This scoping review explores circumstances surrounding the decision about, and eventual experience of, transitioning older adults into alternative levels of housing (ALH), such as long-term care. This topic is examined from a family member perspective, given their exposure and involvement in the care of older adult relatives during this transitional period. The scoping review methodology is based on the framework of Arksey and O’Malley and subsequent recommendations from Levac, Colquhoun, and O’Brien. Approximately 470 articles were reviewed covering the period between 2000 and November 2014; 37 articles met inclusion criteria. A temporal organization of themes was used to describe the experiences of family members in the pretransition, active transition, and posttransition periods of moving older adult relatives into ALH. This paper highlights the transitional period as a time of crisis, with a lack of planning, support, and transparent discussion. This study identifies a need for future research on the potential benefits of family support groups, interim transitional housing options, different models of ALH, changing roles in the posttransition period, and the need for a comprehensive list of housing options for older adults. Results have the potential to inform policy/practice and improve the lives of older adults and their family.
By 2050, individuals aged 60 years and older will comprise approximately 22% of the world’s population [
Until a final decision is made to transition into a collective dwelling, support and assistance from others play a vital role in maintaining dignity and preserving a meaningful life [
It is well known that informal caregiving responsibilities can place a significant demand on family members, especially members of the “sandwich generation” who must juggle care demands of child-rearing, employment, personal interests, and care for their aging friends and relatives. Given their exposure and involvement in the care of older adults’ relatives, family members possess a unique perspective that has the potential to enrich our understanding of the circumstances surrounding the decision about, and eventual experience of, transitioning older adults into alternative levels of housing, such as long-term care. Greater recognition of the overall experience and the issues involved in transitioning older adults into alternative levels of housing from a family member perspective is thus an important area of research. This research area has the potential of informing policy and practice and ultimately improving the lives of older adults and their family members.
Over the past two decades, there has been a modest increase in the number of research studies exploring the experiences of family caregivers during the transition process of a loved one into alternative levels of housing support. Three literature reviews have been conducted on this topic [
A scoping review differs from systematic reviews, in that the latter are more likely to identify and address more well-defined and focused questions as well as judge the quality of included studies and are limited to specific designs. A scoping review is the preferred type of review to focus on key experiences of family members as they help to transition their older adult relatives into alternative levels of housing (e.g., long-term care, nursing home, retirement homes, and assisted living facilities). In keeping with the tenants of scoping reviews, our presentation does not include evaluation of the methodological quality of included articles.
The methodology of this scoping review is based on the framework of Arksey and O’Malley [
Arksey and O’Malley [
According to Arksey and O’Malley [
Selection of studies should be an iterative process of searching the literature, refining the search strategy, and reviewing articles for study inclusion. The following process was used to select studies. First, the database search returned 433 unique results, after accounting for 309 duplicates. Second, examination of key articles produced an additional 37 results. All results were included in the title and abstract review. Results were included for full-text review if they focused on a family members’ experience or decision to transition their older adult relative to an alternate type of permanent housing. Older adult relatives were considered to be 65 years and older. The transition had to be to housing that would provide more assistance or a higher level of care for the older adult than their current dwelling (e.g., transitioning from an assisted living facility to a nursing home). To be included in our review, results had to be published as an article rather than other types of publications such as a thesis or abstract.
A single reviewer (AWG) completed the initial title and abstract review, rating each search result as relevant or not. A second reviewer then reviewed results where relevance was not clear (SK). In total, 37 articles were identified for full-text review.
Two reviewers (MT, CM) extracted key items or variables from the studies reviewed in order to address the research question. An initial data extraction table was created by MT and included the following headings: general information (e.g., first author of study, year of publication, publication type, and country of origin); study design (e.g., qualitative, quantitative, mixed methods, and reviews); study aim; and participants (e.g., study participants, sample size, sex, age, persons with dementia included, and diagnosis). Data extraction was conducted in consultation with SK and AWG.
To analyze the extracted data, a combination of tabular summaries, content analyses, and team discussion were used. CM created a summary table of key themes generated from the literature and categorized under the following headings: themes, subthemes, and quotes/notes. The literature was further organized into time periods, including the pretransition, active transition, and posttransition experiences of family members; and information was collated into key themes that traversed the literature. This summary was created in consultation with SK and AWG.
