We identified four major themes (Fig. 1) that capture what the patients and their relatives experienced as important for them during the acute hospital stay: being seen and valued as a person, individualised care, patient-adapted communication and information, and collaboration with relatives. The themes span both positive and negative experiences, reflecting great variability in the experiences described. The material can be understood as a continuum between the two opposites of positive and negative experiences. Patients and relatives describing these four positive experiences reported a positive hospital stay, whereas the opposite, absence or negative valuation of these themes, promoted negative experiences of the hospital stay. Patients and relatives reported similar experiences. When describing a positive hospital stay, patients experienced being met and respected for who they were and their own needs, which contributed to a feeling of predictability and safety for both patients and relatives. If, on the other hand, these were not present, the hospital stay was experienced as unpredictable and, for some, unsafe. The negatively ‘coloured’ experiences contributed to patients and relatives experiencing not having their needs met or feeling unworthy, which led to disappointment and even resentment. In the following, the four themes are delineated in further detail.
Being seen and valued as a person
The patients’ and relatives’ experiences emphasised the importance of each patient being seen and recognised as a person who is valued and met with respect, honesty, kindness and compassion, without the feeling of being objectified and treated as a ‘parcel on an assembly line’, as one patient described it. Another patient with positive experiences related to this described it as a form of sincere kindness:
‘It is the kindness and … I want to emphasise, the sincere kindness. There is a difference… Kindness can be acquired quite easily, but the honest kindness is the one you see in people [here]’. Patient (P)1
Several aspects of the hospital stay influenced the experiences, colouring them as primarily negative or positive. The relatives having positive experiences during the hospitalisation valued that the health personnel communicated directly to the patients, as this contributed to each patient feeling respected as a person. There was also a recognition that ‘being seen and valued as a person’ was closely connected to how much time the health professionals spent with the patient. Both patients and relatives describing positive experiences found it reassuring that the health professionals visited the patient often, often outside of routine tasks, and spent time listening to what the patient had to say, even though they were in a hurry and had many other patients to look after:
‘I have not seen anything like it. I have been so safe, I have not been anxious for an hour, they have been here so often’. P2
‘In a way it is always like: “Here is the leash!”—coming by and [saying]: “Just pull this, I will come again”. And if she does not pull the bell, they will come by anyway. I think it is absolutely fantastic how she has been followed up; an incredible number of skilled people work there’. Relative (R)1
These patients and relatives generally expressed great trust in, and respect for, the health professionals for doing a great job despite limited available time. Even though they recognised the constant bustle in the hospital ward, they felt safe and taken care of. The following quotes illustrate the sentiments among these participants:
‘They run several kilometres a day and are doing the best they can. You cannot ask for more’. P3
‘I think they are completely unique. Ring this bell and they will come right away… if they are not somewhere else. Sure, they cannot be everywhere at once’. P4
Furthermore, being taken seriously and listened to were closely linked to positive experiences. Both patients and relatives expressed the importance of being closely followed up and assured by the doctor that they were doing everything they could for the patient and were not giving up on them just because they were old:
‘It is important…that she is taken seriously, even though she is almost 90 years old….I think that is important. You are not getting scooped up in a corner because you are too old, and I think that is very good.’ R2
In contrast to the positive experiences of being seen and valued, this sample also reflects negative experiences in relation to feeling seen and valued as a person. Several patients and relatives felt that the care was not consistent. Their experiences varied greatly depending on the individual health professional who cared for them. They described large differences in helpfulness and understanding among the health professionals. Some of the patients expressed that when you are a vulnerable patient unable to speak up for yourself, you are at the mercy of the person you meet, which ought not to be the case:
‘When you wear this gown, you are put together with all the others. They do not greet one, and there are many who… they just shuffle past and look straight ahead’. P5
Many patients expressed feeling lonely and bored during the hospital stay, and that their psychological and social needs were often not met. Some patients would have loved to take a walk outside the patient room, either to talk to other co-patients or just to see something other than the walls inside the patient room. However, they experienced that no one saw them or their needs; the health professionals was busy and concerned with medical issues and task-oriented care. If anyone happened to come into their room, it was just because they had some routine tasks to accomplish. This led to doubts about whether the health professionals was able to provide adequate care at all:
‘I think both me and my mother experience it as an assembly line. There is no care in those who work there. You are just a number in the line, and everything goes on autopilot and then out…done with you’. R3
Furthermore, when patients experienced being left alone in the patient room and felt that no one had time to look after them, they often felt totally ignored and unworthy:
‘They just drive you into a “hole”, and then there you go… just lie here until we have time for you’. P6
One patient expressed that she thought the health professionals were tired of her; when she called the bell, she was told that she had to wait because they had many others to take care of. This left the patient with feelings of anger, being a burden and greater vulnerability:
