The final analysis resulted in four recurring themes across the four sub-projects, expressed as challenges in order to achieve high-quality transitional care for older persons and their informal caregivers, that is, balancing person-centred versus efficient care, balancing everyday patient life versus the treatment of illness, balancing user choice versus “What Matters to You” and balancing relational versus practical care.
Balancing person-centred versus efficient care
Balancing person-centred versus efficient care emphasises the difficulty of providing personal, tailored care in a system predominantly structured for efficient patient flow. The goal of care was, according to all informants, to contribute to a meaningful life. Although the services are supposed to be holistic and involve the older persons and informal caregivers in decisions about their care, the participants instead described a predetermined clinical pathway with a lack of personal choices regarding both time and place of services, such as hospital discharge, IC services and home care. The patients and informal caregivers called for better information, continuity and predictability, while the HCPs experienced limited professional discretion and structural barriers in daily care to meeting the patients’ needs and preferences [39,40,41,42,43,44,45,46,47,48,49,50]. Efficient patient flow issues often challenged the pathway. One HCP said,
I understand that society has to think about money, both the hospital and municipality. But there are too many cases where the patients are not heard and directly ignored because it costs NOK 5000 [550 USD] extra per night [in hospital] ([49] p. 8).
Lilleheie et al. stated that patients were commonly discharged from hospitals at an early stage, not always involved in decisions regarding the next level of care and subject to scant information reporting in a system not integrated thoroughly around a patient’s own journey. Within this system, the patients’ vulnerable conditions in the first 30 days after discharge made it the informal caregivers’ responsibility to bridge the gap [45,46,47].
For the informal caregivers, these expectations from the system, often outside their comfort zones and areas of expertise, and the absence of information, made the coordinating role burdensome and unpredictable. One of the informal caregivers expressed it like this:
The system is not self-explanatory and I didn’t really know anything, what to ask for and so forth. They should have given her [the patient] better information. Relatives and patients need better information ([46] p. 6).
Kvæl et al. found that IC services are highly appreciated, bridging the pathway between hospital and home; however, the method of providing these services depends highly on collaboration between the districts and each IC unit within the bureaucratic purchaser-provider model, ranging from very good to non-existent. The informants argued that in order to achieve PCC, HCPs need to be acknowledged for their work, an important outcome of PCC that in many cases was absent [42,43,44]. In light of the fast-in and fast-out model of hospitals and IC, the participants painted a picture of a standardised system in which the patient must fit the system, instead of a service providing help in accordance with the individualised needs and preferences of the patient, that is, PCC. One district coordinator emphasised this:
I understand the importance of the patient’s voice being heard. No one fits into a box, I understand the thinking. But I see that real patient participation [and PCC] is difficult to achieve in a health-care system that is built up like ours. These are the services we have! The day center has a specific structure that you have to fit within. And within IC there are other criteria. As a patient, you might say what you would like, but whether you ever receive it, is not up to you ([43] p. 925).
Within the context of nutritional care, Hestevik et al. emphasised that HCPs, older patients and informal caregivers expressed that individualised care was challenging to achieve. For example, although the HCPs had a strong focus on nutritional care when caring for older patients, lack of time and heavy workloads were highlighted as barriers to fulfilling their mandated responsibilities, resulting in inadequate nutritional care that consisted mainly of providing nutritional drinks and pushing the button on the microwave. Hence, nutritional assessments conducted in hospitals were seldom followed up at home [39,40,41].
Furthermore, the participants receiving home care reported short visits with little time for conversation about patients’ nutritional concerns or preferences, as well as frequently meeting different personnel daily. They experienced unstructured services to support the adaption of healthy food consistent with their health problems, creating gap in standard services and real PCC. One older patient described her nutritional situation in this way:
I had to get a microwave oven, because that was the first thing they [homecare services] asked for when they started coming here. I don’t like such food. I want to make homemade food. I don’t know what kinds of food I am supposed to buy. I can’t eat only ready-made meals. First of all, I can’t stand the taste of these ready meals, and secondly, I find them too expensive ([40] pp. 6-7).
