Scientific Papers

Relatives’ experiences of care encounters in the general ward after ICU discharge: a qualitative study | BMC Nursing

The overarching theme of ‘longing for trust and struggling to be involved in their loved one’s care’ was illustrated in the following two subthemes: ‘wanting to be seen as an important piece of the puzzle’ and ‘being vigilant and worrying about the quality of care’. Please refer to Fig. 1.

Fig. 1
figure a

Theme, subthemes and interpretation of the underlying meaning

Longing for trust and struggling to be involved in their loved one’s care

The theme and two related subthemes together describe relatives’ experiences of care encounters with nurses in the general ward. Relatives felt a huge responsibility to ensure the quality of care for their loved ones during this phase of care. Relatives expressed that after the transfer from ICU, they, as relatives, no longer had a natural place in the care.

They described that encountering committed nurses at the ward was essential to cope with the new situation after the transfer from the ICU. They longed to trust the nurse’s ability and healthcare quality but were often worried about their loved ones. When relatives experienced care encounters in the general ward as deficient, they expressed that they felt anxious, stressed, and vulnerable.

Wanting to be seen as an important piece of the puzzle

In this subtheme, relatives described how they wanted to be seen as an important piece of the puzzle in the overall care of their loved ones. They were ‘needing continuous information from the nurse’ and ‘wishing to be seen as a resource by the nurse´.

Needing continuous information from the nurse

Relatives described that they needed to obtain continuous information from the nurses caring for their loved ones. Information was expressed as an essential part of care encounters, and relatives often made comparisons between how they received continuous information in the ICU. An information flow gave them a feeling of knowing what was going on, whereas the lack of information in the general ward made relatives feel lost.

Relatives felt confused when they experienced a lack of routine and structure in how nurses provided information. They expressed that they constantly needed to ask for information, a struggle that exhausted and annoyed them. It was also challenging to know what information was important to ask for, making them worried about missing out on information.

The quality of the given information was important. Some nurses provided relatives with information contradicting what the other nurses had already told them. This made relatives feel even more confused and anxious when they could not determine who was telling the truth about a specific situation. ‘It is like this. Information about what is happening is the most important thing when you are in the middle of this situation. We need to know why certain things are done’. – Relative 2. However, relatives said they understood the nurses’ difficulty in informing them when they visited the ward when nurses should be doing other things. Therefore, there was a desire to have predetermined occasions when nurses could provide information about the status and what was happening.

Information about what happened to their loved ones was also performed as care encounters via phone calls. Reliability that nurses would deliver promised information was essential for the relative. They described a wish to get in touch with the nurse in charge by phone at any time of the day to be updated about their loved ones, giving them a feeling of calm and security. However, nurses were sometimes unavailable to provide information, even during phone hours. Relatives described how they were assured by other healthcare personnel that they would be contacted when nurses had the opportunity to do so. This caused stress in relatives as it meant that they would never know how long they had to wait to be phoned back, and it could require several phone calls before being able to get in touch. When relatives were requested to wait and use specific telephone hours, it made them anxious and frustrated, wondering if something bad had occurred. ‘I had to wait until the phone call hour, and it was quite frustrating […] somehow, I was thinking “maybe this isn’t going to be all right….” Not being able to find out, yes, made me anxious. – Relative 6.

Wishing to be seen as a resource by the nurse

Relatives wished to be seen as a resource by nurses and wanted to be welcomed and included as an equal part. They appreciated being given the opportunity to contribute with their own knowledge about their loved one, feeling belonged and as an important part of care. Being involved gave relatives a sense of structure and security and helped them understand what was happening and prepare for their loved one coming home. If they could come and go as they pleased at the ward, it gave them a sense of belonging, calmness, and security. Relatives tried to be a part of the care by sharing ideas and providing suggestions for treatment, demanding that their loved one’s needs should be met. However, they expressed that nurses did not always respond to this in a positive manner. Relatives described occasions when nurses told them not to speculate about treatments when they did not have education in medicine or nursing, which made them feel disconnected.