‘I know there are others here….but when I’m in pain, I need help…’. P6
Individualised care
The patients and the relatives emphasised that one of the most important aspects contributing to a positive hospital stay was receiving help with their individual problems and knowing that something was being done and that they experienced getting better:
‘I have had such a good time during my hospital stay, I could not wish for more. The nurses, doctors, everyone … they got me on my feet’. P2
Relatives appreciated when the health professionals were well prepared and well informed about patients’ care needs. This was especially important for patients with cognitive impairment. The relatives expressed satisfaction with the health professionals’ focus on the patients’ wellbeing and creating a calming and less stressed environment so the patient felt safe and calm even though they were in an unfamiliar environment. As one relative explained:
‘I think a lot is good…. they know that my dad has a hearing aid in his right ear, they know that they have to speak loud and clear. They know they have to look at him when they talk to him. And they ask questions back to him, to hear if he has understood correctly. In other words, they have read the patient journal and they know what they are supposed to do in relation to communication and how the patient is doing’. R4
Some relatives experienced that the care focused primarily on the diagnosis of relevance for the unit in which the patient was admitted, rather than the person as a whole human being. These individuals experienced that the health professionals had special competence in their particular fields (e.g., heart or lung diseases), but not the competence to address other matters, which is necessary in relation to care of older people. For example, patients and relatives articulated that sometimes patients with cognitive impairment have problems communicating their own needs and that they often misunderstand things. Thus, to help these patients with their individual needs, the health personnel must have knowledge on how to adapt care to patients with cognitive impairment:
‘You have to try to treat each patient differently based on each diagnosis, and if there are several diagnoses, they must try to see the whole… like how can we try to do the best for this patient? But it is not so easy to do something for a patient who is not quite able to say what he wants’. R5
Relatives articulated that the health professionals was not aware of how serious the patient’s cognitive impairment and memory loss actually was and the serious consequences it could lead to if the health care personnel were not careful enough. Sometimes the patients can say no to a question when they actually mean yes—or they may know what they want to tell, but they do not remember the words and do not manage to express it. The patients expressed that they sometimes felt stupid and did not always manage to think clearly. One patient explained that his tongue did not always cooperate and that it was difficult to express himself. Relatives of patients with cognitive impairment often experienced that the patients did not question anything, and sometimes they did not manage to ask for painkillers. Thus, they could be suffering from pain for a long period if the health professionals did not help them to convey their needs:
‘Even though you have dementia, and may not manage to express yourself, you still feel pain’. R6
Furthermore, patients with cognitive difficulties often forgot to ring the bell when they needed help or forgot that they could not walk, thereby needing supervision more often than other patients.
Patient-adapted information and communication
There was some variation in how patients and relatives experienced receiving the information they needed. Positive experiences of the hospital stay were connected to relatives and patients having adequate and patient-adapted information during the hospital stay. The patients wanted the health professionals to inform them before procedures and about further plans regarding discharge. Thus, they did not need to ask a lot of questions and felt safe and assured that things were being taken care of:
‘Patient: I get to know what I need without digging and asking...It has been sufficient. And then, when I have got that information, I do not need to bother, or fuss any further about the discharge’. P7
Although some experienced having their information needs covered, the experiences in relation to information were mostly negative. Several patients and relatives articulated that they did not receive any information if they did not ask for it. Some also experienced difficulties getting relevant information because they did not know what to ask for:
‘Well, if I was going to get any information over there, I at last had to ask. I didn’t get any information without asking’. R7
‘Sometimes they say, “Ask over there,” and then there are two of the health professionals talking to each other and then you don`t quite know if you can disturb while they are talking… so if they could just come to us and inform us a little…’. R8
Furthermore, patients also asked for more information about what the plan for the day was instead of having to sit and wait for the doctor to come. Such a lack of timely information made patients feel very confused and impatient:
‘It would have been much easier to be here if I had known, instead of sitting here and just waiting…When will someone come and what’s next?… It seems like it’s all so secret’. P5
Most patients and relatives articulated that it was extremely difficult to get in contact and get information from the doctors because they were always in such a hurry. The relatives frequently experienced having to trust the patient to get informed, which was especially difficult in cases where cognitive impairment was present, and the relatives worried that the patient had not comprehended the information provided:
‘It frustrates me more than anything else, not getting answers…not getting in touch with the doctors. I know they have a lot to do, but it’s frustrating as a relative. Especially if you have a patient with cognitive impairment’. R9
These experiences of extensive waiting and few answers were often related to experiences of unpredictability for both patients and relatives.
