Sage Journals: Discover world-class research

Abstract

The trend shows that more people are choosing to die at home. Since at home palliative care is often provided by district nurses, their work will be affected, and the burden will increase. The aim of this study was to illuminate district nurses' experiences of providing palliative care in the home. Qualitative semi-structured interviews were conducted with 12 district nurses. The interviews were analyzed according to the qualitative content analysis methods that Graneheim and Lundman describe. Findings consist of three main categories with nine subcategories. The conclusion is that collaboration with others is essential. Providing palliative care in the home is both emotionally rewarding and demanding, and the work is additionally time and expertise consuming. District nurses want more resources and organizational changes, such as access to doctors and a palliative home care team who only work with these patients. This would be an advantage both for district nurses and the patients.

Keywords

district nurses interview study palliative care qualitative

Introduction

It appears that the number of people who want to die at home is increasing, both in Sweden and internationally.^1–3 This means that more people will need palliative care in the home, which requires more advanced healthcare activities to be performed at home.^1,4–6

Palliative care is the overall care of patients whose disease does not respond to curative treatment.⁷ Palliative care, among other things, means that painful symptoms are relieved, that death is considered a normal process that should not be accelerated or delayed, that physical, psychosocial and spiritual aspects are integrated into patient care and that the relatives are supported. Good palliative care is based on the four cornerstones of symptom relief, multiprofessional collaboration, communication, and relationships and support for related persons.^3,4 Palliative care in Sweden is also linked to the model for person-centered palliative care, the 6 S model, which includes the concepts of self-image, self-determination, social relations, contexts, strategies, and symptom relief.⁸ The 6 S model can be linked to the WHO's definition of palliative care, and the four cornerstones and can serve as support for district nurses and be used to quality assure the palliative care in the home. The purpose of the model is to see the patient as a person and to promote patients' opportunities for participation in their care and to facilitate as good a life as possible at the end of life. The 6 S model puts physical, mental, social, spiritual and existential needs at the center, based on a holistic view. The patient's description of their own situation and what is important is the given starting point for the care.

In some countries, efforts have been made to improve the opportunities for people to die in their homes,^6,9 and the possibilities of receiving palliative care at home have increased, but these opportunities are not geographically equal. There are large variations, both in Sweden and in other countries, and one reason may be that some treatments are more difficult to carry out in the home because of the circumstances surrounding them.^4,9 It may be because the specialized palliative home care system is not well developed in some municipalities, and there may also be limited access to district nurses who have enough knowledge. District nurses have a great responsibility in home care, including many activities ranging from preventive health work to palliative care, with patients of all ages.¹⁰ Palliative care in the home is often provided by district nurses,^1,11–13 and palliative care can be both complex, unpredictable, and time consuming, and include other professions,¹⁴ which can be challenging for the district nurses.^11,15–17 District nurses have a holistic view of the patient and provide nursing, symptom management, emotional support, and coordinate services for patients and their families.^1,11,18,19 This type of care is complex and requires both medical knowledge and psychosocial competence to respond to the physical, psychosocial, and spiritual needs of the patients and their relatives,¹⁵ and there is a requirement to repeatedly switch between providing palliative care and more routine care, which may have an emotional effect on district nurses. Palliative care is often unpredictable and time consuming, which can be a challenge for district nurses and can affect the quality of the care that is offered to the patients.^11,20 The limitation is also due to the fact that some district nurses feel that they lack knowledge and education in palliative care in order to be able to provide good palliative care in the home, for example, in areas related to symptom management, technical skills,¹⁵ and the handling of difficult situations that can arise.^1,11,12,21 District nurses also experience difficulties communicating with dying patients and their relatives.^1,12,18,22 It is also especially difficult to talk about difficult messages and answer difficult questions about death.¹ This can result in district nurses rejecting patients and their families and avoiding meaningful and important conversations. It is therefore important to understand how district nurses work to provide palliative care at home.¹⁸ Even though district nurses have a central role in providing palliative care in the home,^{1,11,21,23,24} knowledge of district nurses' experiences of what it means to carry out this work is inadequately described in research. Many of the previous studies that have been conducted can also be considered out of date because of the developments that home healthcare has undergone and the changed role that district nurses now have.²⁵ Existing research shows that there is not enough information to guide improvements for district nurses working to provide palliative care in homes.^11,18 Because of district nurses' often-central role in palliative care at home, it is reasonable to assume that their own experiences from their work can contribute to an increased understanding of how the work can be improved in practice. This may apply to the care of the patients and their relatives, but also to the district nurses' work situation. Therefore, the aim of this study was to illuminate district nurses' experiences of providing palliative care in the home.

