Capturing Potential Interventions for the Empowerment of Older People and Informal Caregivers in Transitional Care Decision‐Making: A Qualitative Study Using Focus Groups

ABSTRACT

Aim

To capture older people's, informal caregivers' and health professionals' ideas on potential interventions for empowering older people and informal caregivers in transitional care decision‐making.

Design

A descriptive qualitative design was adopted.

Methods

The study was conducted between February and May 2022 in the region of Flanders, Belgium, as part of the TRANS‐SENIOR consortium's collaborative research. Data were collected using focus groups, including older people, informal caregivers and healthcare professionals involved in any physical relocation of the older person across home, hospital or nursing home settings. Thematic data analysis was performed based on Braun and Clarke's six‐step method.

Results

A total of 40 people participated in the focus groups. Four main themes were identified, which describe ideas on how to empower older people and informal caregivers in transitional care: Providing clear and timely information, preparing people for what is to come, person‐centredness and providing professional and peer support for informal caregivers.

Conclusions

Healthcare (professionals) should facilitate older people's and informal caregivers' empowerment in transitional care decision‐making by setting them at the core and inception of the decision‐making process. While informal caregivers support their loved ones in decision‐making processes, they should also be supported and monitored for burdensome issues.

Implications to Patient Care

Multicomponent, well‐planned and personalised interventions are needed to empower older people and informal caregivers in transitional care decision‐making. The ideas raised by all stakeholders who participated in this study can inform these interventions.

Reporting Method

Adhered to consolidated criteria for reporting qualitative research checklist.

Patient or Public Contribution

Organisations advocating for the interests of older people and informal caregivers played a pivotal role in shaping the TRANS SENIOR project. Furthermore, the study benefitted from the collaborative input of AGE Platform Europe, which amplified the voices and representation of older people during the project design phase.

Summary.

• This paper provides a multiperspective insight into how to empower older people and informal caregivers in transitional care decision‐making.

• Older people and informal caregivers wish for multicomponent interventions for their empowerment in transitional care decision‐making, emphasising a person‐centred care approach.

• Advance planning and timely information provision are essential to enable empowerment in transitional care decision‐making and should be done proactively by healthcare professionals.

1. Introduction

The world population aged 65 and older is projected to double to 1.5 billion between 2019 and 2050 (United Nations, Department of Economic and Social Affairs, Population Division ²⁰²⁰). While science, technology and medicine—the modern drivers of longevity—enable people to live longer and with chronic disease, disabilities, multimorbidity and frailties (Harper 2014), the demand for complex healthcare services is increasing, and healthcare systems struggle to provide optimal care (European Commission Directorate‐General for Employment, Social Affairs and Inclusion ²⁰²¹; Ricciardi, Specchia, and Marino ²⁰¹⁴).

As not all services can be provided at home or in a single specialised care setting, the number of older people needing care across various care settings, and thus transitions between these settings, is also expected to increase (Hirschman et al. 2015; Naylor and Keating ²⁰⁰⁸). Research shows that transitions across care settings are often poorly managed and can lead to adverse effects such as poor health outcomes, incorrect treatment (Tam et al. 2005), medication errors (Tam et al. 2005; Boockvar et al. ²⁰⁰⁴), failure to follow‐up on procedures (Laugaland, Aase, and Barach ²⁰¹²) and even mortality (Ferrah et al. 2018). Therefore, transitional care is needed to ensure beneficial care transitions.

The American Geriatrics Society defines transitional care as ‘a set of actions designed to ensure the coordination and continuity of healthcare as patients transfer between different locations or levels of care within the same location’ (Coleman and Boult 2003). In the last few decades, several interventions have been developed, implemented and evaluated to improve transitional care [e.g., the Transitional Care Model (Hirschman et al. 2015)] for older people and their informal caregivers (people caring for their partner, a family member, a neighbour or a friend on a regular and voluntary basis in the context of illness, disability, [psychological] frailty or an addiction) (Coponcho 2024).

Although transitional care interventions can improve care processes, they and related research do not always place older people's and informal caregivers' decision‐making central. This study focused on older people's and informal caregivers' empowerment in transitional care decision‐making.

2. Background

Recent research on older people's and informal caregivers' experiences, views and needs in transitional care decision‐making signalled how people struggle with such decision‐making (Kraun, Van Achterberg, et al. ²⁰²³; Kraun et al. ²⁰²²). These decision‐making processes can vary between, but are not limited to, questions and doubts regarding the reasoning for a transition, the possible destination, the timing and how the transition is managed. A recent systematic review (Kraun et al. 2022) reported on older people's feelings of reduced autonomy when transitioning from home to another care setting or vice versa. The review also highlighted increased dependency, confusion and a clear need for information when at the time of transitional care decision‐making. The review further clarified that while informal caregivers did their best to support their loved ones in transitional care decisions, they also felt the burden of responsibility and wished for support (Kraun et al. 2022). Furthermore, research reports that older people's and informal caregivers' levels of involvement in transitional care decision‐making processes range from minimal to high involvement (Nilsen et al. 2022; Johnson and Bibbo ²⁰¹⁴), which implies that older people's and informal caregivers’ needs for support can also vary (Allen et al. 2022; Ingvarsson et al. ²⁰²⁴). This variable level of involvement could depend on persons' individual preferences, health condition, (in)formal care availability and the specific care transition pathway (e.g., the experience of transitioning from home to hospital with a plan to return home differs from the experience of a transition to a long‐term care setting without the prospect of returning) (Kraun, Van Achterberg, et al. ²⁰²³).

