The theoretical model that resulted from the study illustrated that patients in need of 24-hour home care strive for control and safe care (Table ). The initial analysis revealed a number of exposed states, which described patients’ feelings of lack of control, being in unsafe hands and insecure in the care system, and thus experiencing a care system inappropriate to their needs. The core process identified was Grasping the lifeline, which describes the compensatory process that patients used to make up for their exposed state. The process termed grasping the lifeline included three sub processes that described patient striving: 1) Taking control, 2) seeking safe hands, and 3) navigating in the care system. When patients could be said to be holding on to the lifeline their striving showed the desired effect and they felt in control and safe. They could be described as losing the lifeline when they gave up their striving or the striving had no effect, and the patient felt a lack of control and in unsafe care. The results of the compensatory processes were influenced by the interaction between the patients and their HC assistants and were different for each individual depending on how the sub processes interacted. This clarified the variation in the data. Furthermore, the theoretical model should be seen as nonlinear and nonstatic because the exposed states, as well as the patients’ abilities to compensate, may change over time.
Theoretical model Grasping the lifeline
The patients tried to take control when cared for at home, despite their large care needs and dependency. Their dependency made them feel at risk of being mastered by others and having HC assistants not fitted to their needs. Their desire to participate in decisions that concerned themselves and their care was strong, which made them strive to be their own masters and to select their own HC assistants, to give a feeling of control (Table ).
Striving to be one’s own master
When striving to be their own master, patients felt they needed to fight for their rights: “They are here for me and not the other way around”. One patient believed she needed more help and strived hard to get her care planners to understand her needs.
"I will not stop fighting for my rights. Now I have two daytime HC assistants and one during the night. But I want two at all times (p)."
If the patient was unable to strive for control because of poor health a HC assistants could step in. One patient was unable to convey her desires verbally. “You need to interpret her correctly,” the HC assistant said about her.
Being mastered by others
When patients lacked control they were not given the opportunity to make decisions and felt mastered by others. “Everyone gets to decide except me,” one patient said when HC assistants decided where to place the furniture in her own apartment. Another patient experienced being mastered by a health care professional.
"The physiotherapist decides everything and she always thinks she is right. I had a wheelchair I liked but she came and changed to another one, without asking me. This one I can’t use indoors and I want my old chair back. I told her “I’m the one with needs – not you!” (p)"
One’s own master
When home care was the choice of the patient, the choice created a feeling of satisfaction: “To decide for yourself, to be able to live at home, nothing can compare with that!” one patient said. The HC assistant’s attitude to the patient’s right to decide was also important in terms of feeling one’s own master. “Yes, it is her apartment, she decides!” one HC assistant said.
Selecting HC assistants
The patients were dependent on their HC assistants and thus wished to take part in the selection process. “I really want to participate in the selection of HC assistants. Not everybody fits in here!” one patient said. To know in advance which HC assistant was coming was important, and the patients objected strongly if the HC assistants were not selected to fit their needs. “I have learned to protest loudly if they try to send HC assistants I don’t like”. When she needed to leave the security of the home, one patient described how she tried actively to select the HC assistants she could trust.
"When I’m leaving the house for a doctor’s visit I want to select certain HC assistants to come along. (p)"
Having HC assistants not fitted to their needs
A lack of satisfaction with their HC assistants created substantial concerns and worries for the patients. One patient said: “Some of them shouldn’t have come in the first place. They should work in something else!” Owing to a high turnover rate among HC assistants, the patients were faced constantly with new persons caring for them, which was a stressful experience. “I get new HC assistants all the time” said one patient, who had 17 HC assistants and new persons coming for introductory shifts several times a week. The temporary HC assistants created most concern. “It feels like they hire people right from the street,” one patient said.
HC assistants fitted to their needs
Patients who were allowed to participate in the selection of HC assistants felt in control. One patient involved in the selection of new HC assistants said that she now had HC assistants she could trust. Another way of having control was the ability to decide who had the required skill when it came to difficult care situations, such as helping with showering or using hoists and other medical or technical equipment.
Seeking safe hands
The patients tried to seek safe hands when cared for by HC assistants, because this rendered them at risk of feeling unsafe during care procedures as well as feeling unseen and unheard. In their striving to feel safe they instructed their unskilled HC assistants in care procedures and also tried to be seen and heard (Table ).
Instructing unskilled HC assistants
When striving to feel safe, the patients instructed new or unskilled HC assistants in care procedures. “I have shown the girls, in case something happens. So I have some control”, one patient said. One HC assistant noticed that when her patient got stressed or irritated she started saying: “do it like this, don’t do it like that!”