Method

The study was conducted using a qualitative method and an inductive approach. A qualitative approach is suitable to use when experiences are to be studied, since data collected are in the form of descriptive narrative and provide the opportunity for a deeper understanding of the phenomenon studied. An inductive approach was chosen where the researcher intended to start from the participants’ lived experiences of the phenomenon.²⁶ The sample for the study consisted of 12 district nurses (three men and nine women) with a specialist nursing education who had been working as district nurses for between 7 and 34 years (mean 21 years). The nurses had worked in home care for between 5 and 34 years (mean 21 years), which included experience of providing palliative care in the home. Of the included 12 district nurses, eight had previous education in palliative care. The purpose of the selection was to recruit participants who shared some characteristic features that represented what needed to be studied. To recruit participants, the nurses’ managers were contacted and were thus used as ‘door openers’ to gain access to the intended field of study.²⁶ The managers informed the district nurses about the study and those who wanted to participate in the study expressed an interest to their manager, who then informed the researchers. The district nurses were then contacted by telephone by the researchers to determine the time and place for their interview. All district nurses who participated in the study received verbal and written information about the study before the interview, and in connection with this, verbal consent was also obtained for participation in the study.

Semi-structured interviews were chosen as the data collection method to seek understanding of the participants' perceived experiences of providing palliative care in the home. During the interviews, a question guide with open questions and follow-up questions was used (see Table 1). This was to ensure that certain subjects were covered in the interviews and to obtain rich and detailed information. The questions made it possible for the participants to give detailed stories of their experiences of providing palliative care in the home in their own words, and thus encouraged in-depth study.²⁶

Table 1.

Question guide.

Background questions • How long have you been working as a district nurse? • How long have you been working with home care? • What kind of education do you have in palliative care? Questions • Tell me about your experience of providing palliative care in the home? (Can you further develop it; can you give examples?) • Tell me what you think is positive about providing palliative care in the home? (Can you further develop it; can you give examples?) • Tell me if you think there are any difficulties/obstacles to providing palliative care in the home? (Can you further develop it; can you give examples?) • Is there anything that can/needs to be improved in palliative home care? (Can you give some suggestions on how?) • Is there anything more you want to add before we finish?

A pilot interview was conducted to evaluate the question guide and implementation. This interview was included in the analyses and no changes in the guide was made as a result. The interviews were conducted through personal meetings at the nurses' workplaces in undisturbed rooms. All interviews were recorded after approval from the participants. Participants could walk away from working hours to participate, and the interviews lasted between 20 and 48 minutes, with an average time of about 30 minutes. The recorded material was transcribed verbatim. The researchers had some preunderstanding of the area being studied from having worked as nurses with palliative patients in hospitals. The researchers, however, had no experience of having worked as district nurses in palliative care in the home, and thus lacked specific understanding of the studied context. The transcribed material from the study was analyzed according to the qualitative content analysis described by Graneheim and Lundman.²⁷ Manifest content analysis was used as it describes what the nurses were expressing during the interviews. All the interview texts were read through several times to get a feel for the whole content. Thereafter, sentences were highlighted based on the purpose of the study. The sentences were then condensed so that the text would be shorter and more manageable. Condensation is a process for shortening the text while preserving the essence of it.²⁷ After the condensation, the material was coded. A code is a label on a sentence unit that briefly describes its content.²⁷ After the coding, three categories and nine subcategories that answered the purpose of the study appeared. See Table 2 for an analysis example.

