Shared decision‐making with adults transitioning to long‐term care: A scoping review

Abstract Background Transitions to long‐term care are challenging for individuals and often associated with a loss of autonomy. Positive experiences are noted, especially when decisions involve the individual in a person‐centred way which are respectful of the person's human rights. One approach which facilitates self‐determination during a transitional period is shared decision‐making, but there is a lack of clarity on the nature and extent of research evidence in this area. Objective The purpose of this scoping review is to identify and document research related to shared decision‐making and transitioning to long‐term care. Methods A comprehensive search in CINAHL, Medline and Psych‐info identified papers which included evidence of shared decision‐making during transitions to a long‐term care setting. The review following the JBI and PAGER framework for scoping reviews. Data were extracted, charted and analysed according to patterns, advances, gaps, research recommendations and evidence for practice. Results Eighteen papers met the inclusion criteria. A body of knowledge was identified encompassing the pattern advancements in shared decision‐making during transitions to long‐term care, representing developments in both the evidence base and methodological approaches. Further patterns offer evidence of the facilitators and barriers experienced by the person, their families and the professional's involved. Conclusions The evidence identified the complexity of such decision‐making with efforts to engage in shared decision‐making often constrained by the availability of resources, the skills of professionals and time. The findings recognise the need for partnership and person‐centred approaches to optimise transitions. The review demonstrates evidence of approaches that can inform future practice and research to support all adult populations who may be faced with a transitional decision to actively participate in decision‐making.


| INTRODUC TI ON
Shared decision-making (SDM) is described as a joint process whereby healthcare professionals work together with the person to reach a decision about their treatment and care (National Institute of Health and Care Excellence, 2021). SDM facilitates a partnership approach, in essence Elwyn et al. (2012) argues that SDM is dependent on a respect for the ethical principle of self-determination, wherein healthcare professionals support the autonomy of the person to make decisions. There are many approaches to SDM with Bomhof-Roordink et al. (2019) identifying 40 SDM models of which the key elements include making decisions, information exchange and facilitating choice. However, SDM can be challenging for some populations especially when decisions are presented to people following a health or care crisis (Bunn et al., 2018). One such challenging circumstance involves SDM with a person involved in a residential transition to LTC. Indeed, such transitional decision-making are often more dynamic, complex and contextual than other treatment related decisions.
International figures report that between 1 and 5% of the world's population live permanently in a long-term care (LTC) setting (World Health Organisation, 2022). The term LTC describes a variety of services including residential facilities designed to support a person's health and personal care needs for a period of time (National Institute on Ageing, 2017; Zimmerman & Sloane, 2007). The demand for LTC provision is predicted to increase due to population ageing, improved survivorship with long-term conditions and societal changes within family structures (Organisation for Economic Cooperation and Development, 2022), which may necessitate a transition to a residential LTC setting (Chyr et al., 2020; National Institute on Ageing, 2017). Each new resident will experience a transitional period described as a passage of time where the individual moves from one life phase, situation or status to another (Meleis, 2010, p. 11). Such transitions occur prior to, during and for a period of time after the relocation. Transitioning to a LTC setting is considered among the most significant and disruptive experiences for a person and their family.
Transitioning to LTC is not always associated with negative experiences; nonetheless, the majority of papers tend to focus on the negative aspects (Davison et al., 2019;Johnson & Bibbo, 2014).
One such experience is the loss of autonomy (O'Neill et al., 2020;Paddock et al., 2019). Conversely, positive experiences were noted, especially when decisions involved the individual in a person-centred way which were respectful of the person's right to self-determine (Brownie et al., 2014;Gilbert et al., 2015;Regier & Parmelee, 2021;Richards, 2011). However, strategies which promote selfdetermination by involving the person in decision-making are often not prioritised during transitions into LTC (O'Neill et al., 2020). SDM is proposed as an approach to facilitate the person's involvement in such transitional decisions.
Despite an increased awareness and utilisation of SDM in health and social care, a preliminary search of existing systematic and scoping reviews identified 2 reviews. Initially, Gravolin et al. (2007) assessed the effectiveness of decision-making support interventions delivered by professional staff on the outcomes for older adults facing the possibility of entering LTC. The second was a scoping review by Manthorpe and Martineau (2010) which sought to identify and analyse evidence on advocacy in relation to the decision to move to a LTC facility. Both reviews identified no evidence involving SDM during transitions to LTC. Presently, there is a lack of clarity on the nature and extent of research evidence on how SDM can be utilised by nurses and other professionals as an approach to facilitate the persons involvement in transitional decision-making. Therefore, the

