Transitional care decision‐making through the eyes of older people and informal caregivers: An in‐depth interview‐based study

Abstract Background Older people with multifaceted care needs often require treatment and complex care across different settings. However, transitional care is often inadequately managed, and older people and their informal caregivers are not always sufficiently heard and/or supported in transitional care decision‐making. Objective To explore older people's and informal caregivers' experiences with, views on, and needs concerning empowerment in transitional care decision‐making. Methods A qualitative descriptive study was conducted in the TRANS‐SENIOR consortium's collaborative research using semistructured in‐depth interviews between October 2020 and June 2021 in Flanders, Belgium. A total of 29 people were interviewed, including 14 older people and 15 informal caregivers who faced a transition from home to another care setting or vice versa. Data were analysed according to the Qualitative Analysis Guide of Leuven. Findings Five themes were identified in relation to the participant's experiences, views and needs: involvement in the decision‐making process; informal caregivers' burden of responsibility; the importance of information and support; reflections on the decision and influencing factors. Conclusions Overall, older people and informal caregivers wished to be more seen, recognised, informed and proactively supported in transitional care decision‐making. However, their preferences for greater involvement in decision‐making vary and are affected by several factors that are both intrinsic and extrinsic. Therefore, healthcare systems might seek out age‐tuned and person‐centred empowerment approaches focusing on older people's and informal caregivers' empowerment. For future studies, we recommend developing specific strategies for such empowerment. Patient or Public Contribution Older persons' representatives were involved in designing the TRANS‐SENIOR programme of research, including the current study. Healthcare professionals and nursing care directors were involved in the study design and the selection and recruitment of participants.

comes with increased comorbidities, a growing demand for formal and informal care, 2-4 high risk of hospitalisation 5 and a transition to either short or long-term care facilities. 6 These transitions can have a major impact on older people's and informal caregivers' daily lives due to feelings of confusion and powerlessness, as well as feelings of reduced autonomy when decisions are made on behalf of the older person. [7][8][9][10][11] There is an increasing need for more integrated care to cope with such challenges and for transitional care, more specifically. 9,[12][13][14] The American Geriatrics Society has defined 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'. 15 Even though the literature indicates that transitional care is crucial [15][16][17] and can lead to an improvement in the quality of care, 18,19 good transitional care is not always delivered, and as a result, care transitions can also be associated with adverse consequences such as medication errors, 20 high costs 21 and even mortality. 22 Research shows that factors such as information, support, and involvement in decision-making are needed to optimise transitional care. 7,8,11 Older people's and informal caregivers' involvement in transitional care decisions is often suboptimal. [23][24][25] A scoping review on older people's involvement in care transition planning and the factors guiding their decision-making indicates that transition decisions are mainly taken by healthcare professionals, with limited or unclear involvement of older people or informal caregivers. 26 In addition, a metasummary of literature on older people's experiences regarding participation in hospital discharge suggests that their physical and mental condition, their personal networks, national policies and norms towards shortening hospital stays, and many communication challenges all influence older people's experience with transitional care and their involvement in decision-making. 27 Finally, a systematic review of housing decisions amongst older people shows that factors such as feeling in control over decisions, social and support networks and personal identity can influence older people's transition decisions. 28 According to Castro et al., empowerment is an important process through which people can obtain a greater level of involvement in the decision-making that they desire and are enabled to achieve a greater degree of control over their health and wellbeing 29 ; they also suggested antecedents for the empowerment process, such as a dialogue between healthcare providers and patients, a patientcentred approach and the enhancement of a patients' competences and their active participation. 29 However, little is known about the experiences, views and needs of older people and informal caregivers regarding their involvement in transitional care decision-making or how to best enable their empowerment in transitional care decisionmaking. Hence, this study explores older people's and informal caregivers' experiences with, views on and needs for empowerment in transitional care decision-making in the Flemish setting (Belgium).

| Design
A qualitative descriptive study was conducted using semistructured in-depth interviews.