Table 2.

Analysis example.

Meaning unit	Condensed meaning unit	Code	Subcategory	Category
You want to be good for everyone. It is really important, not only for the patient but also for the relatives in the home. At home it is so very much the family, and I like as well, get everyone involved.	In the home, it must be good for everyone, both patient and relatives. You want to get everyone involved, because in the homes it is very much about the family.	Taking into account both patient and relatives.	Patient and family collaboration	Collaboration for well-functioning palliative care
You will know the patient for a fairly long time if you have a palliative patient at home. Both the family and the patient.	You get to know both the patient and relatives for a long time when palliative patients are cared for at home.	Get to know the patient and relatives	Close relationship	Emotional
The difficulties are then if there will be a lot of pumps and stuff, which one should run and change and it beeps and stuff, then it can be a concern instead of the patient and relatives.	If there are a lot of pumps and stuff, and you have to run and change and it beeps etc., then it can become a concern for patient and relatives.	Medicine technology can become a concern	Technical development	Knowledge demanding
If it is difficult with the language then it is difficult. Then you have to have someone who interprets. And it is not quite the same thing.	If they speak a different language and you have to have an interpreter, there may be difficulties because it is not the same when someone interprets.	Interpreter for language difficulties	Communication	Knowledge demanding

This study complies with the Declaration of Helsinki, prescribing research involving humans should fulfill the prerequisite of being valuable to mankind. The Declaration of Helsinki also prescribes the use of informed consent, comprising the possibility to discontinue participation at any time.²⁸ Prior to the study, an ethical self-examination was conducted, and an application for ethical advice was sent to the Ethics Committee Southeast for its opinion. The Ethics Committee saw no obstacles to conducting the study from an ethical perspective (Dnr. EPK 235-2014). The participants in the study received information both verbally and in writing about the purpose of the study, and they understood that they could interrupt their participation at any time without having to state the reason. Furthermore, it was important to protect the participants' opinions, and so the participants were anonymous to all unauthorized persons. Data collected have therefore been anonymized so that the participants' identities are not disclosed.²⁶ The participants' statements have been allocated to Particiapant 1, 2, 3, etc. in the results. The participants were informed that all study material would be handled with confidentiality, and information was also given about who had access to the material. The recorded interviews and the transcribed material were stored so that only the researchers had access.

Results

The results consist of three categories and nine subcategories presented in Table 3.

Table 3.

Presentation of categories and subcategories.

Category	Subcategory
Collaboration for well-functioning palliative care	Patient and family collaboration Team collaboration
Emotional	Close relationship Young patients Time-consuming work
Knowledge demanding	Communication Main responsibility for coordination Symptom management Technical development

Collaboration for well-functioning palliative care

This category represents how district nurses feel that collaboration with others is required to be able to provide good palliative care in the home. Collaboration takes place with the patient, the family, and with other professions. The category is presented in two subcategories: Patient and family collaboration and Team collaboration.

Patient and family collaboration

District nurses illustrate that the family situation in the home is very important, and that collaboration with both patients and relatives is required when they provide palliative care at home. They highlight the importance of considering both the patients' and the relatives' wishes to be able to create a sense of security in the home for both parties. Since relatives are of great importance for the possibility of conducting palliative care at home, because they often take care of the patient, it is important to collaborate well with them.

In the homes, a lot of focus is on the family, and unless both the patient and relatives are on the same page and want this, it will not work in the home. (P6)

The participants feel that good collaboration usually arises in the home, and it usually leads to a quiet and safe environment for both patients and the family. The district nurses highlight that palliative care in the home becomes easier to give the longer they have known the patient and relatives because the collaboration works better then.