Summary Statement of Implications for Practice
What does this research add to existing knowledge in gerontology?
• The review identifies the type and level of international evidence exploring shared decision-making with adults who are experiencing a transition to long-term care.
• The findings demonstrate approaches and evidence that can be applied to influence future practice, research and policy to support populations who may be faced with a transition to actively participate in decision-making.
What are the implications of this new knowledge for nursing care with older people?
• The review offers evidence of the facilitators and barriers to shared decision-making which could assist nurses to support the older person in transitional decision-making.
• Community nurses could play a key role in educating and engaging older adults in shared decision-making.
• This review provides nurses with practice-based approaches which could facilitate older adults with cognitive impairment engage in shared decision-making.
How could the findings be used to influence policy or practice or research or education?
• The interdisciplinary focus of the evidence reflects all professionals including clinicians, researchers, policy makers, research commissioners and service providers who support older adult populations.
• The development of a workshop with user friendly resources could be used to educate nurses and other homecare workers supporting adults to engage in shared decision-making.
• This review provides evidence which aligns with the United Nations sustainable developmental goals namely to reduce discrimination, inequality and promote inclusion of populations. current state of research and practice is still unclear which gave impetus for this review.

| Aim and objectives
To identify and document the nature and extent of research evidence related to SDM and transitioning to LTC among adults.

Review objectives
• Describe the characteristics of evidence on SDM within the context of transition to LTC.
• Examine developments in SDM and how it is operationalised and evaluated.
• Identify the facilitators and barriers to SDM.

| ME THODS
It was recognised that the evidence may originate from a variety of scientific fields involving different methodological approaches. Therefore, a scoping review was chosen as an approach to evidence

synthesis. This review was based on the Joanna Briggs Institute
Manual for evidence synthesis (Peters et al., 2020). This framework was chosen as it details a set of steps to ensure a systematic approach using both the PICO and Prisma ScR checklist ensuring reproducibility of findings. The PAGER framework (Bradbury-Jones et al., 2021) was also used to provide a structured approach that guided the reporting of this scoping review through the analysis of Patterns, Advances, Gaps, Evidence for practice and Research recommendations. The PCC mnemonic (population, concept and context) was used to identify the main concepts and inclusion criteria for the scoping review (Peters et al., 2020). The full details of inclusion criteria are outlined in Table 1.

| Search strategy
Involved a three step process as prescribed by Peters et al. (2020).
Initially a preliminary limiting search of two appropriate databases, ClNAHL and Medline, was undertaken to identify a comprehensive list of relevant text words contained in the title and abstract to refine the search terms. A librarian assisted in further refinement with analysis of MESH headings which informed the development of a full search strategy using all keywords across databases. The full search strategy is outlined in  (Hinde & Spackman, 2015).
Furthermore, as several protocols were identified from database searches, a detailed search of primary authors' ResearchGate profiles was undertaken.

| Study selection
Following the full database searches, citations were imported into Covidence software. Source selection at (title/abstract screening and full-text screening) was performed by two reviewers [CE and MC], independently. The full-text articles selected for review were considered against the inclusion criteria by the two reviewers with disagreements resolved through discussion. Reasons for exclusions of full text were recorded.

| Data extraction
Data were extracted under the following headings author, country, year, aim, definition of transition and SDM, setting, sample, duration, design, results/outcomes and key findings (Table 3).