Relatives also wanted to share their personal knowledge of their loved ones with nurses for better care. They knew personal needs and quickly recognised and saw their loved one’s status and condition. Some relatives were disappointed when they had to give the nurse the same information repeatedly. They meant that the nurse should memorise or include the information in the patient record for other nurses to read. This caused frustration. According to relatives, their information assets were sometimes even neglected by nurses, leading to problems and trouble for their loved ones. ’Why could they not have listened to me earlier? Then, we could have avoided all this trouble’! – Relative 11. Relatives felt that the care encounter became easier if they had met the same nurse several times. However, relatives described encountering new nurses every time they visited the general ward since the nurses were continuously replaced. ‘There were a lot of different people there I did not know. I recognised them, but I did not remember who they were […] people were replaced all the time’. – Relative 7.

Being vigilant and worrying about the quality of care

Relatives described being vigilant, watching over their loved ones and worrying about the quality of care. They were ‘feeling concerned about nurse’s ability to provide good care’ and ‘wishing to encounter committed, compassionate nurses.

Feeling concerned about nurse’s ability to provide good care

Relatives who had loved ones being transferred from the ICU were vigilant about the quality of care and felt concerned about the nurses’ ability to provide good care. They described how they appreciated to encounter competent nurses with good communication skills but often met inexperienced nurses who seemed frightened and insecure doing their job. Encountering a competent nurse created a sense of stability and security, which inspired confidence. Furthermore, encountering an experienced nurse who seemed to have control of the situation, performing the tasks correctly, created a feeling that the nurse had the skills required to give the loved one care as needed. When the nurse treated their loved one as a unique person and possessed both medical and nursing knowledge and knew the loved one’s condition, relatives perceived the nurse as competent. Relatives described having to take on the nurse’s role when they thought the nurse lacked the proper skills or time to meet the loved one’s needs. They described how they were helping their loved ones take care of their hygiene, get dressed or get some food. Relatives also expressed fear about their loved one not receiving necessary interventions.

‘I phoned, and the person who answered really did not know. He answered completely wrong, saying that *** was not in pain at all and that there was nothing wrong with the X-ray! I was appalled. It was such a difference compared to earlier at the ICU’. – Relative 12.

They did not dare to leave their loved ones in the ward because they were uncertain whether the care given was what the loved one needed to get better. This felt like a huge, burdensome responsibility and made it difficult for them to trust the care and the nurse. Relatives felt they could not let go of control, which exhausted them.

‘I never forget when this nurse came in. I think she had five or six tablets in a small mug. She just poured it in ***’s mouth and I almost had an outburst […] he had huge difficulties swallowing…. I said, “I know how it has been before and how it should be done, and I thought you had received that information’. – Relative 13.

Wishing to encounter committed, compassionate nurses

Committed and compassionate nurses were great important to relatives in the encounters. If the nurse did not exhibit these attributes, the relatives became anxious for their loved one’s condition and were disappointed. A personal touch was appreciated, such as when nurses demonstrated that they knew the loved one as more than just a patient, amongst others. ‘[…] they gave the impression that they knew Dad; that is, they were familiar with him, knew what had happened, and were familiar with the planning’. – Relative 6. The relatives described committed nurses as those with personal engagement and the ability to listen and show interest, take them seriously, and show compassion, empathy, calmness, and care. They found it highly important that nurses took the initiative to introduce themselves and engage in everyday small talk. Occasionally, some nurses took the time to show their relatives slightly more interest. This was something the nurse did of their own accord and was not part of the routine of the ward.

‘It feels like it is a bit dependent on the person’s personality. It did not feel like it was something in the routines. I have no memory of that. It is more like it could be someone’s personality that makes you get a different kind of contact’. – Relative 4.

A lack of personal engagement from nurses made relatives feel sad and unseen. Relatives perceived these nurses as being uninterested and vague. Some nurses gave thoughtless, sarcastic answers to questions, which prompted feelings of unimportance and insecurity in relatives. They felt that these nurses were working only because they had to and not because they were compassionate and wanted to. This contributed to insecurity and feelings of exclusion.

Being appalled at the work pace at the ward

When arriving at the general ward, relatives were appalled at the work pace. The transition from the environment in the ICU to that in the ward was perceived as very burdensome by relatives. The environment gave a messy impression, which was almost a shock and made it difficult to encounter nurses. According to the relatives, many people ran around, and the nurses were stressed, always busy and caring for too many patients. It was difficult to gain the nurse’s attention because it was difficult even to find them in sight. ‘It was a different world from the ICU. Here, it felt like they just run around, and do not have time’. – Relative 1.

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