Team collaboration

District nurses highlight the importance of team collaboration with other professions, to use the skills available for good palliative care to be conducted. They also emphasize the importance of collaboration with occupational therapists, physiotherapists, curators, and priests. Some district nurses feel that collaboration with priests is not always used to the extent that it should be. They believe that a spiritual representative is often forgotten, even though many patients and relatives have spiritual issues. District nurses also illuminate the collaboration with the palliative team from the hospital. This collaboration is perceived positively by district nurses and provides security for both themselves, the patients, and relatives.

It's very much about working in a multiprofessional way ... It's important to use the skills available to be able to offer good palliative care at home. (P1)

Furthermore, the district nurses feel that a prerequisite for being able to provide good palliative care in the home is that well prepared care planning is carried out beforehand, and that all parties are informed about the situation. If everyone knows what is going to happen, the patient and relatives often feel secure in the home. Some district nurses, however, illuminate that the medical record system is an obstacle to collaboration with hospitals and primary care since they have different systems. This can lead to a lack of communication, since district nurses do not have access to the same information. The participants also highlight that collaboration with doctors is important to be able to conduct good palliative care in the home. Some district nurses feel that collaboration with doctors works excellently because they believe that the doctors are easily accessible and prioritize the patients who are cared for palliatively. Others, on the other hand, experience problems in collaboration with doctors, both in terms of continuity, accessibility, interest, and competence, which can cause medical problems to occur. District nurses feel that it would be desirable to have a doctor in the municipality who works solely with these patients, because the doctor creates a sense of security for the patient, relatives, and themselves, as staff.

It's important that doctors have scheduled home nursing times for these patients so that one can make home visits. Unfortunately, not everyone has it, but it facilitates care and it provides a huge sense of security for the patient, for relatives, and also for me as a nurse. (P3)

Furthermore, district nurses illuminate the collaboration with home care services, and also highlight that a palliative home care team is desirable for these patients.

Emotional

This category represents how district nurses describe that they are personally affected by providing palliative care in the home as both rewarding and demanding. They describe having a close and more emotional relationship with the family in the home. They also highlight that it takes a lot of time to provide palliative care at home, which affects them. Some district nurses experience the job affects them more personally than others, especially when they care for young patients. All district nurses agree that working in palliative care in the home feels positive and rewarding as it gives a lot back. They find that they make a difference and really have something to offer these patients. Some district nurses, however, feel that it is tough and difficult to make the change from a patient who is cared for palliatively to the next ‘healthier’ patient. The category is represented in three subcategories: Close relationship, Young patients, and Time-consuming work.

Close relationship

The district nurses feel that in homes they form a strong relationship with the patient and relatives because contact with them is closer. They often know each other for a long time, which means that district nurses feel that they are almost part of the family. Some district nurses point out that they can be personally affected when a patient passes away, as it becomes personal grief.

In the home you talk about everything and you get to know each other. You almost become like a family member. (P7)

Young patients

District nurses feel that they are more personally affected when they care for young patients in their homes. When district nurses care for people who are in the middle of life, they highlight that it can be hard because they can identify with and familiarize themselves with the situation. Taking care of children is especially difficult, since district nurses do not see any justice in the fact that a child should become sick and die. Because the family also suffers extremely in these cases, it becomes extra emotional. Many district nurses describe that they feel that they become more engaged emotionally the older they become. Some highlight that it may be because the older they become themselves, the younger the patients seem in comparison.

We care for palliative patients of all ages, but the younger they are the more difficult it feels. (P2)

Some district nurses highlight that when the work of providing palliative care in the home becomes emotionally demanding, they experience a need for guidance and debriefing. District nurses illuminate the importance of having the opportunity to do so, but they do not perceive that this possibility exists. District nurses agree that it is important to talk to someone in order to not go home full of emotions.