| Analysis of the evidence and presentation of results
The scoping review is reported narratively using a combination of

| RE SULTS
The search identified 1974 papers with 476 duplicates removed.
There were 1498 papers screened by title and abstract, from which 1349 papers were deemed irrelevant. The remaining 149 papers were read in full and, 127 did not meet the inclusion criteria. Citation searches (N = 4) and first authors searches on ResearchGate (N = 3) identified an additional seven papers which met the inclusion criteria. In total, 18 papers were included in this review. The search is reported as per PRISMA flowchart Figure 1.
The results were aligned and synthesised according to the PAGER framework detailed in Table 4.

| Characteristics of included papers
The papers were mainly published between 2014 and 2021 reflecting recent interest in this area. Before this period, there is a dearth of evidence which was captured in the two included reviews the search identified (Gravolin et al., 2007;Manthorpe & Martineau, 2010).
Geographically, the majority of the papers (N = 8) originated from the Canadian homecare setting, with the Netherlands (N = 3), UK (N = 3), the United States (N = 1), Australia (N = 1) and Sweden (N = 1) also contributing to the knowledge base. There has been an expansion in interest among interprofessional services (N = 9).
The evidence was at microlevel involving interprofessionals in day to day practice engaged in small scale research studies over short durations. Patterns in sampling largely focused on older adult populations (N−17); however, the population descriptors did not always make clear the cognitive capability of people transitioning to LTC.
Seventeen of the papers were community based transitions from the participants' homes to LTC with the final paper involved a transition from an acute setting to LTC (Mukamel et al., 2016). There were a wide range of designs included, which are discussed later under advances in SDM during transitions to LTC. The characteristics of included papers are detailed in Table 5.
The review identified a diverse body of knowledge on SDM during transitions to LTC. Three overall patterns were identified: advances and innovation in SDM during transitions to LTC, facilitators of SDM during transitions to LTC, and barriers to SDM within this context.

| Advances in SDM during transitions to LTC
Advances represent the developments and innovation in both the evidence-base and methodological approaches to research exploring SDM and transitioning to LTC. The sub-patterns of framing the concept, theoretical advancements and the emergence of interventions illustrate advances in operationalising SDM into practice.

Population
Adult: A person aged 18 years and older who had relocated to a long-term care facility or was considering a future relocation. Informal caregivers included family members or any individual who provided continuing care and support to an individual without financial reward. Formal caregivers involved paid staff including nurses, social workers, case managers, social carers, health care assistants and other allied health professionals who were involved in supporting a person transitioning to LTC.

Concept
A transition involves a planned relocation to a LTC facility. Within this review the transitional period is defined as the period of time one begins to consider a permanent relocation to a long-term care setting until 12 months after the move. This review considered studies which encompassed the range of context and situations where transitions to LTC may occur. These included developmental or life cycle transitions such as ageing which may trigger a relocation of residence (Meleis, 2010: 129); Situational transitions involving relationship or family transitions occurs when one considers or relocates to a long-term care facility (Davies, 2005), Health-illness transitions occur within the course of an illness or condition which may impact the person's independence or care requirements (Schumacher & Meleis, 1994). Studies which contained, facilitated or reported on the phenomenon of SDM within the context of transitioning to LTC. The attributes of SDM were based on the conceptual description by Elwyn et al. (2012): Choice talk: Studies which made efforts to ensure that the person or their advocate (family, caregiver or other) understand the reasonable options available. This includes the use of decisional aids, reasonable adjustments, offering choices, preferences, personalised to the person to aid involvement, pros and cons. Option talk: Studies which made efforts to detail available options, checked knowledge, harms/ benefits, supported the person decisions through decisional aids, advocacy or summary. Studies which made efforts to support relational autonomy, namely how decisions can relate to interpersonal relationships and mutual dependencies (Elwyn et al., 2012). Decisional talk: Studies which made efforts to consider the preferences of the person when deciding what is best. Exploring and respecting what matters most to the person leading to informed preferences. The reviewed included studies that contained any of the above attributes and features of SDM.

Context
A LTC residential facility provides a broad range of services including personal, medical or social care which supports people with cognitive or functional limitations to self-care or other activities (Zimmerman & Sloane, 2007). This scoping review considered such facilities including residential care, assisted living, nursing homes, skilled nursing facilities, continuing care retirement communities where a person resides.