To improve older people's and informal caregivers' experience in transitional care decision‐making (when transitioning from home to another care setting or vice versa), recent studies indicated the need for interventions that can empower older people and informal caregivers in such decision‐making (Kraun, Van Achterberg, et al. ²⁰²³; Kraun et al. ²⁰²²). According to Castro and others, empowerment at the individual level is ‘a process that enables patients to exert more influence over their individual health by increasing their capacities to gain more control over issues they themselves define as important’ (Castro et al. 2016). This definition emphasises the importance of striving for the level of involvement in decisions and the level of control over their health and well‐being that people themselves desire. In this scope, a recent systematic review focusing on older people's and informal caregivers' empowerment interventions in transitional care decision‐making (Kraun, De Vliegher, et al. ²⁰²³) reported on intervention outcomes such as unplanned hospitalisations, quality of transition preparations, posttransition quality of life or the perceived utility of transition preparation tools. However, this review also found that the extent to which people themselves feel empowered to make decisions, is not an outcome within the focus of studies on empowerment for making transitional care decisions. Therefore, how to empower older people and informal caregivers in transitional care decision‐making remains unclear.

In conclusion, there is a need for more insight into how to empower older people and informal caregivers in transitional care decision‐making. Therefore, this study aims to capture older people's, informal caregivers' and health professionals' ideas for interventions that can empower older people and informal caregivers in transitional care decision‐making.

3. Methods

3.1. Design

In this descriptive qualitative study, focus groups were used to capture older people's, informal caregivers' and healthcare professionals' ideas on potential interventions for empowering older people and informal caregivers in transitional care decision‐making.

3.2. Setting and Sample

3.2.1. Setting

The focus groups were conducted in the Flemish region of Belgium. The Belgian healthcare system is built on compulsory health insurance, providing all residents with universal coverage for essential acute and long‐term care. Within this system, insurance packages can vary in the exact services they cover (e.g., basic or more expensive dental care, single room when in hospital), and some patient fees are installed to discourage overconsumption (e.g., patients pay 4 Euros for every consultation with their family doctor). Long‐term care can be offered in the community, in residential care facilities and by both nonprofit and commercial parties, and costs can vary considerably. Informal caregivers have a substantial contribution to the care of older people. With 76% of all men and 68.3% of all women between the ages of 20 and 64 being employed (STATBEL ²⁰²⁴), there are limits to the availability of informal caregivers. Moreover, in the light of increased life expectancy, increasing numbers of informal caregivers are now older people themselves.

3.2.2. Sample

A purposive sampling approach was used. We looked for older people, informal caregivers and healthcare professionals with experience in alternative care transitions and transitional care decision‐making to guarantee insights based on a multisetting and multiperspective approach. This participant triangulation allows for rich input on how the empowerment of older people and informal caregivers could be achieved. While older people and informal caregivers could reflect on what they would need, healthcare professionals could reflect on what they could do to support older people and informal caregivers.

For all participant groups, we strived for gender diversity. We strived to include older people who faced alternative care transitions (pathways) with diverse living arrangements and levels of dependency in activities of daily living (ADL) and informal caregivers whose loved ones faced alternative care transitions. The healthcare professionals we looked for had to represent different disciplines and settings, a variation in seniority and diverse expertise.

3.2.3. Inclusion and Exclusion Criteria

The inclusion criteria were being involved in care transitions (any physical relocation of an older person across home care, hospital or nursing home settings) in the 12 months prior to the focus group sessions and being able to speak Dutch fluently. Older people had to be 65 years of age or older. Informal caregivers could be, but were not necessarily related to, the older people who participated in the study. Healthcare professionals had to have at least 1 year of work experience.

Older people and informal caregivers were excluded if they had cognitive impairment as judged by a health professional.

3.3. Recruitment Procedure

Participants were recruited in collaboration with an organisation for home care (that provides care at people's homes), two public nursing homes and representatives of the TRANS‐SENIOR network in Belgium.

3.3.1. Older People

In the home care setting, eligible older people were contacted by the nursing directors and the head nurses of the home care organisation using an information letter provided by the research team. Candidates were contacted using the telephone or during a physical or online meeting. In the two nursing homes, eligible older people were approached by either the care director or the social worker using the same information letter provided by the research team.