For the patient to receive adequate information, the health professionals also had to be aware of the patient’s prerequisites for processing information. Even though many patients experienced getting information, they also conveyed that they could not always remember what they had been told. Relatives expressed that the patient received too much information, and they often did not remember any of it and ended up believing that something completely different was wrong with them. The relatives also highlighted the value of having one responsible doctor, which they described as highly important for patients with cognitive impairment.
‘I experience that the treatment becomes so diffuse, that one doctor decides one thing and then another doctor comes and he decides something else, and then a third doctor decides a third thing. You see, there are too many “cooks”, and my dad is getting completely confused, he does not understand anything of it’. R4
The patients also desired involvement in decision-making regarding treatment and discharge, including recognition of their needs. They expressed that early discharge planning provided predictability and promoted hope. However, patients and relatives often experienced inadequate preparation for discharge and a lack of information from the health professionals, resulting in experiences of inappropriate care and worries about the time after discharge. This also often led to the impression that the patient was being discharged before finishing their treatment:
‘I have an impression that the pressure to get a free bed is so great that when there suddenly were many beds in the corridor, he had to leave the hospital, and then I only get a phone call that he had to be picked up in an hour’. R10
Collaboration with relatives
Both patients and relatives highlighted the importance of involving the relatives throughout the hospital stay. The relatives experienced responsibility for the patients both during the stay and after discharge. However, experiences varied in terms of feeling sufficiently involved in the care of the patient. The relatives explained that the patients depended on them to help them convey their needs. Relatives who were satisfied with the hospital stay expressed that they were included when the patient received information about treatment and discharge planning. They described that they could come to visit whenever they wanted and felt that their knowledge about caring for the patient was valued and considered an asset. In contrast, other relatives felt that they were not heard or taken seriously when they tried to convey the patient’s needs. Some relatives almost felt guilty as they felt that the personnel communicated that the relative had the patient admitted for no reason. Furthermore, some relatives also experienced visiting the patient as problematic and did not feel welcome outside the visiting hours:
‘They were so set on the rules of visiting time …they were a bit brusque. He received good care, and I will not complain about that, but somehow when we understood that he would not make it, we found it a bit painful not to get to visit him if we came a little outside visiting hours’. R11
In particular, relatives of patients with cognitive impairment often perceived themselves as key actors in terms of ensuring that the older person received care in line with his or her needs, but they sometimes experienced that their concerns were not taken seriously:
‘They would have had to put a person on him “as a stamp” if I had not been allowed to be there. But … many [of the staff] do not understand. They probably really look at me as someone who wants to get in the way’. R12
Several relatives were worried about leaving the patient alone in the hospital because they perceived that the patient could not speak for him/herself. They doubted that the health professionals would understand and have enough time to give appropriate care to the patient. The relatives felt that they had to take responsibility so that the patient got the care s/he needed:
‘We experience that …… at least some of us must be there all the time and make sure that he gets what he should get and that he gets the right medication and that he gets it at the right time’. R13
As described in the previous theme, relatives wanted to be involved when information was given and not just read the discharge papers afterwards. One relative suggested a note to relatives about what had been done with the patient during the hospital stay, the diagnosis and how they were expected to follow up after discharge. Both relatives and patients experienced this as reassuring, as the patients themselves often felt unable to perceive everything that was said and were afraid of forgetting things. The relatives highlighted the importance of being involved in the discharge planning process and being assured that the patients’ basic needs would also be taken care of after discharge, e.g., by communicating with home care services. However, they often experienced poor or insufficient communication and involvement at discharge, sometimes resulting in negative consequences when the patient returned home. Several relatives perceived that older patients often do not want to be dependent on or a burden for others, thereby saying no when asked if they need help at home. The relatives emphasised that health personnel should verify with the relatives if what the patient was saying about managing at home actually fits the reality:
‘They had asked Dad if he needed any help when he got home, but Dad said: “No, no, it’s fine, because my daughter does not live very far away!” Things that he knows I somehow do not have the opportunity to do. And then the nurses just rely on this. Well, in this case, this was not true, so it was problematic when he returned home. They should have called and asked if it was true; your father says that when he comes home it’s easy for you to help him in the morning and just take time off from work… is that part of reality?’. R14