A total of 37 articles were identified as relevant and met the inclusion criteria. Of the 37 articles, two were editorials [
Year of article publication.
Study country of origin.
A variety of settings were involved in transitions to alternative levels of housing. Given the number of countries represented in this scoping review, a variety of similar descriptors were used. These descriptors included transitions from the older adult’s independent dwelling, a family members home, hospital, long-term care, assisted living, congregate housing, retirement home, and care facility, to assisted living home, nursing homes, nursing facilities, long-term care facilities, aged care facilities, care homes, and institutional homes. In all cases, individuals were transitioning into new housing with additional support.
A temporal organization of themes [
The pretransition period includes information on planning processes and outcomes, precipitating factors that lead to transition, emotions expressed by family members prior to the decision to transition, and primary reasons against the transition. The active transition section of this review explores feelings of being pressured, lacking choice and being rushed, informal and formal influences, and the quality of nursing homes as key themes highlighted in the literature. Furthermore, the posttransition period is presented as a period of emotional and role adjustment and incorporates key factors contributing to familial satisfaction and adjustment.
The pretransition period encompasses the time prior to the decision to transition an older adult into an ALH. Initially, family members may or may not be aware of the need to transition their older adult relative; however, gradually or through crisis, they come to realize the need for additional support in order to maintain wellbeing and preserve quality of life. For this reason, this phase is described as the pretransition time period initiating the decision against or for the transition.
The pretransition process is described in the literature as a time characterized by two extremes: limited planning and crisis transitioning or careful planning and gradual transitioning to ALH. Each of these extremes is discussed next.
The decision to transition older adults into ALH is most often initiated by a crisis situation, such as an acute admission to hospital or the sudden deterioration of an older adult’s and/or caregiver’s health [
Several reasons for a lack of planning for ALH were found. Many family members perceive ALH as a last resort and hold off on admission for as long as possible until they can no longer manage, alternative resources and services fail, and/or there are no other options [
In some cases, family members may not even discuss or see the need for entry into ALH until a crisis occurs and catches their attention [
Planning for the transition of older adults into ALH is generally regarded as a more positive experience and is described as an “anticipatory” or gradual transition [
Several factors that precipitate the transition of older adults into ALH were found. Penrod and Dellasega [
Health deterioration precedes the process of relocating older adults into ALH [
Physical health concerns, such as hypertension, diabetes, fractures, stroke, incontinence, vision loss, falls, and immobility further necessitated transition decisions [
Deteriorating physical and mental health status of family caregivers also precipitated transitions to ALH [
According to Buhr et al. [
Progressive decline in the physical and mental health status of older adults intensifies caregiver roles and responsibilities [
Family caregivers indicate that they receive little support from relatives, community members, healthcare professionals, and the government when caring for older adults [
Despite the burden of caregiving, the literature suggests that many family caregivers are reluctant to independently choose nursing home placement for older relatives [
The pretransition process is an emotionally turbulent time for many family caregivers who are exposed to complex emotions ranging from ambivalence and apprehension to guilt, powerlessness, worry, and a deep sense of loss [
A few authors referenced ambivalence experienced by family caregivers as an individual struggle to weigh positives with negatives during the transition process [
Family caregivers also experienced a deep sense of loss and/or anger during the pretransition phase [
The pretransition process has been described as a period of ambivalence and a process of weighing advantages and disadvantages of ALH transitions. This section includes literature on the key reasons why family members decide against or delay transition.