Types of sources
Both qualitative and quantitative studies were considered. Sources include primary research studies, reviews, dissertations and evidence-based guidelines. Discussion papers, policy documents, commentary, editorials papers were excluded. Grey literature were excluded as this review focuses on peer-reviewed evidence.

TA B L E 2 Search strategy
Title: Shared decision-making with adults transitioning to long-term care: A scoping review 29 TH

S2
Transition* or relocat* or transfer* or mov* or progress* or relinquish* or displacement or resettl* or re-hous* or rehous* AB & TI OR using CINAHL headings (MH "Transitional Programs") OR (MH "Transitional Care") or (MH "Relocation") (424,244) AND S3 "shared decision making" or "shared decision-making" or "decision making" or "decision-making" or "decision making process*" or "decision-making process*" or "family decision mak*" or "patient decision mak*" or partnership or collaboration or alliance or "goal sharing" or "shared goal*" or "information sharing" or "interprofessional collaboration" or "decisional support*" or "decisional aids" or "decisional coaching" or enablement or "person-centred*" or "active participation" or "collaborative decision making" or "collaborative partnership" or "collaborative working" or "patient involvement" or "patient participation" or "patient engagement" AB OR TI OR using CINAHL headings (

And S3
"shared decision making" or "shared decision-making" or "decision making" or "decision-making" or "decision making process*" or "decision-making process*" or "family decision mak*" or "patient decision mak*" or partnership or collaboration or alliance or "goal sharing" or "shared goal*" or "information sharing" or "interprofessional collaboration" or "decisional support*" or "decisional aids" or "decisional coaching" or enablement or "person-centred*" or "active participation" or "collaborative decision making" or "collaborative partnership" or "collaborative working" or "patient involvement" or "patient participation" or "patient engagement" AB OR TI OR using MESH headings (
OR Using APA Thesaurus of psychological index terms DE "Long Term Care" OR DE "Continuum of Care" OR DE "Residential Care Institutions" OR DE "Elder Care" OR DE "Nursing Homes" OR DE "Nursing Home Residents"=30,384 (131,586) And S2 Transition* or relocat* or transfer* or mov* or progress* or relinquish* or displacement or resettl* or re-hous* or rehous* AB OR TI OR using APA Thesaurus of psychological index terms DE "Transition Planning" OR DE "Life Changes"=5,125 (509,242) And S3 "shared decision making" or "shared decision-making" or "decision making" or "decision-making" or "decision making process*" or "decision-making process*" or "family decision mak*" or "patient decision mak*" or partnership or collaboration or alliance or "goal sharing" or "shared goal*" or "information sharing" or "interprofessional collaboration" or "decisional support*" or "decisional aids" or "decisional coaching" or enablement or "person-centred*" or "active participation" or "collaborative decision making" or "collaborative partnership" or "collaborative working" or "patient involvement" or "patient participation" or "patient engagement" OR using APA Thesaurus of psychological index terms

TA B L E 3 (Continued)
were involved in SDM in housing decisions. Légaré et al. (2014)

| Sub-pattern 2: emergence of interventions
The first intervention papers included user-centred iterative designs (Garvelink et al., 2016;Granbom et al., 2020;Lord et al., 2016;van Leersum et al., 2020), representing advancement in how the topic was approached. Qualitative and quantitative descriptive findings were used to inform the development of decisional supports (Garvelink et al., 2016;Granbom et al., 2020;Lord et al., 2016;van Leersum et al., 2020). Earlier papers (Garvelink et al., 2016;Lord et al., 2016)  There is evidence of proactive supports which accommodate individuals at various stages of decision-making.
There is growing evaluations from a Canadian clinical trial relating to the impact of decisional-support interventions among family caregivers.
There is evidence of a lack of inclusion of older adults in SDM during transitions to LTC.
There is evidence of the impact resources has upon SDM within the context of transitioning. Evidence also exists of supporting one's ability to exercise choice through SDM. Evidence of collaboration between the older adult, family caregivers and healthcare professionals working together to support decision-making during transitioning to LTC There is a deficiency of diversity among sampling strategies.
At the time of this review, the search identified no evidence from the older adults perspective from the Canadian trials (Légaré et al. 2015.