Feeling unsafe in care procedures
The patients felt at risk of not having their care needs fulfilled because of unskilled HC assistants. One patient said, “They get it wrong many times. But I can’t do it myself so I have to live with it”. Lack of knowledge was also supported by one HC assistant: “I know nothing of my patients’ medical history. Where I worked before there was a file with information but I haven’t found one here.”
Feeling safe during care procedures
The performance of care procedures by an experienced HC assistant with the skills to handle the medical and technical equipment correctly made the patient relaxed and safe.
"The HC assistant handles the hoist with experienced hands. For a moment the patient is hanging in the air before gradually being lowered down to the wheel chair. (obs.)"
"The HC assistant puts her hand on the patient’s chest in order to detect secretion in the airways. She then prepares the suction supplies and starts to remove the secretion from the tracheotomy. She is quiet and works efficiently. (obs.)"
Trying to be seen and heard
Communication with the HC assistants was central to the patients as they strived to be seen and heard. As a consequence, language skills were an important issue. One patient, who had experienced misunderstandings during care, now demanded that the HC assistants spoke sufficient Swedish for them to understand each other, “so that things don’t go totally wrong”. Patients who could not move needed HC assistants to be close in order to communicate their needs. One patient said: “I do not dare to have the door closed, I need to hear them at all times,” and another said “When my nose is itching I have to call to get attention, so they come and scratch it for me – I am totally helpless!” The patient with impaired speech due to a tracheotomy was able to obtain the attention of the HC assistants by looking at them, and sometimes a glance was enough for the HC assistant to understand her needs.
Feeling unseen and unheard
The observations revealed several situations in which the patients appeared to be unseen and unheard. For example, care situations were performed without the HC assistants engaging with or listening to the patient, which rendered her unseen by the HC assistants. During one observation, the patient lay completely naked in bed, with three persons in the room, while the HC assistants kept talking to each other. Another observation revealed a competing interest from the television.
"The TV is turned on, at a very high volume. The HC assistant manipulates the feeding tube with one hand and watches the TV at the same time. She changes TV-channel with the remote control using the other hand and keeps on watching. (obs.)"
Lack of communication skills in the HC assistant could create feelings of being unheard. When the HC assistant did not speak or understand Swedish (the patient’s language), the patient felt unsafe. One patient, in despair when her HC assistants did not understand the instructions on what to do, said: “If I tell them one thing and they do the total opposite, then something is wrong”.
Seen and heard
The response of the HC assistants to the patients’ striving to be seen and heard seemed to depend on the experience and competence of the HC assistants. One way of showing patients that they were seen and heard, was through caring physical contact.
"“Come here darling.” The HC assistant touches the patient gently and turns her towards herself. The other HC assistant continues with the washing procedure. (obs.)"
Another way of showing patients that they were seen and heard was when the HC assistant, by knowing the patient’s wishes, could fulfill specific needs.
"When the washing procedure is done the HC assistant prepares and lights a cigarette and hands it to the patient. The HC assistant holds the cigarette. No words are spoken (obs.)"
When the patient could not verbalise her wishes, the strivings to be seen and heard were less obvious, thus demanding close attention from the HC assistant.
"You must learn when she does so and so with her eyes…. I do not know if it is correct or wrong, but I am almost always right with what she wants to say. (a)"
Navigating the care system
The patients tried to navigate the care system when they felt insecure in a care system that was not fitted to their needs, i.e. they felt a lack of interest from their professional care providers as well as a lack of connection within the care system. To compensate for this lack, the patients tried to maintain their own contacts as well as coordinating their own care within the care system, sometimes with help from their HC assistants. The patients felt secure in the care system when they experienced good contact with the professional care providers as well as connection within the care system (Table ).
Making their own contacts
The patients established their own contacts when they experienced a lack of interest from their professional care providers. One patient was satisfied because she had established direct contact with the hospital instead of having to go through the primary care centre: “Nowadays I just call one of the doctors at the hospital and they help me”.
Lack of interest
The patients experienced a lack of interest from professional care providers.
"Sometimes when I call the home care supervisors they say they can’t help me. I don’t think they can say that. They are there for me! (p)"
According to the patients and their HC assistants, few professional care providers made home visits and contacts were sparse. Sometimes, meetings that concerned the patients were held outside the patient’s home, which prevented them attending. Patients also expressed that they felt insecure when the routines did not work and they thought it was due to poor planning and lack of interest in their situation. One patient said: “They (the home care supervisors) didn’t have it under control and there were many things to complain about”. One patient felt that she was not important owing to un-kept promises.