Time-consuming work

District nurses feel that it is time consuming to provide palliative care at home because it involves a lot of time spent around these patients and their relatives, and this affects them personally. District nurses describe how they find that time is a challenge because they have other tasks that should also be dealt with, which can lead to stress and frustration. They therefore feel that they cannot always give the patient the time they would like to. District nurses, however, highlight that the patients who are cared for palliatively in their homes are given priority, and that the other work must wait.

It's always difficult for you, because you have to do the other things to. We don't get time set aside if we have a palliative patient. (P9)

District nurses also illustrate how patients who are cared for palliatively are always in their thoughts. They think about how they and their relatives must feel, whether they have done things correctly, and how they can do more for their patients. District nurses think that there should be a maximum number of patients per nurse to be cared for palliatively at home, because of the time-consuming nature of the work. Some wish that the possibility of being disconnected from other tasks existed when there is a lot to do with these patients. Although district nurses feel that, at times, it can be difficult to cope with the other tasks together with palliative care, they highlight that it feels good to have other patients as well. They question whether they would be able to work only with patients who are cared for palliatively, because of the personal impact. District nurses, however, highlight that they want more resources. They suggest that those who work in palliative care at home should only do that and not have so many other duties, because of the time-consuming nature of the work. As a proposal, a palliative home care team emerges, which only works with these patients. According to district nurses, it would be better for patients because it would lead to more time for them.

You should have better resources, so those who work in palliative care would really only work in that. One could have a palliative home care team … The question is if you can manage to work only in palliative care. But for the patient's sake I think it would probably be good because it would give more time for the patient. (P5)

Knowledge demanding

The category represents how district nurses feel that palliative care in the home is demanding on knowledge. District nurses describe that the work involves varied tasks, and knowledge is needed about different things, including symptom management, technical equipment, and being able to converse with patients and relatives. Furthermore, district nurses highlight how they coordinate care around the patients who are cared for palliatively in their homes. The participants feel that they are alone in their jobs, and that it is not always easy to provide palliative care in the home. They find that palliative care at home is affected by their own knowledge and interest in palliative care. They, therefore, illustrate that care can vary from district to district. District nurses feel that competence needs to be raised generally in providing palliative care in the home. They highlight that more education and training of staff is needed, because good palliative care at home is based on both knowledge and experience.

The category is presented in four subcategories: Communication, Main responsibility for coordination, Symptom management, and Technical development.

Communication

District nurses feel that knowledge about communication is needed, and they must be able to communicate with others because communication is important in palliative care in the home. Many district nurses feel that communication with the patient and relatives at home is good, which creates a sense of security. They find that patients open up more and talk in a different way when they are cared for at home, because they feel safer in their homes. District nurses also highlight that they must be able to communicate with relatives, as they have an important part in palliative care in the home. Many relatives become worried when the patient gets worse, and so it is important to communicate with them and inform them about what is happening.

Communication is important … to create sense of security in the home. Both with patients and relatives. (P8)

District nurses also illuminate that in families where the patient and relatives have not accepted or understood that the patient is at a palliative stage of care, communication can be difficult. District nurses, however, highlight that they do not refrain from having these difficult conversations as they feel that they have enough knowledge and experience of them. They describe, however, that they can understand if others with less experience may think that these conversations are difficult to implement. Some of the district nurses also illuminate that they sometimes experience communication difficulties when they care for patients from other cultures. When different languages are spoken, and an interpreter must be used to be able to communicate, district nurses feel that it is not as good as if they had been able to talk to the patients themselves. They highlight the importance of really getting across what they mean.

Furthermore, district nurses feel that communication with relatives after the death is important. District nurses always have survivor talks with relatives after the patient has died in the home. When the relationship has been close, and contact has usually been long-lasting, they highlight the importance of not forgetting communication with relatives when the patient has passed away.