| Participants
This study was performed in Flanders, Belgium. A purposive sample of participants included older people and informal caregivers.
Participants who faced a care transition that included a move either away from or to their home.

| Eligibility criteria and purposive selection
Older people were eligible to participate if they: (i) were 65 years or older; (ii) experienced at least one care transition, which included a move either away from or to their home in the 6 months before the interview and (iii) spoke Dutch fluently. Informal caregivers were eligible to participate if they: (i) were an older person's primary informal caregiver; (ii) (co-)experienced a transition pathway of their loved one in the 6 months before the interview and (ii) spoke Dutch fluently.
Older people and informal caregivers were excluded if they: (i) had a severe cognitive impairment based on a healthcare professional's clinical judgement or (ii) were in a terminal care situation.
Attention was paid to obtaining sufficient variation in gender, living arrangements (alone or with others), and dependency in activities of daily living based on a healthcare professional's clinical judgement during the recruitment phase. We also strived for variation in transitional care pathways to include pathways with (1) transitions from home to hospital to home; (2) transitions from home to hospital and then to nursing home and (3) direct transitions from home to nursing home, while allowing for the inclusion of pathways with additional or repeated transitions. The informal caregivers were not necessarily related to the older people who participated in the study. At least one informal caregiver of a person with severe dementia (who themselves were ineligible for an interview) was included for each of the three pathways described above.

| Recruitment procedure
Concerning homecare, eligible participants were contacted by the head nurse. In the nursing homes, eligible participants were approached by either the care director or a social worker. They received an oral and written explanation of the study's rationale and aims and were asked to sign an informed consent form before the interview.

| Data collection
Narrative data were collected from October 2020 to June 2021 using in-depth, semistructured interviews. Two interview guides were developed (one for the interviews with older people and one for the interviews with informal caregivers) based on literature including a systematic review's findings 9 and according to the research team's expertise. The interview guides focused on topics such as involvement, autonomy, support and control in decision-making before, during and after the transition but also encouraged the participants to raise relevant and related topics themselves.
We planned pilot interviews with two older people. The interview guide was slightly adjusted based on the first interview.
The second interview did not indicate the need for further improvement of the guide, so this person became the first inclusion for the actual study. Four researchers conducted the interviews and had previous experience in interviewing, while one researcher observed (T. v. A., S. M. B., E. V., B. F. and L. K.). The interviews were recorded and transcribed verbatim.

| Data analysis
Data analysis was based on the Qualitative Analysis Guide of Leuven (QUAGOL). 30 This method allowed for a continuous balance between within-case and cross-case analysis, as well as for the adoption of a forward-backward approach. Six researchers conducted the analysis (L. K., T. v. A., B. F., E. V., S. M. B. and K. D. V.).
The first stage began with the preparation for the coding process and employed a case-oriented narrative approach that enabled the researchers to identify essential and common ideas throughout the data by using the method of constant comparison. The actual coding process took place in the second stage. A thematic analysis was consistently applied to all data, based on the conceptual insights that were developed during the first stage (using qualitative research data analysis software NVivo 11). 30 3 | RESULTS

| Participants
29 participants were interviewed: 14 older people and 15 informal caregivers (mean ages 83 and 62, respectively, with equal gender distribution; see Table 1 for participant characteristics). The interviews had an average duration of 50 min.
Participants experienced seven alternative care transition pathways, which always included a transition either away from their home or back home (see Table 1 for details).
It became clear during the interviews that three informal caregivers and two older people experienced a care transition more than 6 months previously; the interviewers asked if the experiences were still clear in their minds in all of these cases. In discussing this afterwards, the interviewers also agreed that there was no noticeable difference in the participants' recollection of events or the level of detail in how their experiences were expressed. So even though this violated the inclusion criteria, the research team decided to include these interviews in the analyses.

