs to the community.

This scoping review identified a lack of focus on positive post-discharge outcomes such as measuring the impact of discharge on the resident and their informal caregivers’ health and QOL. Only one study [28] measured QOL and life satisfaction as post-discharge outcomes. Robinson et al. [28] found that QOL and life satisfaction improved for the majority of respondents who transitioned from an institution to the community. An interesting post-discharge outcome related to QOL was suicide rates post-discharge. One study revealed that suicide risk was significantly elevated following discharge from a Veteran Affairs (VA) nursing home compared to matched persons receiving care from the VA system [55]. This study indicated that suicide risk was greatest in the first 3 weeks post discharge [55]. While this study was limited to a population of older veterans it is an important finding as suicide can be indicative of life dissatisfaction [69] and warrants further research.

Other studies focussed on measureable available outcomes such as death, rehospitalization, or readmission without describing in depth the role that the discharge process had in relation to the outcome. Meaning, if the person died, the research did not describe in detail how the transition related to that death. It would be beneficial for future research to investigate whether outcomes which occurred post-discharge would not have occurred or have been preventable had the person not transitioned out of the LTCF. LTCF readmissions and their predictors, important measures at post-discharge, are used to plan interventions and allocate resources [39]; however it is also essential to look deeply at both positive and negative benefits that transition to the community may evoke. Gains obtained with transition to the community may be related to independence, well-being and social inclusion [31]. However, more research examining what occurs after discharge is a topic where more studies are needed [33, 48].

To determine the degree to which the post-discharge goal to improve the person’s health, wellbeing, and QOL was attained, outcome measurements should include both objective and subjective measures. While the majority of studies used individual level data and described a focus on the person, there was a lack of reporting of person-centred goals, values and preferences in relation to discharge and post-discharge outcomes. Instead, articles in the current review focused on measurable outcomes such as death, rehospitalization or readmission without describing in depth the person’s perspectives on improvements in their health, life satisfaction or QOL. It remains unclear from the current evidence available whether person-centred goals can be obtained post-discharge. Further research in this area should focus on measuring whether persons were able to receive post-discharge care supports in their new location, which were matched to their person-specific need. Moreover further research should examine whether the transition was successful to promote the person’s sense of control, empowerment, and improve their QOL as had been noted by Fry [5].

Finally, the needs to transition related to discharge planning for residents should include the needs and preference of informal and formal care supports that will be caring for persons in the community. Of the articles included in this review, fewer than half of the articles described the perspectives of stakeholder’s involvement in the transition. There remains a gap in understanding regarding the availability of and eligibility for community based care services and supports. These articles highlight a gap in our understanding of post-discharge outcomes and whether or not current transition programs are successful from the perspective of the person of focus and their circle of care.

Due to the emerging nature of research in this field, a systematic review is not yet warranted. Among the reviewed articles there was a lack of generalizability due to variation regarding the location as most articles were limited local studies and were conducted in the US. The US health system organization is unique, well-marked by Medicare and Medicaid programs for older adults and low-income people [70], making the findings obtained very specific and concentrated, and their use difficult for the international scientific community. It is unclear whether study findings would be applicable in other health care systems such as the Canadian publically funded system [71], Switzerland’s universally mandated private insurance system [71] or a two-tier system such as Japan’s [71]. Lack of generalizability of research findings necessitate further research and replication of studies [45] in this area to better understand processes and outcomes regarding discharge from LTCFs.

Articles reviewed in this study presented many recommendations for future research acknowledging inconsistences in the knowledge base and highlight areas where more research is needed. Gaps identified in currently available research warrant further research to expand understanding of the factors and barriers, which influence discharge in order to inform policy regarding transitions in care to the community. Despite an increase in the literature on this topic in recent years, there is still a need for better understanding of the complexity of the discharge process and the factors and barriers, which can influence discharge. This includes the need for more research on post-discharge outcomes when transitioning from a LTCF back to the community.

CIHR implemented Canada’s Strategy for Patient-Oriented Research (SPOR) to address Canada’s struggles with turning influential research into high-quality and cost effective care [72]. Moving forward there is a clear need for more patient centred research in regards to transitions from LTCFs to the community and emphasis placed on measuring whether the person in fact experienced improve health, wellbeing, and QOL. While there is an understanding of measurable post-discharge outcomes such as death, rehospitalization and readmission there is a need to better understand patients experiences and whether or not these discharge programs are successful from the point of the persons of focus and the perspectives of members of their circle of care including their informal caregiver(s). In addition, future research should investigate whether post-discharge outcomes would have/have not occurred, been prevented, or delayed had the person not transitioned out of the LTCF.

This scoping review presents the scientific scenery of discharge out of LTCFs to community-based locations such as private homes, shared residences, or independent care. Most studies included older adult populations, were based in the USA, and focussed on understanding residents’ perspectives. Gaps remain in the understanding of post-discharge outcomes such as effects on the person’s health, wellbeing and quality of life. Little is known about whether or not the discharge programs are successful from the person’s perspective and from the views of members of their circle of care. To create best practices in this area, future research needs to expand understanding of the barriers and facilitators of resident transitions and provide more detailed description of subjective and objective post-discharge outcomes. Additionally, there is need for replication of study findings and to expand generalizability of findings beyond small geographic regions in the USA. With such evidence, the option to transition from LTCFs to the community can be further developed.