Continuity of care, as perceived by next of kin, was related to their caring role. This role was handled in different ways; consequently, the important aspects associated with healthcare contacts for continuity in care varied. Based on the assumptions of what might be beneficial for the patient, the next of kin assigned different meanings to the care contacts. The analysis revealed that the next of kin perceived that support from professionals was strongly associated with their experiences of continuity of care. Four categories and 10 subcategories revealed the next of kin's perceptions of care responsibility and different aspects of continuity of care (Table 2). In this paper, the interview responses associated with these four categories are presented in the text in italics.
Table 2 An overview of the categories and subcategories.
Categories
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Subcategories
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Want to be involved without being in charge
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Having access to healthcare
Assigning responsibility to healthcare providers
Being reinforced by regular follow-ups
Expects that care is coherent
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A desire to be in control without acting as the driving force in the care situation
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Staying up-to date
Acting as the patient's advocate
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A need for sustainability without being overlooked
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Well-functioning contacts over time
Being in good hands
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Focusing on making life meaningful while being preoccupied with caregiving activities
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Balancing existential concerns and caregiving activities
Staying engaged in life, despite caregiving activities
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Want to be involved without being in charge
The next of kin perceive continuity of care when they are involved on their own terms without being in charge. This means having access to healthcare providers and services, assigning responsibility to healthcare providers, being reinforced by regular follow-ups and having expectations that care is coherent.
Having access to healthcare
Continuity of care implies having access to healthcare providers and services. To next of kin, it is important to be able to easily get in touch with healthcare providers whenever they need, without being referred to different caregivers. The possibility of contacting the healthcare centre or the HF clinic for a visit or being referred to the emergency department for care, provides next of kin with a sense of security and makes life easier.
“There must be an agreement for us to come. He has been there three times now and received very good treatment. He has received test results after one hour. Doctors and the pacemaker nurse have come if there has been any problem with the heart or the pacemaker. We have both felt secure with the fact that heart failure care is accessible". (Interview 7)
Accessibility when booking and rebooking appointments, and the possibility of influencing the visit times, promotes continuity of care.
“When we have a visit time; it is no problem. But when entering the emergency department with dad who is old and has problems with the heart, I must be grateful if he quickly gets enrolled and gets laid in a bed, because some patients may be forced to stay in the emergency department all night”. (Interview 11)
To next of kin, it is important that healthcare is organised and user-friendly. In particular, this becomes important when access to care becomes difficult.
"Those who suffer from chronic heart failure will not normally get up until 11 in the morning. Therefore, it is not wise that they have to come to the heart failure clinic at eight in the morning for checks and blood tests. It is neither good nursing care nor respect for the patient or the next of kin”. (Interview 5)
Assigning responsibility to healthcare providers
Next of kin perceive continuity of care when they can assign responsibility to healthcare providers, without losing the opportunity to influence the different phases of the nursing process. Some next of kin are always engaged in every healthcare encounter, while others accompany the patient to the healthcare facilities, even if they do not participate.
”It was only the first time I followed him to the nurse, since then I have been sitting outside and waiting. // He can handle himself; I don’t need to participate”. (Interview 10)
Other next of kin always assign the responsibility to healthcare providers, especially when they feel uncertain about how to handle the situation.
"I’m not knowledgeable enough. No, it is better that they handle everything anyway! // I usually say that I drive you to the hospital and then the others can take care of the rest. I think it is easier that way. If I say something wrong, she would be completely crazy". (Interview 12)
Some perceive their care responsibility as a dilemma. On the one hand, they feel a relief about not having to take responsibility; on the other hand, they feel that it is wrong for them to not take on this responsibility.
”Healthcare doesn’t expect me to take responsibility; it’s probably more social expectations. There are, after all, unspoken demands on how to be a good relative. // I would like to have some life of my own. But when thinking of that this responsibility can go on for dozens of years more, it will, of course, have exceptional consequences for me as a relative”. (Interview 5)
Being reinforced by regular follow-ups
For next of kin, the experience of continuity in healthcare is strongly related to the care process; the participants emphasised the importance of follow-up. They noted that they felt a sense of security when follow-ups occur. They want an updated care plan, and they want planned examinations and sampling to be carried out on time and the results to be presented to them. The fact that healthcare professionals keep their promises seems to be strongly related to their perceptions of continuity of care.
“We have regular visits to the nurse. It’s a visit where the nurse checks how my husband reacts on the increased drug dosage that he gets. // I think the visits are good because we feel confident that someone closely follow up on blood value, blood pressure and how he feels over time”. (Interview 3)
Continuous follow-ups are perceived as being essential, and they increase the likelihood of receiving professional treatment and reduce the risk of acute deterioration and unnecessary hospitalisation.