| Results from the interviews
In the interviews, older people struggled to think of, clearly express and/or elaborate upon their views and needs for empowerment in transitional care decision-making, even though the interviewers repeated and rephrased questions to explore such needs and views. Thus, an initial and significant finding is that our data contain older people and informal caregivers' experiences first and foremost.
Five main themes could be derived from the data: involvement in the decision-making process; informal caregivers' burden of responsibility; the importance of information and support; reflecting on the decision and influencing factors in the decision-making process.

| Involvement in the decision-making process
Three levels of older people's and informal caregivers' involvement could be distinguished: (1) taking the decision autonomously and being in charge; (2) being involved and making shared decisions and (3) not being involved. At the three levels, the involvement could relate directly to the decision of whether or not to transfer from one setting to another or to how a transition was made (when, where and how). The older people's and informal caregivers' levels of involvement in transitional care decisions were often interrelated, meaning that when an older person was highly involved in decisions, the informal caregiver was often less involved and vice versa.
Older people taking the decision autonomously and are in charge Some study participants that faced a long-term care decision reported high levels of autonomy in the decision-making process.
Some of these older people stated that the transition was their own well-considered decision and aligned with their needs and preferences.
…I really missed her [the spouse who moved into a nursing home] and she was only gone for a week… If professional healthcare at home is no longer enough, then we had to make that decision for her… But I said no; I can't stay home alone, that is not going to happen… so I moved with her [to the nursing home].
(Older person 1, home to nursing home) Other participants were also autonomous and were in charge of the decision, but to them, it was more of a forced decision because they felt a decline in their physical or mental condition, combined with their informal caregivers' limited capacity, made it impossible to stay at home.
…I was absolutely unwilling to move to a nursing home. I was actually, um, not obliged but the facts, the events in the environment sent me in that direction. I wanted to resist that for as long as possible, but I had to acknowledge that it was no longer possible to stay at home. I said to myself: 'I don't like it, but there is no other choice…' (Older person 2, home to a nursing home)

Being involved and making shared decisions
Some older people and informal caregivers in this study indicated that the transition decision was a shared decision by the older person and by the informal caregiver(s) and that healthcare professionals were only a little bit involved. These participants felt involved and heard.
However, some informal caregivers reported a long (and stressful) process, including several conversations and discussions, during a transition to a nursing home.
…We [the informal caregiver and the older person] have really been working for years towards the decision to move from home to a nursing home, but he always said: 'No, when I'm 70 years old…' and then we thought 'Okay, we will wait'… But at a certain T A B L E 1 Older people's and informal caregivers' characteristics. At the same time, some older people in this study also expressed concern about the well-being of their informal caregivers and family and the fact that they do not want to be a burden on them.
I couldn't go any other way; that was the only solution.

| Importance of information and support
Access to information and support from others were crucial elements in the transitional decision-making process.

The importance of information
Access to information was indicated as an essential element in the transitional decision-making process for both older people and informal caregivers in this study. This related to both the sort of information needed (medical diagnosis, treatment plan, discharge process and nursing home arrangements) and how it was delivered (face-to-face, by phone or digital), and in relation to the issue of timing.
Participants in this study stated they were highly dependent upon the information they received from healthcare professionals.
This related to the amount and timing of the information given to them, but also to the fact that they had to ask for information and that information was not given spontaneously. This caused confusion and frustration and hindered the participants in the decision-making process: The biggest obstacle is that they didn't inform me.
That they didn't say, 'so or so'. Some study participants, when faced with a transition from home to a nursing home, felt that time was on their side. They were able to think about alternatives and visit locations. However, they indicated that information did not come to them but that they really had to make a great effort to reach out to the nursing homes for information. If they were not able to ask the right questions, then they did not receive the necessary information. Informal caregivers had their own support needs that needed to be met to be able to support their loved ones. Some informal caregivers mentioned the importance of their partner, children and siblings in the decision-making process. They carried the burden together; they also 'ventilated' difficulties and frustration, recharged their batteries and got advice.
The support from and the role played by healthcare professionals were not mentioned spontaneously. The older person, the informal caregivers and the family seemed to be the most important people in the transitional decision-making process. The healthcare professionals were considered important in the process, but this was only raised when expressly asked.
Gosh yes…The social assistant actually helped us.
Assistants from the residential care centre and from the hospital as well, who recommended various things to us and gave us a lot of freedom. We continued to look for things ourselves, we had a suggestion and went to the assistants… (Informal caregiver 7, home to hospital to a nursing home) Some of the informal caregivers experienced the need for more proactive support and guidance in the transitional decision-making process. They expressed the need for a multidisciplinary meeting and shared decision-making after a move from hospital to home and before a move from home to a nursing home.