"They promised me an outdoor wheelchair. But everything was postponed and I ended up sitting indoors all summer long. (p)"
The HC assistants of the patient who required a home ventilator thought that the health care professionals showed a lack of interest because they found the patient too complicated and did not want to learn more about her situation. The HC assistants said they had to beg for a home visit when the patient needed to be seen by the physician, because his office had no elevator, which made transport complicated. When the physician finally came, he stopped at the doorstep, totally startled when “he finally understood how complicated she (the patient) was,” one HC assistant said.
One patient experienced good contact with her home care supervisors following a reorganisation within her community. The improvements were evident to her HC assistants as well.
"When I first started here I came to a workplace extremely well organized with good routines. All things in the right spot. (a)."
Good contact with the health care professionals meant that patients became known within the care system. One patient had undergone surgery three years ago and now had her own medical chart at the local hospital. “She’s been living in this city with her large care needs and her home ventilator her entire adult life and they (the hospital) didn’t even know she existed!” one HC assistant claimed.
Coordinating their own care
The patients coordinated their own care when they experienced a lack of collaboration within the care system. One patient coordinated the care herself and did not want to change that. “One professional care provider has nothing to do with the other,” she said. Another patient, with impaired verbal skills due to a tracheotomy, had to rely on her HC assistants and their ability to take over contacts and coordination. The HC assistants argued that, by coordinating care when there was no collaboration among professional care providers, they could solve small problems before they increased in magnitude and became dangerous, which prevented complications and even hospitalisation of the patient.
Lack of connection within the care system
Patients as well as their HC assistants experienced a lack of connection within the care system, which resulted in no collaboration between the professional care providers.
"No, they do not speak with each other. They are on different planets, totally separated from each other. (p)"
For one patient, the lack of connection was the result of the district nurse and the physician coming from different primary care centres.
"The patient is still listed at Primary Care Centre A, where she used to live. There she has her primary physician. But her district nurse comes from Primary Care Centre B, where she lives now, so they cannot collaborate, as they need. (a)"
Being responsible for the safety of the patients, the HC assistant often had to turn to the professional care providers for advice and help. They often felt they had to step in and coordinate because of a lack of collaboration.
"As soon as she needs medical care we have to call several persons. They can’t even call or send a mail to each other (a)."
The lack of connection became particularly important when a patient was in need of acute care and could not possibly coordinate her own care but had to rely on the HC assistants. The HC assistants did not always know who to contact or experienced lack of interest when they contacted the health care professional they thought appropriate. Owing to unclear routines, the HC assistants felt unsupported when they needed assistance with the patient. During evenings and nights, when the regular primary care centre was closed, the HC assistants found it difficult to get the required assistance. “We called but no one answered,” one HC assistant said. Moreover, difficulties in obtaining help from the national emergency number (112) were described. When one patient needed acute care the HC assistants were startled when they called 112 and realised they could not expect immediate assistance. “We dialed 112 in order to get an ambulance. But we were told they did not have one to send at that time!” Given that they were responsible for a patient on a home ventilator, the lack of help was described as very stressful by the HC assistants.
"They said they wouldn’t take her in the ambulance because she needed to be put on the ventilator, and it had to be a special ambulance for that. (a)."
Connection within the care system
When the patient experienced good contact with, as well as collaboration between, professional care providers in the care system she felt secure.
"I have never experienced any problems. It works smoothly with all the contacts: doctors, home health and social insurance office, you name it. (p)"
When there was collaboration, it usually resulted in good routines for acute care. For one patient, a routine to treat acute infections had made life much easier, with tests being taken at home and prescriptions called in by a doctor at the local hospital. Before the routine was established, she had to visit the emergency room frequently.
To summarise, three variations on how patients and their HC assistants experienced the care system are shown in Figure : (A) Insecure in the care system, illustrated by an absence of connections between the patient/HC assistant and the professional care providers; (B) Navigating the care system, illustrated by the compensatory process when the patient/HC assistant maintained their contacts with the professional care providers and coordinated the care themselves; (C) Secure in the care system, illustrated by existing connections between all actors involved.
Figure 1 The care system from the perspectives of the patients and their HC assistants. A. Insecure in the care system. Lack of interest from professional care providers and lack of connection in the care system. B. Navigating the care system. Patients and/or (more ...)