”I want her to be checked often, not that it takes this long time. I don’t even remember when we were there last time with mom. Maybe one year ago! But they said it is the same situation; there is no change. It’s the same damage, the same place; but still, it’s been a year. We should know more”. (Interview 15)
Expects that care is coherent
The next of kin perceive continuity of care when the care process is coordinated, regardless of who the caregiver is. They are demanding professional collaboration with seamless care and treatment based on the patient's needs. However, they believe that continuity of care presupposes that the caregivers cooperate and that the caregiver that is responsible for coordination is clearly identified.
”The GP at the health centre regards that there are waterproof shots between the hospital and primary care. The hospital takes care of the heart and the health centre takes care of the rest. But the treatment must be continuous, wherever it takes place”. (Interview 6)
Feeling confident in this context includes receiving medical treatment without interruptions. This includes that the prescriptions are issued as promised and prescribed drugs are available at the pharmacy. Unfortunately, according to the next of kin, that is not always the case.
”When we were at the nurse last time, I pointed out that the medicines are not enough until the next visit. She promised to make sure that a new prescription was printed. But this was never done; there was no prescription. // Now when we do this week's pill box, then we must take from these pills with a lower dose. We will be able to do it this week but then there is no medicine left”. (Interview 2)
Continuing medical treatment also consists of pacemaker therapy, an essential part of HF treatment. This includes having access to the best possible equipment. It also means that healthcare professionals can regulate the pacemaker based on the patient's condition.
”The pacemaker has functioned without interruption, but we do have the best pacemaker, a "Rolls Royce" with a defibrillator”. (Interview 9)
A desire to be in control without acting as the driving force in the care situation
Next of kin perceive continuity of care when they feel involved and have control over what is happening in the care situation without being the driving force. By staying up-to-date and sometimes acting as the patient's advocate, they strive to facilitate the patient's complex illness situation.
Staying up-to date
Staying up-to date makes it easier for next of kin to manage the illness situation. To preserve continuity of care, next of kin use the gathered information from healthcare visits, the internet and brochures or friends. Some of them actively exchange information during the visits, partly to support the patient in the communication process and partly to obtain answers to their own questions and concerns.
”I ask quite a lot and I don’t think that they experienced me as bothersome when I ask. I want facts, because when we get home, he doesn't remember and then I have to be able to tell what they said. He can't always take it; it differs from time to time, but of course he trusts that we are four ears”. (Interview 7)
Next of kin gain a deeper understanding of the potential problems and how to deal with them by staying up-to date. The more skilled they are at observing and supporting the patient, the easier they can face their own concerns and the uncertainty caused by the illness.
”The doctor and the nurse don’t really have the same idea about diuretic treatment. The nurse doesn’t want him to use it, so she removes them and the doctor adds them. But I don’t give a shit about it! He still gets a whole tablet of diuretic, because he coughs much more when we try to reduce to half a tablet”. (Interview 2)
Acting as the patient's advocate
Next of kin perceive continuity of care when acting as the patient's advocate. To mediate the patient's needs, and understand and manage what is said during the visits, they must take the initiative during the encounters. This is particularly essential when the information between healthcare providers is not coordinated.
”There are no follow-ups from the hospital, but sometimes they say that you should contact your health centre. But when you do that, they don’t receive any papers or journal about him. Then you have to go there and tell everything over and over again. That’s tough. You have to be firm as a relative to speak for a patient who cannot speak for himself”. (Interview 6)
Several of the participants highlighted the importance of acting as a link between the patient and the care the patient receives. This is especially important when the patient neither understands the language nor feels at home in the Swedish culture. In these situations, the next of kin acts as an interpreter and tries to mediate the patient's needs and wishes, linguistically.
”Mom and dad don’t feel at home in Sweden; they feel outside the healthcare system. It is a difference if I interpret or if they are alone with an authorised interpreter. It’s not just about informing or understanding the language; the authorised interpreter doesn’t know my parent’s situation at all, and everything becomes difficult”. (Interview 15)
The next of kin stated that they feel obligated when acting as the patient's advocate, whether they want to or not. While they would like to get away from their care responsibilities, it often works the other way around. Some of them perceive that they are compelled to act and take responsibility for the care when the patient is unable to act accordingly.
“I do not want to feel that I am responsible for the entire care, being a secretary for the care or act as some kind of assistant nurse who has control so that all medications are correctly handle; but for me, it has actually become like that”. (Interview 2)
A need for sustainability without being overlooked
According to the next of kin's perceptions, continuity of care also means having long-term and well-functioning contacts with healthcare providers over time without being overlooked. In this context, a feeling of being in good hands emerges from the next of kin's descriptions.