In a quality improvement collaborative, HCPs from hospital care, IC and homecare illustrated that the successful crossing of knowledge boundaries was essential in practicing person-centred transitional care for older people. Knowing the patients and knowing each other, both within care teams and across levels, seems to be of great relevance for establishing a common ground in understanding patients’ personal journeys and thus promote continuity of care [48,49,50]. One HCP from home care emphasised the importance of this knowledge exchange:
That the user doesn’t have to repeat herself at each new place, but feels like the people I relate to here, they communicate, they know who I am [...] that the user feels like when they ask me questions they ask them as if they already know me a little ([50] p. 9).
Balancing patients’ everyday lives versus the treatment of illness
The dominant biomedical approach in healthcare represents an insufficient understanding of the patients. Our informants asked for more holistic healthcare in order to understand how a disease influences older patients and how to reply to the accurate needs of the person, as well as the importance of considering the complexity of geriatric care for both patients and caregivers and the need to offer patients meaningful choices. In all the sub-projects, the researchers argued that HCPs need to consider aspects of everyday life with a chronic disease and expand existing resources to provide what is important to patients [43,44,45,46,47,48,49,50].
Beyond biological losses, ageing often implies noteworthy life changes, such as new roles and movement in social status. The studies examined here all focus on the shortcomings of biomedical-oriented care for older people. The HCPs in Hestevik et al. noted that the biopsychosocial dimensions of care need to be addressed to prevent, for example, depression and loneliness [39, 41]. Patients and caregivers reported fears of functional decline, with impacts on self-identity and mental health. Some people reported not liking to eat alone [40].
The importance of multidimensional healthcare is highlighted in Kvæl et al. [43]. In this study, HCPs explained that patient participation in IC services should be part of a holistic process that considers the complexity of geriatric problems, i.e., physical, social and psychological aspects. It seems like service provision is mostly based on physical criteria, at the expense of psychological and social circumstances. A nursing assistant suggested,
We see the disease but not the person behind it. I believe that if we increase our holistic understanding, it will also become more natural for us to let the patients decide ([43] p. 926).
The informal caregivers in Lilleheie et al. [46] claimed that hospital stays were framed within a medical approach, with less focus on people’s thoughts and complicated issues. One said,
It’s going to be like this: ‘Now we have arranged the pills, and the situation with the pills is OK and stabilised, so now you can go home, because we must have your bed for someone else’ ([46] p. 5).
Another patient quoted in Lilleheie et al. lamented the lack of a broader perspective: ‘They are more interested in tangible things’ [59 p. 7]. Many patients reported that an isolated life resulted in depression, a feeling of hopelessness and lack of zest for life. The narratives of HCPs illustrated complex geriatric problems. These individuals reported that giving nutritional care to many older persons was demanding due to the complexity of old-age issues. Multifaceted issues such as dental problems, cognitive impairment, depression and loneliness influence people’s appetites and food intake [39]. One HCP said,
It seems like the lack of food intake is not solely due to illness, but it is also due to more psychosocial issues like the loss of a loved one, suddenly being alone and maybe not being able to get out of the house ([39] p. 4).
The patients and family caregivers suggested that many of the staff lacked knowledge about their preferences. The staff were often students working part-time while studying in other fields than healthcare [40]. All the articles [39,40,41,42,43,44,45,46,47,48,49,50] showed that HCPs cannot fulfil their potential if the care environment is not conducive to having a suitable skill mix, cultures promoting patient involvement, healthy staff relationships and supportive organisational structures framed within a physical environment that facilitates participation. Lilleheie et al. [47] examined everyday life after hospital discharge and found that these patients described no longer having the ‘energy’ to initiate daily activities, such as house cleaning, grocery shopping and socialising. ‘Previously I had guests all the time, but I don’t have the same capacity anymore […] It has gone steeply downwards with my social life’ ([47] p. 8).
Balancing user choice versus “What Matters to You”
Balancing user choice versus “what matters to you” embraces the tension between authentic participation and the challenges of achieving this through the structured what matters to you (WMTY) framework. Many patients experienced an absence of involvement, which could cause distress, where decisions regarding nutritional care were made over their heads. One patient remarked, ‘They have started to prepare sandwiches for me, but I have told them to stop doing that. I can manage on my own’ ([40] p. 8).