Conflict between family caregivers and older adults or other relatives can prevent or delay transition to ALH [
Conflict between siblings or other family members also causes a great barrier for caregivers when deciding to place older adults in formal care [
Cultural expectations placed on family caregivers prevent them from not only discussing the need for the transition but also initiating the process of relocation to ALH due to fear of dishonouring their family by failing to perform filial duties [
Cultural competency in ALH was identified as another reason for deferring the transition. According to Crist [
Some caregivers decide against transitioning older adults into ALH because of negative perceptions of nursing homes and the belief that they can ensure a better quality of life at home for their older relative [
Suitability of facilities and timing of transitions were perceived as another barrier preventing relocation to ALH. In terms of suitability, issues with affordability of appropriate support, inability for homes to accommodate spousal partners, and providing care for individuals with low to moderate dementia symptoms prevented transitions from occurring [
The pretransition period is characterized by two extremes of planning: gradual planning and crisis planning. While gradual planning is generally perceived more positively in the literature, crisis situations are the most common initiating factor and translate into difficult transitions for family members. Health deterioration of older adults and family members and influence from formal and informal networks are the key precipitating factors for transitioning into ALH. The pretransition period is also described as an emotionally turbulent time, characterized by ambivalence, guilt, powerlessness, apprehension, worry, and a deep sense of loss. Furthermore, there are several factors that can delay or deter the decision to transition, namely, familial conflict, cultural expectations regarding filial piety, negative perceptions of long-term care, and the suitability of nursing homes in meeting the needs and preferences of older adults and their family members.
The active transition period represents the time following the decision to transition older adults into ALH and includes the process of accessing services and information and determining the location for alternate housing. Family members’ experiences, influences, and determining factors for choosing housing are discussed.
The active transition period has been described as a time filled with pressure and limited choice and control [
A lack of choice and control during the active transition stage is a dominant theme in the literature and traverses interactions with healthcare professionals and service providers, while also intersecting with the search and selection process for suitable homes and access to supporting information to facilitate the transition. According to Cheek and Ballantyne [
A lack of communication between healthcare providers and family members can contribute to feelings of powerlessness and family conflict. It can also lead to miscommunication with older adults leaving them feeling unwanted and burdensome and troubled with the decision to return home or move to a new environment.
Limited communication between family members and healthcare providers also impacts decision-making by placing time pressures on family members to move older adult relatives out of hospital beds and into ALH facilities [
Pressured decisions were found to be particularly difficult for adult children. Edwards et al. [
Many are forced to concede to the pressures of moving parents out of hospital in the absence of an alternative housing arrangement by making quick decisions. These decisions may result in poor quality care or from placing older adults into respite care settings only to have them move out shortly thereafter when a more suitable bed becomes available [
Pressured decisions were also common among family members when time came to accept or decline offers for nursing home placement [
Family members reported having limited access to information on available resources, support, and the overall process of transitioning older adults into ALH [
Informal and formal support networks play an important role during the active transition process [
Choosing a nursing home involves a complex process of weighing individual priorities with available services. There are several key priorities for family members when choosing an ALH facility for older adult relatives. Geographic location and proximity to home/family/friends and quality care are consistently identified as the most influential factors affecting the selection process [
The active transition period has been described by family members as a time characterized by pressured decisions, feeling rushed, lacking choice and control, having limited communication with health and social service providers, and lack of access to information. Positive interactions with formal and informal support networks can help family members identify pros and cons of transitions and can provide them with access to valuable placement information, advanced care services, and comfort in knowing that family members’ best interests are being addressed. Furthermore, family members endure a process of weighing priorities with available services in order to choose appropriate ALH. Geographic location, proximity to family members and friends, and quality care are identified in the literature as the most influential factors associated with transitions.
The posttransition period refers to the period of time following the transition of older adults into ALH. It has been described as a period of adjustment, both emotionally and socially, as family members assume new roles and responsibilities while creating a new “status quo” [
Researchers highlight transient relief, guilt, ambivalence, and loneliness as primary emotions experienced by family members during the posttransition period. A general sense of relief is attributed to finding a good home and being grateful for a reasonable housing solution to what is perceived as an insurmountable problem [
Feelings of relief about the burden of care being lifted contrasts with self-accusations and feelings of guilt because of family members not performing their duty to care, ambivalence towards the future of their parent, permanence of the transition, and uncertainty regarding whether or not they chose the “right” home [
Many expressed guilt towards breaking promises and being unable to help older adults stay at home longer [
It is important to note that many of these emotions were experienced simultaneously [
Transition into ALH impacts roles and responsibilities assumed by family caregivers in the posttransition period [
Familial satisfaction during the posttransition period is contingent upon a number of factors. First, family members feel more at ease and less ambivalent about their decision about place when they observe older adults receiving adequate, quality care [
Dissatisfaction among family members in the posttransition period was associated with negative interactions with family members and friends who questioned their decision to place older adults in ALH. In many cases, these family members and friends were individuals who lacked experience with nursing home placement [
The posttransition period has been described as a time of emotional and role adjustment for family members. Families experience a multitude of emotions, most commonly ambivalence, guilt, transient relief, loneliness, and luck. Many continue to provide caregiver support for older adults in ALH. Positive adjustment and satisfaction is achieved through encouraging interactions with ALH staff members, involvement in nursing home support groups, and personal observation of quality care in ALH. Poor adjustment in the posttransition period occurs when family caregivers remain ambivalent regarding their decision about place, lack social support, and experience substandard interactions with ALH staff members.