Well-functioning professional healthcare contacts over time
Well-functioning professional healthcare contacts over time includes encountering nurses or general practitioners (GP) who know the patient's history, who can reconnect to the previous visits and who care about the patient, the next of kin and their situation. Encounters with openness, understanding and respect create a mutual and trustworthy relationship between the patient, the next of kin and the healthcare professionals.
”The heart failure clinic means a lot! It feels like we have been connected much longer than a few years. The heart failure nurse is a wonderful person; it feels like she cares a lot about us. She remembers us from time to time and what we have around us”. (Interview 6)
Some next of kin expressed concern that well-functioning relations would end, while others did not, because they are convinced of being cared for regardless of whom they encounter. For next of kin, both personal chemistry and a personal relationship are required to maintain continuity of care with the patient’s healthcare contacts.
”The importance of encountering the same person depends on how that person is! Some have been good, others have not. Some persons we didn’t like, but there isn’t much you can do. You have to be patient, but I demand that they take their job seriously”. (Interview 4)
The interviewees emphasised the importance of getting to know healthcare professionals to establish well-functioning healthcare contacts over time. Next of kin experience continuity of care when they understand the staff's actions, obtain relevant information and realise that the staff has the patient's best interests in mind.
”You know it’s a permanent staff, a nurse who always works with this, who has skills. It is of tremendous importance, that you can trust them, read them and see that they can do their thing”. (Interview 2)
Being in good hands
Continuity of care is perceived when next of kin have a feeling of being in good hands, wherever the visits take place. The interviewees perceived that being recognised and confirmed by the healthcare staff in a personal way is very important. This feeling is reinforced by the fact that the healthcare staff greets them and takes time to talk with them.
”It means a lot that they know who we are, that they recognise us and that they greet us”. (Interview 1)
External factors, such as knowing where the care settings are located geographically, are important for both planned and emergency visits. It is also important that, during the visit, the atmosphere is permeated by positive attitudes.
”It was absolutely incredible at the hospital; he was really taken care of there. // It was so nice, and so clean, and so kind staff, all the way down to the cleaner. They came and asked if he wanted something to eat and drink. They were so kind; he could have stayed there for a week.” (Interview 10)
Focusing on making life meaningful while being preoccupied with caregiving activities
When next of kin are able to focus on making life meaningful despite their role as a caregiver, they perceive continuity of care. This is also evident when they are able to balance their existential concerns with regard to the patient's health and well-being, as well as going on living despite their caregiving activities.
Balancing existential concerns and caregiving activities
Next of kin believe that continuity of care affects their experience of life continuity, and they have to balance existential concerns and care. Although they encounter existential problems, they are trying to preserve continuity in life by addressing concerns, engaging in short-term planning and being present in the moment. Being close to a patient with HF entails caring for that person until the end of life; this can create worries about how to get professional help when the patient's condition deteriorates.
“So far, my husband can be alone for a few days; but when he can't be that anymore, well, then you have to talk to the municipality or something to get relief. That's when I think if and not when, but I think if so, then we have to solve it then”. (Interview 3)
Existential problems that arise from the illness situation must be dealt with until the end of life. As the disease progresses, the next of kin must face the fact that the patient changes as a person and that this affects the relationship, both emotionally and practically.
“I probably haven't realised how sick she is. In the past, she was very energetic. She arranged everything and initiated happenings. She was the one who initiated spex and excursions. She was impelling, but now it’s nothing. She is busy by herself and her illness”. (Interview 8)
Staying engaged in life, despite caregiving activities
The next of kin perceive that their social life is increasingly limited as the patient's health condition deteriorates. In order to achieve balance in life and go on living, they try to preserve activities of daily living by integrating care contacts into their life planning.
“We have the calendar, where everything has to be noted regarding the healthcare visits and other things, because we have a little life outside of the healthcare system. Well, the holiday we had been thinking about this spring we must put aside; maybe we can take a last-minute trip, if we get a week free from healthcare”. (Interview 2)
Going on living despite caring for someone with an illness is possible when next of kin are supported by family and friends. Combining care activities and everyday life may entail getting help with practical tasks and following the patient to healthcare visits. The interviewees noted that it was important to have someone to talk to in confidence about their life situation.
“My girlfriend has been through the same thing as I before she became a widow. She understands very well what this is all about and we talk a lot about our feelings”. (Interview 7)
In order to support and keep the family together, next of kin takes responsibility for the patient's everyday life. This means never leaving the patient alone, not even during a hospital stay.
”My dad was hospitalised two months ago. I and my family tried to sneak, hide and sit in the corridor, not to disturb the staff. But they were angry with us because we were there; but I cannot leave my parents alone at the hospital”. (Interview 15)