According to Kvæl et al. [42], geriatric patients and their relatives lamented a ‘lack of choice and expectation of compliance’ and ‘being perceived as deserving’. One patient had applied three times for a place in long-term care due to functional decline. However, the patient was declared not ‘sick enough’, although she had been in and out of hospitals recently.
The patients most satisfied with the quality of care were those with uncomplicated problems, adaptable personalities and socioeconomic resources. A patient’s son, aged 63, said, ‘She is probably a nice patient because she does not complain or set too high demands, and because she accepts things’ ([42] p. 7). Not all patients were interested in user choice and responsibility; some wanted to leave these aspects to the experts. However, most of them, wanted to be asked about their opinions. As a 91-year-old woman said, ‘To me participation is important, but I do not think it applies to all patients, not everyone is interested in or able to follow what is being done with them’ ([42] p. 8).
Not all patients had a choice, however. Several informal caregivers noted that discharges were made against their wishes and occurred earlier than expected. The informal caregivers missed, after discharge, the follow-up care given by HCPs in the hospital, which mainly was tailored to reflect the choices of elderly patients [46]:
We already know that patients may not be in the hospital if they are not sick and need treatment … Then we asked: ‘What about a stay or rehabilitation in another department?’. …We were a little unsure of her condition, how she was going to be when she got home. But then we really only got a message the day she was sent home, that now she had been sent home ([46] p. 7).
To explore patients’ perceptions and experiences of what matters to them regarding healthcare can support personal goal setting, in keeping with this study’s ideal that those receiving healthcare should be allowed to determine their lives, the ‘What matters to you?’ (WMTY) question was highlighted by Olsen et al. [48]. In this study, the HCPs regarded WMTY not as an ordinary question, but rather as a complicated activity requiring skills in order to be used appropriately in clinical practice. Furthermore, the participants [48] agreed that the WMTY question was complicated and occasionally troublesome to use. They described the question using words such as ‘too big’, ‘dangerous’ and ‘soaring’.
The WMTY question was in some cases understood too literally, especially when used as the initial question upon hospital admission. One participant said,
One has to try to make the question less dangerous; ‘how shall we plan ahead? What matters to you? What do you want in the future?’ So, I think it needs to be rendered less dangerous. And if your focus is on user involvement, then it really is just a part of a conversation and a larger approach ([48] p. 6).
Consequently, the informants reported the potential for building ‘castles in the air’ when using WMTY. The framing of WMTY was also based on the experience that older people often required help to respond to the question. The timing of the question was the most salient issue. Many of the informants emphasised that WMTY involved supporting the older person to identify goals that HCPs were able to help them with [48]. Kvæl et al. [42] reported too little focus on meaningful engagement with patients and caregivers during IC stays and care transitions. They suggested that the WMTY question be asked as part of the family meetings in IC to highlight the older person’s goals, preferences and resources.
Balancing relational versus practical care
Balancing relational versus practical care embraces the dilemma HCPs may experience when juggling between individual needs, resources and organisational structures. However, as revealed in the included articles, practical tasks are often prioritised at the expense of relational care, i.e., time to engage with patients and their informal caregivers. Relational competence was described as being able to listen to other people in a reflective way, being empathetic, as well as knowing the patient. Examples of practical care were reported as working in an instrumental way and were related to technical tasks and standardised routines that HCPs provided during daily care. In addition, there must also be a greater emphasis on the work conditions of the HCPs in hospitals, IC services and home care [39,40,41,42,43,44,45,46,47,48,49,50].
To be professionally competent, the two competencies are intertwined and complementary in all clinical encounters between HCPs and patients. Hestevik et al. revealed that HCPs in home care were aware of the importance of establishing alliances with the patients and their families to recognise their will and thoughts about nutritional care. One HCP stated, ‘We work with the psychology behind it now. How can we turn food and drink into something positive?’ ([39] p. 5). They often experienced, however, insufficient time and resources to do this in daily care [39, 41]. Thus, patients and relatives believed that the HCPs lacked competence in nutritional care since they never asked for patients’ preferences regarding nutritional care or reasons for these issues, nor did they talk to them about potential solutions [40]. One patient said,
For many people living alone, the only human conversation they have during a day is with the people from home care services. I think it is important that they take the time to talk to these people, not just rush in, make food and goodbye ([40] p. 7).