3.3.2. Informal Caregivers

In the home care setting, eligible older people were contacted by the nursing directors and the head nurses using an information letter provided by the research team. Candidates were contacted using the telephone, or during a physical or online meeting. The informal caregivers were always involved in the care for one or more of the organisation's clients. In the two nursing homes, eligible informal caregivers were approached by either the care director or the social worker by telephone, followed by an information letter provided by the research team.

3.3.3. Healthcare Professionals

For the focus group with healthcare professionals, nursing directors and head nurses of the home care organisation and the care director or the social worker in the nursing homes approached eligible participants using the information letter provided by the research team. Using an information letter, the researchers contacted hospital‐based healthcare professionals in geriatric departments via the TRANS‐SENIOR Belgian network.

All eligible participants received an oral and written explanation of the study's rationale and aims and were asked to sign an informed consent form before attending the focus group.

3.4. Data Collection

Considering the researcher's previous experiences with comparable data collection and the complex nature of the subject, the focus group methodology was chosen to encourage participants to identify and refine their ideas throughout an interactive discussion by, for instance, commenting, reflecting, explaining and sharing their views. We aimed to conduct eight focus groups: three with older people, three with informal caregivers and two with healthcare professionals. Based on our previous experience with interviews in relation to care for older people, healthcare professionals relatively easily bring ideas to the table when discussing how care could be improved. We, therefore, assumed that two focus groups would be enough to obtain a degree of data saturation. As generating ideas on future support or care is often less easy for older people and their informal caregivers, we aimed for three focus groups for these participants. Ideally, a focus group consists of a minimum of four and a maximum of 12 participants: small enough so that everybody can interact and big enough to obtain diversity in perceptions (Carlsen and Glenton 2011). In this study, we aimed to have approximately eight participants per focus group to ensure interactive discussions while also considering the possibility of a few people dropping out.

By planning for more than one focus group for each type of participant group, we hoped to be able to assess a degree of data saturation by checking to which extent the later focus groups added new information (Saunders et al. 2018).

The focus groups were organised separately for each participant group (older people, informal caregivers and healthcare professionals) to enable participants to express their ideas openly, without any influence or pressure from the other groups. This choice was also informed by the researchers' prior experience with similar populations, where mixing the groups prevented open discussions as older people and informal caregivers were sometimes hesitant to speak up with healthcare professionals present, and where older people and informal caregivers could be hesitant to share their honest views when these views might hurt the other party's feelings.

Three focus group guides (one for older people, one for informal caregivers and one for healthcare professionals) were developed based on international and national literature on older people's and informal caregivers' experience with, and empowerment in transitional care decision‐making. To capture and understand older people's and informal caregivers' ideas regarding possible interventions for greater empowerment in transitional care decision‐making, the guides for the focus group included topics about participants' roles in transitional care decision‐making, feelings of control and support in relation to the decision‐making and ideas on what could be done to empower older people and informal caregivers in making transitional care decisions (see questions in Appendix S1).

Four researchers, all holding advanced academic degrees, organised and/or conducted the focus groups as part of the TRANS‐SENIOR project. Among them, two were females and two were males. The researchers had prior experience in research in transitional care decision‐making and care for older people and expertise in qualitative research methodologies. The researchers did not know the participants in advance. Before enrolling in the study, participants received an information letter explaining the study framework, aims, the researcher's names and affiliations. Then, on the focus group day, the researchers presented themselves in detail.

The focus groups were conducted from February 2022 to May 2022. The focus groups with older people took place in meeting rooms in two different nursing homes, and the same applied for two focus groups with informal caregivers. A third focus group with informal caregivers occurred in a meeting room at the community nursing organisation. The focus groups with healthcare professionals took place online using the Teams app.

The focus groups were recorded and transcribed verbatim.

3.5. Data Analysis

Inductive thematic analysis, based on the methodology outlined by Braun and Clarke (2006), was performed by three of the researchers. The data were analysed without a predefined framework, focusing instead on extracting and understanding potential interventions for empowering older people and informal caregivers in transitional care decision‐making. We used a triangulation approach in our analysis by combining the data from the different types of participants. The analysis process began with familiarising with the transcribed verbatim data. The researchers read and reread the data and highlighted fragments that were relevant to the research aim. Next, to generate initial messages and ideas, relevant fragments were summarised into main ideas. Nonhierarchical preliminary codes were listed based on the initial messages and ideas and linked to the relevant fragments to optimise the coding list. Afterwards, codes were analysed across the focus group data and clustered into themes by creating a thematic map using Excel tables. Subsequently, all themes were integrated into a conceptual structure to define and name the themes. Last, a report and final confirmation of the themes concerning the research purpose and the data obtained were produced. The data analysis process, including the final confirmation step, involved the researchers revisiting and confirming each phase separately and in together. This was done to ensure rigour and reflexivity throughout the analysis.

At the end of the analysis, two researchers met with a few older people and informal caregivers who participated in the focus groups and reported on the preliminary findings. At this meeting, older people and informal caregivers reflected on the preliminary findings, but these reflections confirmed what was in the transcripts and did not lead to additional information.