| Influencing factors
The urgency of the transition, the familiarity with the selected transition destination, a person's personality and the COVID-19 pandemic all influenced both older people's and informal caregivers' transitional care decision-making experiences, views, and needs.

The urgency of the transition
The level of involvement in decisions was strongly influenced by the care transition's urgency. Acute situations, such as critical health problems, resulted in little time to think about alternative options, and older people were often incapable of decision-making at such moments. Older people and their informal caregivers stated how things 'just happened', without a profound decision-making process.
They accepted that this transition had to happen at that time; the decisions were mostly made by the healthcare professionals in these situations.
In contrast, situations such as a nonacute move from home to a nursing home implied more time for consideration and a profound decision-making process, exploring alternatives and preparing for the transition. Our data showed that older people and informal caregivers were more in the lead in such situations.

Familiarity with the destination
Being familiar with the transition destination was seen as a facilitator in the decision-making process by both older people and informal caregivers in this study. In a move from hospital to home, older people felt safer if their home was near the hospital and if their family was close by. This was important in case something went wrong. Older people moving from home to a nursing home and who were able to stay in the same area experienced an increased feeling of confidence compared to those who had to move further away from the town or region that they had always known. 'Well, I also think, this is in the neighbourhood… and she [the older person] also knows a lot of people here. So, she came here and immediately there were a few people she knew' (Informal caregiver 11, home to hospital to a nursing home). This study has identified different levels of involvement in transitional care decision-making.
Variation in transitional care decision-making involvement preferences was identified in this study, implying that needs will also vary in this respect. Similar variation was also reported in other Also, most of this study's participants expressed the importance of timely information. With a view to empowerment in decision-making, information was also reported as a pivotal element by Castro et al. 29 Furthermore, the TRANSCIT model for transitional care as developed by Groenvynck et al. 10

| CONCLUSIONS
Overall, older people's and informal caregivers' experiences indicate their need to be proactively recognised, informed, and supported in transitional care decision-making. Involvement in decision-making is crucial to ensuring high quality in transitional care. However, preferences for involvement vary and are affected by several intrinsic and extrinsic factors. Therefore, healthcare systems might seek out age-tuned and person-centred approaches focusing on older people's and informal caregivers' empowerment. This can enable older people and informal caregivers to achieve a greater influence over their transition decisions by encouraging them to gain more control over issues they define as important.

| IMPLICATIONS FOR FUTURE CARE AND RESEARCH
The results of this study indicate a need for the consideration of a more person-(or family-) centred approach to better understand persons' decision-making and their transition circumstances. Such person-centredness is often a prerequisite for empowerment. 29  The data that support this study's findings are available from the research team upon reasonable request.

ETHICS STATEMENT
The study protocol was approved by the Ethics Committee for Research UZ/KU Leuven Medical Ethics Committee (protocol number S64423). We obtained verbal and written consent before each interview. Data were pseudoanonymised for privacy and confidentiality reasons. Since the target group consists of vulnerable persons, sufficient attention was paid to supporting the older people and informal caregivers during the interviews by clarifying expectations before the interview. This allowed participants sufficient time to formulate their answers, speaking loud enough, reformulating the question when necessary and providing postinterview debriefing time ensured that the person was satisfied with the interview and that their concerns and well-being were sufficiently addressed. The fact that participants could end the interview at any time was also stressed. Verbal and written consent was obtained before each interview.