No evidence of longitudinal
research.
There is a need to address the acceptability and useability of interventions among adults who are not proficient with technology and the Internet. There is a need to explore SDM among diverse populations who may be faced with a transitional decision.

Number of papers Author and design
Observational 3  on whether to remain at home or move to a LTC facility. These interventions were implemented as part of the design in two related study protocols: a multi-centre cluster RCT (Légaré et al., 2015) and a stepped wedge cluster RCT   reported that caregivers (n = 309) who perceived an active role in decision-making regarding housing for a cognitively impaired older adult using a control preference scale increased from 12 to 18 per cent for the intervention group. Secondary outcome measures included preferred versus actual housing option, decisional conflict, regret and burden showed no effect upon caregivers.

| Sub-pattern 3: theoretical underpinnings
The review also maps patterns in theoretical developments. The

| Facilitators to SDM during transitions to LTC
The review identified enabling factors including proactive planning, exercising choice and collaboration as key to supporting the person and their family caregiver(s) to make decisions about their living arrangements and future place of care (Garvelink et al., 2019;Hillcoat-Nallétamby & Sandani, 2019;Légaré et al., 2014;Lord et al., 2016). The evidence suggests that practices which enable the person's involvement in decision-making must be flexible to respond to emerging needs and fluctuating capacity (Lord et al., 2016).
Involvement of family caregivers was viewed as a facilitator of SDM, as their decisions strongly reflected the wishes and preferences of the person and demonstrated a respect for their voice which was of great importance to family caregivers (Garvelink et al., 2019).
Supporting one's ability to exercise choice is key to SDM. Lord et al. (2016) reported that enabling SDM among older adult populations involved providing several options such as home-based supports, rather than relocating to LTC as the only option. Subsequent SDM designs involved decisional supports about whether to remain at home or move to a LTC setting (Garvelink et al., 2016;Granbom et al., 2020;Légaré et al., Légaré et al., 2015. This integrated both relocation and ageing in place as choices allowing users to weigh-up the benefits and drawbacks personalised to their individual situation. Collaboration between the older adult, family caregivers and healthcare professionals working together to support decisionmaking during transitioning to LTC was identified as fundamental to facilitate SDM (Groenvynck et al., 2021;Hillcoat-Nallétamby & Sandani, 2019;Lord et al., 2016). Such partnerships aim to crystalise decisions, exchange information, elicit preferences and their feasibility which is reflective of the IP-SDM model (Légaré et al., 2014).
However, the evidence on professionals supporting SDM during transitioning is not consistent, Légaré et al. (2014) caregivers' did not experience IP-SDM when deciding to relocate a family member to LTC with decisions tinged with pressure and a lack of interprofessional support noting a lack of collaboration between the person, their caregivers and homecare professionals.

| Barriers to SDM during transitions to LTC
The papers identified consistent barriers namely a lack of inclusion of the person and disparities between the persons' wishes and the availability of resources (Garvelink et al., 2019;Légaré et al., 2014;Lord et al., 2016). A recurring narrative was that adults did not feel involved and supported in decision-making with family members often making the decision (Garvelink et al., 2019;Lord et al., 2016).
Conversely, family caregivers were aware that they were excluding the person; however, they felt the situation necessitated a move which the person lacked insight or did not want to acknowledge (Garvelink et al., 2019;Lord et al., 2016). In Canada, Légaré et al. (2014) explored this phenomenon focusing on family caregivers with participants reporting a lack of IP-SDM whereby their values, preferences and that of their family members were difficult to reconcile into shared decisions. Caregivers' highlighted a lack of information and options, noting that the availability of resources and time strongly influenced decision-making (Légaré et al., 2014). Similarly, Garvelink et al. (2019) reported that as cognitive capability declined due to dementia the person's involvement in decision-making decreased as SDM was strongly influenced by cognitive functioning.
Furthermore, a transitional decision became more likely and family caregivers became more involved with cognitive decline (Lord et al., 2016;Garvelink et al., 2019). Individual family circumstances, practicalities and feelings of stress among caregivers were identified as further barriers which influenced their willingness and motivation to continue caring or engage in SDM (Garvelink et al., 2019;Lord et al., 2016).
The papers have identified the complicated nature of such decision-making identifying that a stand-alone decisional aid may be of limited value compared to multi-pronged interventions (Garvelink et al., 2016;Lord et al., 2016). Approaches which involve professionals and counselling support to complement such decisional aids (Groenvynck et al., 2021;Lord et al., 2016;Hillcoat-Nalletamby & Sandari, 2019) were valued noting the importance of human contact.
Furthermore, concerns were identified regarding web-based designs for adults who were not proficient with technology and the Internet (Granbom et al., 2020;Mukamel et al., 2016).
A schematic of the barriers, facilitators and requirements to facilitate SDM with adults transitioning to LTC is presented in Figure 2.  (Elwyn et al., 2013;McCafferty et al., 2011;Scholl et al., 2018). Indeed, several of the barriers to SDM identified in this review such as inadequate resources require macrolevel strategies to address. Despite the growing body of evidence, there continues to be limited engagement at governmental and policy level.