3.6. Ethics

This study was approved by the University Hospital of Leuven's Medical Ethics Committee on 30 November 2021 (protocol number S65680). All participants provided written informed consent. The option of withdrawing from the study at any time and without any negative consequences was stressed to all participants.

4. Results

4.1. Participants

In the focus groups, older people, informal caregivers and health professionals discussed ideas for potential interventions that might empower older people and informal caregivers in transitional care decision‐making, based on their lived experiences with care transitions. Out of the eight planned focus groups, we could conduct seven focus groups: two with older people, three with informal caregivers and two with healthcare professionals.

Four of the 44 participants who confirmed participation did not attend the focus groups at the last minute due to scheduling reasons. The focus groups, thus, included a total of 40 participants. Twelve participants were older people with a mean age of 86; four were females and eight were males. Three older people moved from home to a hospital and then to a nursing home, seven made the transition from home to a nursing home and two older people made the transition from home to an assisted living facility and then to a nursing home. The 13 informal caregivers had a mean age of 64; four were males and nine were females. The 15 healthcare professionals from different settings were 10 nurses, two social workers, two physicians and one physiotherapist; nine were females and six were males (see Table 1). The focus groups had an average duration of 94 min (ranging from 59 to 118 min).

TABLE 1.

Overview of focus groups (n = 7) and characteristics of participants (n = 40).

Focus group number	1	2	3	4	5	6	7
Target group	Older people	Older people	Informal caregivers	Informal caregivers	Informal caregivers	Healthcare professionals	Healthcare professionals
Number of participants	6	6	3	6	4	7	8
Age (min–max)	82–98	61–97 a	60–68	56–76	66–72	—	—
Females/males	2/4	2/4	2/1	5/1	2/2	4/3	5/3
Educational range (min–max)	Elementary school—bachelor's degree	Elementary school—bachelor's degree	Elementary school—bachelor's degree	Secondary school—master's degree	Secondary school—master's degree	Bachelor's degree—PhD	Bachelor's degree—PhD
Living arrangement	6 permanent nursing home residents	6 permanent nursing home residents	—	—	—	—	—
Relation to older person	—	—	2 partners, 1 daughter‐in‐law	4 daughters, 1 wife, 1 son	1 son, 1 son‐in‐law, 1 daughter, 1 representative b	—	—
Healthcare disciplines	—	—	—	—	—	Nursing, social work, medical doctor	Nursing, social work, medical doctor

^a At the time of the meeting, it turned out that a person was younger than 65 (i.e., 61). In light of recruitment challenges, but mainly because of the relevance and richness of the information given by this participant, the research team decided to include the person in the analysis.

^b One of the participants was not an active informal caregiver, but was a representative for informal caregivers. The research team decided to include this volunteer as the person was in touch with many informal caregivers and had significant knowledge and insights.

Data saturation was reached for the focus groups with older people, informal caregivers and healthcare professionals, as evidenced by the repetition of ideas in the last focus groups.

4.2. Results From the Focus Groups

Older people, informal caregivers and healthcare professionals shared their ideas on how to empower older people and informal caregivers in transitional care decision‐making. Data indicated four main themes: Providing clear and timely information, preparing people for what is to come, person‐centredness and providing professional and peer support for informal caregivers (see Figure 1).

FIGURE 1.

Potential interventions for the empowerment of older people and informal caregivers in transitional care decision‐making. The data indicated four main themes: Providing clear and timely information, preparing people for what is to come, person‐centredness, and providing professional and peer support for informal caregivers.

4.3. Providing Clear and Timely Information

Older people, informal caregivers and healthcare professionals perceived information as a key element for empowering older people and informal caregivers in transitional care decision‐making.

Based on their experience and understanding, participants in all focus groups proposed that healthcare professionals should pay more attention to clearly explaining medical terms and care options so older people and informal caregivers can easily comprehend them. Furthermore, older people and informal caregivers underlined the need for timely information provision. The importance of being timely informed relates to their wish to consider future possibilities.

An informal caregiver that her father moved from home to a nursing home said:

“Giving time and information to people early enough to ‘think about the future’. Euhm, I do think that is an important one.” (Informal caregiver)

To provide timely information, informal caregivers found it important to have a user‐friendly, accessible platform offering a real‐time overview of the available long‐term care facilities (e.g., nursing home). This way, they and their loved ones could access timely information via a platform instead of contacting numerous care facilities.

An informal caregiver who his loved one's transition to a nursing home struggles to access care available options:

Yes, you have to find out about the possibilities and alternatives yourself. If indeed someone were to say, ‘Those are the possibilities; those are the alternatives’, that would certainly help. Because now you must look for yourself, what are the possibilities? (Informal caregiver)

Beyond real‐time information about facilities and their availability, a nurse working in a nursing home proposed to look into how an independent in‐person information service desk for older people and informal caregivers could allow people to ask questions and get verbal and written information and advice (e.g., navigation in the system) regarding their upcoming transition.