Surviving talks are an important part. You can't release relatives when you have been in such a close relationship. You have to think of them afterwards when the patient has passed away. (P12)

Main responsibility for coordination

District nurses feel that they have the main responsibility for the coordination of those patients who are cared for palliatively in their homes. According to district nurses, responsibility is often great around these patients who are cared for palliatively in their homes, which requires knowledge about different things. In addition to nursing, symptom management, and the conversations with the patient and relatives, consultation with a doctor may be required, or planning for home visits with a doctor or making calls regarding aids or similar.

You can say that you are the spider in the net when you are a nurse for palliative patients in their homes. (P10)

Symptom management

The participants highlight that knowledge of symptom management is important, and symptom management is a big part of providing palliative care in the home. It appears that symptom management works well, and district nurses highlight that symptom management at home has improved, and since they received general delegation on drugs, they can provide patients with palliative diagnosis. They also highlight that new and better medicines have been developed in recent years. In cases where symptoms cannot be completely alleviated, the district nurses highlight the importance of staying with the patient and relatives to provide a sense of security and telling them what can be done. District nurses also feel that the security of the home environment and the availability of district nurses can reduce the need for pain relief and anxiety-reducing medication when the patient comes home from the hospital.

I think symptom management works well in the home. We have a list with exactly what you give for pain, anxiety, and so on, and how to combine them. And they usually cope with the drugs. (P4)

Some district nurses illuminate that distances can sometimes be a difficulty when it comes to symptom management. The waiting time for the patient can be long before the district nurse comes and can provide symptom relief. The district nurses, however, describe that ready-made syringes can be prepared and left in the home for injection, which relatives or the patients themselves can administer first, before the district nurse arrives.

Technical development

District nurses feel that palliative care in the home has become very technical, and it requires related knowledge. There are shared views around access to technology in the home. In many cases, technique is perceived as a good thing that is needed at home. District nurses, however, describe that sometimes technique takes over in certain contexts since it takes more time than the actual care of the patient. It can also be perceived as a concern for the patient and relatives when technology fails. The district nurses highlight that technology should never be more important than the patient.

Many times it may be that technology takes over … (P11)

Discussion

Overall, the study's results show that collaboration with both the patient and his/her relatives is required for good palliative care in the home. The results show that district nurses feel that, in the home, a lot of focus is on the family, and that relatives have an important role as they often care for the patient. The study also highlights the importance of having good collaboration, with functioning communication, both with the patient and his/her relatives. District nurses highlight the importance of meeting both the patient's and his/her relatives’ wishes in order to be able to create a sense of security in the home for both parties. Previous studies confirm the importance of supporting both the patient and relatives who care for the patient,^{5,17,24,29,30} and of recognizing that serious illness affects the whole family. Palliative care in the home is therefore considered to be most effective when it is family-centered.^1,24 This means that care must be adapted to each person and family. While relatives care for the patient, they themselves also need ‘care’. Studies highlight the importance of meeting family members’ need for support and information on the development of events,¹ and how the relationship between the district nurse, the patient, and the relatives is the foundation of good palliative care. This relationship helps district nurses to identify and meet the family's needs.³⁰ Communication between the parties should be open and honest,¹ and it is also important that district nurses use language that the family understands.³¹ Communication between the district nurse and the patient is required to achieve a holistic view of the patient as a person.³² Through communication, the person behind the sick patient is seen, which leads to good care. This is confirmed in the model for person-centered palliative care, the 6 S model, which highlights that the patient's description of his/her own situation and what is important to him/her is the given starting point for palliative care. This model illuminates the importance of seeing the patient as a person and promoting the patient's opportunity to participate in his/her care and to experience as good a life as possible at the end of life.⁸ If excellent collaboration with strong communication prevails, the patient can usually remain at home and receive palliative care there, which can have a positive effect on both the patient and their relatives.⁵ Palliative care should focus on achieving and maintaining an optimal quality of life for both the patient and relatives.¹⁵ According to the World Health Organization's definition of palliative care,⁷ it is assumed that the care focuses on the needs of both the patient and the relatives, and communication, relationships, and support for relatives constitute two of the four cornerstones that good palliative care in the final stages of life assumes.