Furthermore, closely related to relational care is knowing the patient, i.e., understanding their life situation and family network, daily habits, preferences and way of living [48,49,50]. Olsen et al. illustrated that HCPs working in specialist and primary services may see the older persons differently since hospital and IC staff only have a momentary picture of the patient, and therefore they are not always able to see a patient’s overall resources and ability to manage life after discharge [50]. One HCP in institutional care underlined this:
We write a lot of electronic reports based on our experience of how we see the patient when he is admitted here. And then maybe we see a frail older person and we haven’t looked into how they are able to function at home. And then immediately we think ‘oh they need a nursing home placement, oh poor person’ ([50] p. 8).
Additionally, in IC services, knowing the patients and their informal caregivers as well as each other, that is, establishing multiple alliances, is crucial when balancing relational and practical care. In addition, competence within rehabilitation, how to facilitate patient activity without simultaneously forcing patients as well as informal caregivers into ‘desirable behaviour’, stands out as highly important, i.e., balancing user choice and user responsibility. To obtain this balance, HCPs must develop interpersonal skills such as how to communicate at different levels using both verbal and non-verbal interactions in a sensitive way to negotiate mutual solutions [42,43,44]. One informal caregiver described it like this:
It’s about empowerment. In this case, you must give the patient an understanding and confidence that their reflections are necessary to hear. Being able to initiate a good dialogue ([42] p. 8).
According to Lilleheie et al., this was also the case for informal caregivers who constantly had to balance caregiving for their loved ones with both expectations from HCPs and other life commitments [45,46,47]. In fact, the patients in Lilleheie et al. described that in order to handle daily living, the patient was depending on informal caregivers. Statements like ‘I don’t understand how I could manage without their help’ and ‘My son organizes everything for me’ ([47] p. 8) emphasise this dependency on informal caregivers. However, the patients also had concerns that this dependency could damage their relationships [45,46,47].
The tendency for task orientation is addressed by Olsen [48,49,50]. This instrumental competency must be balanced with relational competency if care is to be person centred. Professionalism is not only the job you do—it is how you do the job. For example, Olsen et al. found that framing WMTY as a functional approach was to a large extent about supporting the other to identify physical goals that HCPs could transfer into practical tasks, often connected to user responsibility and the ability to return home with as little help as possible. Thus, it was closely linked to quality domains like efficiency. On the other hand, framing WMTY as a relational approach includes knowing the person, promoting dialogue and establishing an alliance in order to give the patient a personal voice. One participant said the following about the WMTY question:
We would very much like to hear the user’s voice and take it into account. And to get to know what matters to the user, we actually have to ask, if not, we are just guessing. And then, it is easy that we guess based on what matters to us instead ([48] p. 9).
Framing WMTY in a structural conversation, such as family meetings, might be successful. However, it is not possible to control these meetings based solely on a standardised checklist; thus, understanding our power as HCPs in relation to vulnerable patients is essential. A professional flexibility within the predefined rules of conduct may promote participation among older persons and caregivers [44]. Accordingly, balancing relational and practical care highlights the need for competent HCPs who have the ability, i.e., professional discretion, and skills to manage the multiple contextual and attitudinal factors in the practice environment and to facilitate the processes that keep the person at the centre of interactions [39,40,41,42,43,44,45,46,47,48,49,50].
A line of argument synthesis
Quality transitional care reflects a dedication to provide the best care to patients and their informal caregivers, as well as a commitment to the team and the organisational culture. However, as our results indicate, dilemmas might occur due to conflicting policies expressing various domains of the quality concept in transitional care for older person and their informal caregivers, i.e., balancing standardisation and individualisation in transitional care pathways.
Figure 1 illustrates that in order to provide high-quality transitional care, the healthcare system must be balanced with respect to person-centred and efficient care, how the care team approaches everyday patient life while treating the illness, translating what matters to patients into users’ choices and relational versus practical care. Balancing these potential dilemmas must be addressed at all levels, including the policy, organisational and individual levels. The concepts within each theme are not ideal types existing in pure forms but are a method of conceptualisation used to organise theoretical and practical issues. In the same way, the various themes are integrated in transitional care. In reality, they overlap, or even compete, but when balanced, they have the potential to promote quality transitional care.