| DISCUSS ION
The review identified several challenges to SDM during transitions including a lack of inclusion of the person especially in the context of declining cognitive capability. Caregivers were aware that the situation necessitated a move with which the person with dementia disagreed (Lord et al., 2016). Moreover, if the person with dementia has a negative view of LTC placement caregivers may feel compelled to make the necessary decisions without them (Ducharme et al., 2012;Miller et al., 2016). Such challenges may result in caregivers going against their values and preferences causing dissonance. Koenig et al. (2014) identified both congruent and dissonant narratives between older adult and their caregivers when examining their joint experience of this transitional process. Furthermore, cultural traditions such as filial piety (Chen, 2015) may present additional challenges to decision-making and by association efforts to engage in SDM approaches.
In practice settings, the appropriateness and timing of such interventions to support decision-making must be critically evaluated by nurses and other professionals on a case-by-case basis cognizant of challenges which individuals and their families may experience.
It is questionable whether existing SDM models and interventions are suitable to facilitate decision-making from this perspective. In effect differing perspectives reflect the nuanced and varied challenges which SDM presents across different specialities and individual circumstances (Kalsi et al., 2019). There are also resource and economic implications for integrating these interventions into practice including adequate access to actual or alternative healthcare services to put SDM into practice (Gravel et al., 2006).

| Gaps and future research recommendations
The PAGER framework highlights several gaps and future research recommendations. Légaré et al. (2015; proposed measuring the proportion of older adults who report an active role in decisionmaking about whether they remain at home or move to a LTC facility.
At the time of this review, the author is not aware of any published papers evaluating older adults experiences. Such evidence on the effect of IP-SDM is important to inform future research while identifying contextual factors which impact effectiveness among different cohorts of adults. There is a lack of diversity among the sampling strategies employed with a paucity of evidence relating to other younger cohorts who may also become involved in a transitional decision.
The literature review has identified the need for longitudinal and qualitative research into IP-SDM. Concerns regarding webbased designs for adults who are not proficient with technology were identified (Granbom et al., 2020;Mukamel et al., 2016).
There is a risk that a considerable number of eligible populations would be excluded from these interventions. Therefore, there is a need to address the acceptability and useability of interventions among populations.
A future systematic review when there is sufficient evidence from interventional papers is recommended to evaluate the effectiveness of interventions. There is also a need to agree core standardised outcome measures at patient, carer, professional and organisational level to allow comparison and meta-analysis.

| Evidence for practice
In consideration of the predicted increase in health and social care staff who will be supporting society (OECD, 2022) Stacey et al., 2014).

| Strengths/limitations
A strength of the design is the adherence to a systematic and replicable framework to evidence sourcing, selection, extraction and analysis following the PRISMA extension of scoping reviews framework (Peters et al., 2020). The application of the PAGER framework

ACK N OWLED G EM ENT
Open access funding provided by IReL.

CO N FLI C T O F I NTE R E S T
The author(s) declare none.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available in the supplementary material of this article.