A home care nurse specialised in care transitions from home elsewhere, and vice versa proposed:

Euhm, you can explain several things casually, listen to, explain, and outline possibilities. …and perhaps that is a tip, which I am also in favour of and which already exists in certain parts of the country, namely a care desk where people can register with a problem and that from the care counter there is a sort of allocation of who is best to visit, is it someone from home care, is it someone from the mutuality, is it someone from a residential facility or are they several people together in such a way that people do not feel obliged when they call on that agency either for information. (Nurse)

An additional idea of how to empower people through information provision was raised by a general practitioner who proposed to give older people access to their electronic patient records to read the professionals' summaries and recommendations and get insight into their care plans. Moreover, the general practitioner proposed designating a specific section in the medical record where older people could share their insights and experiences. This access was seen as pivotal to encouraging information exchange between older people, informal caregivers and healthcare professionals. Also, it was proposed that general practitioners initiate a conversation concerning transitional care, possibilities and reflections.

So please give the patient the maturity to be able to write in his own file. To keep his will there, to keep it up to date. (…) and maybe leave it up to the general practitioner to start the discussion with the patient (…) keep it up to date. (General practitioner)

4.4. Preparing People for What is to Come

Based on their experiences, older people, informal caregivers and healthcare professionals highlighted the importance of being adequately prepared for upcoming or necessary transitions and proposed different ideas for improvement. These ideas referred to things that could be done before or after the need for care transition is fully clear.

4.4.1. Before the Need for a Care Transition is Fully Clear

Frequent conversations on future care were proposed by healthcare professionals, to allow people to prepare for what is to come before a specific need for a care transition would become imminent. This way, they could encourage older people (and their informal caregivers) to think about their needs and wishes in the scope of their own (advance) care planning and thus build the foundation for future mutual decision‐making processes. For instance, a home care nurse proposed that healthcare professionals use routine appointments or incidents (e.g., a fall) to discuss future care and suitable possibilities with older people and informal caregivers.

A home care nurse specialising in transitions and regularly visits hospitals to coordinate discharge for older people said:

I think that if some acute things happen regularly in the short term, such as falls, and then they stay at home for a while, and if that piles up, or if, for example, someone is admitted to hospital twice in one month… people are not on a waiting list [for a place in a nursing home]; they are unknown there, yet they are expected to find a place quickly… how can we prevent that? Yes, by talking to the patient and the informal carer, for example, after the first fall, if I take it as an example for now. (Nurse)

With a view to what is to come and future age‐health‐related uncertainty, older people proposed a prearranging legal consultation to discuss their wishes concerning advance care planning before a specific need for a care transition would occur. Older people said that it could solve future problems if one would, for instance, prearrange for a legal representative in case of severe deterioration. It could reduce informal caregivers' burden through such clarity and give older people more time to consider the possibility of moving and expressing their (future) needs and wishes.

An older person who moved from home to an assisted living facility and then to a nursing home shared:

Making decisions, yes. That's one. Secondly, the legal aspect is another thing. It is important to think about appointing someone as your attorney over your accounts. If you get to the point that an administrator has to be appointed for your affairs, then every year, you have to go to court, and reports have to be made about all the decisions that are taken and about all transfers of money. When the children have power of attorney then everything is legally arranged and easier to manage. So, that's one burden less for the informal caregiver. And the older person has to make that decision with a clear mind, and with the children. (Older person)

To further improve preparation for what is to come before a known need for a care transition, healthcare professionals suggested introducing a screening or assessment tool for people at high risk for a transition of care (e.g., those above a certain age or after a fall). Based on the screening scores, advance care planning can be started with the older person and the informal caregiver.

4.4.2. Once the Need for a Care Transition is Clear

An idea for intervention that could empower people in transitional care decision‐making in case of a potential move to a long‐term care facility was to offer the older person and the informal caregiver the option of visiting potential care settings (e.g., nursing homes). Older people and informal caregivers explained that these visits should happen in advance and not suddenly when the decision becomes urgent. Based on an older person's and an informal caregiver's experience, the previsit could help in making a decision, as emphasised by an older person who moved from home to a nursing home:

With walking in… there was no question of joining hé. I say fantastic hé. I say ‘but that is something for me’, I say to my girlfriend. And that is how it went. (Older person)

An informal caregiver said:

But in (place X), we also went to see a room, but it was a bit outdated, and we had the feeling that ‘no, we are not going to put her here’. (Informal caregiver)

If older people and their loved ones could not visit the long‐term care facility, healthcare professionals proposed that they would visit older people, considering long‐term care options. They explained how they could explore the option of staff visiting older people and their informal caregivers at home (upon request) to have conversations on alternative options. The professionals believed that such visits would increase their understanding of the home situation and that such care visits would also allow them to observe nonverbal communication between the older person and the informal caregiver(s). Furthermore, participants stated that such home visits could enable older people to discuss matters while in their comfort zone. Finally, the home visits were proposed as a facilitator for open (and less stressful) conversations and needs assessments.