This scoping review adds to the body of knowledge on family members experiences of transitioning older adult relatives into ALH. It demonstrates that the transition process is complex and has multiple intersecting factors that can result in smooth or difficult transitions into ALH. A majority of family caregivers experience the pretransition and active transition periods as a time of crisis. A lack of planning, information, support, and transparent discussion is at the root of this problem. With more than 2 million Canadian caregivers of older adults, it is essential that services be made available to family members and older adults in order to support gradual transitions that consider all available options for housing and additional support [
This scoping review also illustrates a significant body of literature on the pretransition period from the perspective of family caregivers. There is an apparent need for additional research on the posttransition period, particularly family caregiver adaptation and adjustment socially, economically, and psychologically. Furthermore, there is a need to explore the impact of continued family caregiving in ALH, specifically the various roles (if any) assumed by family members. Interestingly, the articles that reported on the sex of the caregiver participants
Additional research is necessary for assessing the effectiveness of and models for providing support groups for family members with loved ones in nursing homes. Nolan and Dellasega [
Future research should also focus on alternative models of ALH. There are new and innovative housing options available to older adults that differ from traditional nursing and retirement home care models, and these options may offer a means of easing the transition process while maintaining quality of life for older adults and their family members. These models include, for example, community based villages and supportive housing apartments. While these models may be shown to be useful with additional research, it will be important to consider other factors associated with the social determinants of health, particularly cost and out-of-pocket payments which will undoubtedly limit options for older adults of lower income. Nevertheless, additional research on new and innovative models of housing may propel enhancements to existing models, ultimately improving services for older adults.
There is also a need to establish a comprehensive list of existing housing options that can be easily accessed by older adults, family members, and friends. In order to effectively distribute this information, a multimodal approach must be used and should include, for example, providing information in medical offices, community centers, religious institutions, newspapers/community newsletters, and other places of gathering. Strategies for distributing information must be community-specific, user-friendly, and accessible in multiple formats, including electronic and paper copies. Government agencies, such as the Community Care Access Centre, should take a leading role as navigators of the housing system by providing information on ALH, both private and publicly funded, to older adults and their family members in order to facilitate planning, reduce the economic burden of caregiving, and prevent future crisis.
A list of recommendations for choosing ALH and easing the transition process should be developed using the expertise of family caregivers with lived experience of transitioning a loved one into ALH. Weber and Bailey [
Future research should also explore the use of interim care options for older adults as potential ways of trialing specific types of housing and/or providing respite for caregivers. Aubrey-Fletcher [
A scoping review of literature published from 2000 to 2014 identified three key time periods involved in the transition to ALH: pretransition, active transition, and posttransition periods. Literature on the pretransition period highlights two extremes of planning: gradual and crisis planning, with the latter representing a majority of family members’ experiences during this transition. Several factors precipitate the transition process, including health deterioration of family members and the older adult being cared for and formal/informal influences. The literature highlighted barriers to transition, which include familial conflict, cultural expectations, negative perceptions of long-term care, and suitability of nursing homes.
The active transition period is characterized by pressured and rushed decisions with limited choice, lack of access to information, and communication with providers. This is a time when family members weigh priorities with preferences regarding the transition. Furthermore, positive interactions with formal and informal networks can help family members thrive during the transition period.
The literature describes the posttransition period as a time for emotional and role adjustment. Positive adjustment and satisfaction is maintained through positive interactions with staff members, participation in support groups, and observation of provision of quality care. On the other hand, poor adjustment occurs when family members remain ambivalent, lack social support, lack access to information, and engage in substandard communication with staff members.
The authors declare that there are no conflicts of interest regarding the publication of this article.
This research was supported through a team grant by the Saskatchewan Health Research Foundation.