An informal caregiver proposed allowing a trial period in potential care settings (e.g., nursing homes). It was explained that in this way, older people could be able to live in a long‐term care facility for a couple of months, which could help them decide if they wanted to stay there or not.

An informal caregiver involved in a transition from home to a hospital to a nursing home suggested:

…to include a trial period. And usually it is so that they [older people] then experience, ‘I like it here’. I experienced this with my uncle. He absolutely did not want to go to a nursing home. And then we said yes, it's no longer possible, you can't go back [from the hospital…] to your service flat. And then he says I'm going to try for fourteen days. And after fourteen days he said that he would like to stay, because he liked it here. (Informal caregiver)

4.5. Person‐Centredness

Participants in this study stated that person‐centeredness was an essential element of empowerment in transitional care decision‐making. This involves recognising each person with unique characteristics and needs, which is crucial when addressing transitional care decisions. Building and maintaining a person‐centred dialogue between older people and healthcare professionals and organising a person‐centred multidisciplinary meeting with the older persons and/or their informal caregiver were proposed to enhance person‐centeredness. Based on their experiences, healthcare professionals proposed building and maintaining long‐term relationships and a continuous person‐centred dialogue with older people, even when an immediate care transition is unnecessary or cannot even be offered. According to the professionals, personal values and concerns should be discussed in such a continuous dialogue, not just medical treatment decisions. They believed that this way, older people would gain knowledge and be aware of the possibility of expressing their opinions and being involved in a way that matches their goals, preferences, wishes and capacities.

…building the relationship will always be a priority, and the trust that you get from people will remain a priority. Um, to get on track with their concrete needs and requirements. (General practitioner)

Furthermore, healthcare professionals added the need to consider the personal context by looking into the older person's personal characteristics, home situation, history, family and emotional experiences in decision‐making. All this needs to occur even while ensuring that the care arrangements would fit older people's and informal caregivers' lives and values.

A nurse who works in the home care setting shared her efforts in this regard:

…I try to make people somewhat aware of situations by just naming them because you can have something towards your patient after a while. You can give your opinion; the patient has his own opinion, so I think you create a bit of support, and then the family caregiver can jump on the same train and then yes, if the older person is admitted to a hospital or something like that then the foundation is there for the hospital to build on. (Nurse)

From the informal caregiver's point of view, it was important to have a multidisciplinary meeting and both the presence and participation of the older people and informal caregivers. They explained that older people and their needs, feelings and wishes should be the starting point for such meetings.

An informal caregiver who supported his parent with the move to a nursing home explained:

I think for many family caregivers who have to have someone go to a retirement home, it is also very emotionally involved. And that is why I think it is important that you first come together like this, now from the home care, with all the different players that have been around it. (Informal caregiver)

4.6. Providing Professional and Peer Support for Informal Caregivers

Healthcare professionals, older people and informal caregivers all referred to the importance of professional and peer support before and during a care transition. They proposed ideas for interventions that could empower informal caregivers in transitional care decision‐making: appointing a care mediator, assessing informal caregivers' level of burden and providing mental peer support for informal caregivers.

From the healthcare professional's point of view and that of informal caregivers, a care mediator should be appointed to support and guide them (along with their loved ones). Participants discussed that such support should include an overview across settings, offering an active follow‐up, consultation on decision‐making and discussing with family members to discover their mutual and individual wishes and capacities in delivering aid. A social worker with experience working with informal caregivers proposed:

It is a good thing that at some point anyway before the decision is made, or if the decision is very difficult, that a care mediator comes into that family, who can actually consult with the children saying look, everybody gives the help they can give and wish to give. (Social worker)

In addition, it was proposed that peer support groups for informal caregivers be established. Participants recommended that in such groups, informal caregivers could share information and learn from each other's experiences. Participants believed that, as a result, informal caregivers might be able to better cope with the burden and the dilemmas that come with the need to make transitional care decisions.

…Yes, maybe that is also an aspect for discussion groups to bring up. Talking groups. (Informal caregiver)

To provide mental support for informal caregivers, a home care nurse offered an idea to provide tailored mental health support by measuring the level of burden of informal caregivers. This proposed assessment is based on an existing pilot that adopted a 1–10 burden score. Informal caregivers would be asked questions relating to their loved one's pathology (dementia, multiple sclerosis, cancer, etc.) and about their level of stress, responsibilities and burden.

A home care nurse who is also working on a project in this regard proposed:

So I am now consulting with [Name] hospital, for example, in the clinical pathway dementia to get that informal care score there, so where that one says like: ‘I am going to take care of my wife with dementia’. And the hospital further keeps in touch with me by contacting me once a month, euh, and saying, ‘Yes, how is it now with your courage, with your courage, with your bearing?’ Euh, on a scale of 1 to 10, right? You got that from the hospital; where are you now? And if that evolves, they do something there somewhere to overcome that, right? ‘What makes it so difficult for you now?’ (Nurse)

In summary, the focus group findings highlight four key themes for potentially enhancing older people's and informal caregivers' empowerment in transitional care, emphasising the importance of providing clear and timely information, preparing people for what is to come, person‐centredness and providing professional and peer support for informal caregivers.

5. Discussion

This study aimed to capture older people's, informal caregivers' and health professionals' ideas relating to potential interventions for empowering older people and informal caregivers in transitional care decision‐making. Four themes across potential interventions were captured: Providing clear and timely information, preparing people for what is to come, person‐centredness and providing professional and peer support for informal caregivers.

Participants in this study found clear and timely information essential for empowerment in transitional care decision‐making. This finding, aligned with previous qualitative studies, highlights the importance of effectively providing information to older people and their informal caregivers to enable informed decision‐making regarding care transitions (Kraun, Van Achterberg, et al. ²⁰²³; Kraun et al. ²⁰²²). However, our findings offer additional ideas to enhance decision‐making processes. We believe that the related ideas in this theme (enabling an interface to check long‐term care availability in real‐time, an in‐person information service desk, access to the medical records and designating a specific section in the medical record where older people can add their experience and the transition) could enrich the TRANCIT model, proposed by Groenvynck et al. (2021). This model presents three phases in transitional care (the pretransition, mid‐transition and posttransition phase) and advises on developing and evaluating (future) transitional care interventions. We believe that the intervention ideas proposed in our study can enrich the model's pretransition phase component and contribute to more of an operational meaning. Further, in our study, participants provided ideas related to two points in time to prepare people for what is to come: Before the need for a care transition is fully clear (e.g., ideas: frequent conversations, legal consultation, screening or assessment tool for people at high risk), and once the need for a care transition is clear (e.g., ideas: visiting potential care settings on being visited at home). These findings emphasise persons' need to be ready for a transition when it occurs and the importance of considering it in advance. As reported in other literature and practice, the idea of visiting a nursing home or having a trial period is known in practice (Groenvynck et al. 2021; Sussman and Dupuis ^{2012, 2014}). In contrast, we believe that our findings add an idea of using routine care appointments to discuss a future scenario of transition decisions while building the foundation for the future. Also, having a legal consultation in advance become more common among ageing people, but not in transitional care, which our findings suggest.

Concerning the person‐centredness approach in transitional care, the need for a personalised approach resembles the person‐centredness approach addressed in the transitional care model (Hirschman et al. 2015), which suggests that professionals adopt a holistic and person‐centred approach and that relationships with older people and their informal caregivers must be maintained. Also, our findings regarding person‐centredness resemble Groenvynck et al.'s scoping review on interventions to improve the transition from home to a nursing home (Groenvynck et al. 2022). However, in their scoping review, Groenvynck et al. reported that most person‐centred interventions failed to report how they tailored their intervention. Our study can provide practical person‐centred ideas to tailor transitional care interventions and focus on decision‐making processes (e.g., continuous dialogue and multidisciplinary meetings that include care recipients). Building and maintaining a person‐centred dialogue between older people and healthcare professionals can be seen as a preposition for shared decision‐making intervention. In their scoping review on shared decision‐making with adults transitioning to long‐term care, Egan et al. (2023) concluded that there is a need for partnership and person‐centred approaches to optimise care transitions. Our study adds that partnership and person‐centredness can be reached through a well‐maintained ongoing dialogue that focuses on the future and not only on decisions to be made in the here and now. This links to the need to consider advance care planning interventions, which include shared decision‐making techniques. However, it should be noted that advance care planning is often only associated with terminal care and that people do not automatically consider this for long‐term care. Also, openness to advance care planning may be cultural and more or less taboo in some subpopulations. Regarding multidisciplinary meetings that include care recipients as proposed in this study, this result also resembles the findings of the Egan et al. scoping review (Egan et al. 2023), which underlined the need for collaboration between the older person, family caregivers and healthcare professionals to support (shared) decision‐making during the gradual transition to long‐term care.

Furthermore, the participants in this study raised ideas to provide professional and peer support for informal caregivers. This mirrors the results in the qualitative study of Brooks et al., which reports on needs for both professional and peer support needs in spouse‐caregivers of persons with dementia (Brooks et al. 2022). In our study, participants proposed appointing a care mediator, assessing informal caregivers' level of burden and providing mental peer support. Such prepositions also align with caregivers' reported need for multisupport sources when going through care transitions (Biliunaite et al. 2022; Greenwood et al. ²⁰¹³; Mitchell et al. ²⁰²⁴).

This study shows that healthcare professionals play a central role in the empowerment of older people and informal caregivers at the time of transitional care decisions. Most ideas for proposed interventions for such empowerment rely on healthcare professionals' efforts, competencies and healthcare systems' resources. With each of the four reported themes, participants elaborated on what healthcare professionals should deliver or what healthcare systems should arrange. Only a minority of the ideas for interventions implied proactive actions that older people or their informal caregivers should have to initiate. Based on our results, however, this dominant focus on what healthcare (professionals) could do does not imply that older people and informal caregivers do not wish to be more involved in the decision‐making process. Instead, they expect proactive approaches from their healthcare providers or systems that will enable them to be actively involved.

5.1. Strengths and Limitations

This study has some limitations. First, the COVID‐19 pandemic affected the recruitment process. Instead of eight focus groups, with approximately eight participants in each group, only seven focus groups were conducted and with fewer participants than anticipated. The one focus group that did not occur was intended to include older people living at home. We were not able to recruit participants for this group, which could limit our findings as older persons' input related to a move to a nursing home rather than other transitions such as being hospitalised and then returning to one's home. A second limitation is that most recruited healthcare professionals were nurses, where more diversity was aimed for. This could have limited the diversity of ideas for interventions suggested by healthcare professionals in this study. However, the recruited nurses were from different backgrounds (homecare, nursing home care and hospital‐based transition nurses) and their expertise varied. A third limitation is that older people in this study had relatively more difficulties in suggesting clear interventions for empowerment than the participating informal caregivers and healthcare professionals. This made the healthcare professionals' and informal caregivers' ideas for interventions relatively more present in the findings. When the older people had difficulties suggesting clear ideas for interventions, they sometimes implicitly suggested ideas for interventions by talking about their needs. As long as the need was relevant to our research aim and provided that it logically indicated a practical intervention, we included such indirectly worded ideas for interventions (e.g., when the need for information was expressed rather than suggesting information provision as an intervention). A fourth limitation is that while separate focus groups for each participant group (older people, informal caregivers and healthcare professionals) reduce discomfort and encourage openness, as mentioned earlier, they may also limit the study's ability to capture interactions and perspectives across different participant groups. Lastly, this study was conducted in the region of Flanders (Belgium) only. This can limit the generalisation of our findings.

This study's main strength is rooted in its multiperspective approach. Including older people, informal caregivers and healthcare professionals enriched the data. In addition, the participants varied in (disciplinary) backgrounds and experiences with alternative health and care settings. This enabled the researchers to gain a balanced and broad understanding of possible interventions for empowerment in transitional care decision‐making. In addition, the focus groups addressed multiple transition pathways, which helped to adopt a broad perspective of empowerment in transitional care decision‐making interventions.

5.2. Conclusion and Implications for Practice and Policy

Based on the ideas of older people, informal caregivers and healthcare professionals, there is a need for multicomponent, tailored and holistic interventions to empower older people and informal caregivers in transitional care decision‐making.

In practice, healthcare professionals should consider a well‐planned personalised care approach. This implies being attentive to personal needs and preferences and the context where empowerment in transitional care decision‐making needs to occur. Furthermore, general practitioners or other professionals who are in routine contact with older people should consider an advance care planning approach, creating a partnership by having meaningful continuous conversations about possible transition options for the day it will be needed. The conversation should extend beyond medical decision‐making to encompass a comprehensive approach that includes personal, social, legal and financial aspects, for example, as all of these influence older people's decisions. This way, older people and informal caregivers can gradually prepare for a possible transition or at least be well‐informed and supported at the moment of the transition and afterwards. Also, healthcare professionals can support shared decision‐making to enhance the process for current or future care transitions. Informal caregivers are seen as a great resource to support older people. However, their needs and burdens should be recognised, monitored and addressed.

Policymakers should adopt policy measures that create the conditions needed to promote the empowerment of older people and their informal caregivers in transitional care decision‐making. We recommend that local healthcare systems raise professionals' awareness of the importance of advance care planning, information provision and shared decision‐making in the context of transitional care decision‐making and train them to do so. To that end, we recommend developing guidance for empowering community‐dwelling older people and informal caregivers in collaboration with care organisations based on older people and their informal caregivers' ideas and preferences.

5.3. Recommendation for Future Research

Future studies may address the development and implementation of the proposed intervention ideas and assess their feasibility and effectiveness in actual empowerment in transitional care decision‐making. In addition, more original and internationally contextualised research on interventions to empower older people and informal caregivers in transitional care decision‐making is needed.

Author Contributions

Made substantial contributions to conception and design, or acquisition of data or analysis and interpretation of data: L.K., K.D.V. and T.v.A. Involved in drafting the manuscript or revising it critically for important intellectual content: L.K., K.D.V., M.E.E., E.K. and T.v.A. Given final approval of the version to be published. Each author should have participated sufficiently in the work to take public responsibility for appropriate portions of the content: L.K., K.D.V., M.E.E., E.K. and T.v.A. Agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved: L.K., K.D.V., M.E.E., E.K. and T.v.A.

Ethics Statement

The study protocol was approved by the University Hospital of Leuven's Medical Ethics Committee (protocol number S65680).

Consent

Verbal and written consent was obtained before each focus group.

Conflicts of Interest

The authors declare no conflicts of interest.

Peer Review

The peer review history for this article is available at https://www.webofscience.com/api/gateway/wos/peer‐review/10.1111/jan.16510.

Supporting information

Appendix S1.

Data Availability Statement

The data that support this study's findings are available from the TRANS‐SENIOR consortium upon reasonable request.