An interesting finding that emerges in the results is that district nurses do not experience difficulties regarding symptom management in the home. This contradicts the findings of previous studies,^1,33,34 which have shown that district nurses experience difficulties in managing patients' symptoms in their homes, and that this ability depends partly on their own knowledge, but is also affected by, for example, medical cooperation and access to special palliative teams.¹ The district nurses who participated in this study generally had substantial experience and good knowledge of providing palliative care in the home. They also had general prescriptions for drugs to give to these patients and illuminated that new and better drugs have appeared in recent years. They also had access to a palliative team. These factors are a possible explanation for their positive experiences of symptom management in homes. Had district nurses with less work experience been interviewed, other experiences about symptom management might have emerged. Symptom management is an important part of palliative care, and it is one of the cornerstones that good palliative care in the final stages of life assumes.^3,4 It is also one of the S's in the 6 S model for person-centered palliative care.⁸

The study shows that district nurses are personally affected by providing palliative care in the home. The district nurses describe how their work is associated with both rewarding, demanding and stressful feelings. These two aspects, and the fact that the work is both emotionally rewarding and demanding, are confirmed in previous studies.^1,11,18 The result of this study shows that when district nurses feel that they are personally affected by their work of providing palliative care in the home, which is emotionally demanding, emotional support is required in the form of guidance or debriefing with colleagues. However, they highlight that the opportunity for this does not always exist. Earlier studies confirm that many district nurses find that emotional involvement is sometimes difficult to handle.^1,11,21 The personal emotional impact on district nurses who work with providing palliative care in the home can therefore not be ignored as many experiences have an emotional character. Greater consideration must be given to developing formal channels of support for district nurses who work in palliative care in the home if they are to be able to continue to carry out the work.¹¹

The study shows that district nurses feel that it is time consuming to provide palliative care at home, and that it also can affect them personally. They experience frustration and stress when they do not have enough time. The results show that many of the district nurses feel that they do not have the time they want for those patients who are cared for palliatively in their homes. Time is perceived as a challenge, as other tasks must also be included. Research confirms that district nurses feel that it is time consuming to provide palliative care in the home. District nurses also illuminate the importance of giving these patients time. Furthermore, district nurses feel that it is emotional needs that are not met when there is a lack of time. The focus is primarily on meeting physical needs.³⁵ In the 6 S model for person-centered palliative care, the importance of meeting both the physical, mental, social, spiritual, and existential needs based on a holistic view of man is highlighted for good palliative care to be given.⁸ Good palliative care means considering both physical, mental, social, and existential needs. Palliative care must be characterized by a holistic view of the individual so that he/she can live with dignity and with the greatest possible well-being at the end of life.⁴ This means that, unless all needs are met, the quality of palliative care is lacking. Studies show that the district nurses feel that the lack of time can affect the quality of care,²⁰ and that the quality of care that is offered to all patients in home healthcare is questioned, by both patients who are cared for palliatively and nonpalliative patients.¹¹ This is because palliative care can be both unpredictable and time consuming. Others illuminate that the district nurses in their study sometimes feel that they spend less time with, and effort on, the nonpalliative patients because the patients who are cared for palliatively require so much time.¹¹ This means that the question arises as to whether nonpalliative patients' care deteriorates at the expense of palliative care. District nurses in this study suggest organizational changes for the provision of palliative care in the home. As a proposal, it appears that a palliative home care team, who only work with patients who are cared for palliatively, is desirable. Similar findings are found in other studies where district nurses also experience a stressful work schedule with limited resources when palliative care is integrated with other home care work,¹¹ and it is argued that other organizational models, such as a palliative home care team, can support district nurses who work in palliative care at home.³⁶ However, they highlight the challenges of such an organizational change, as many district nurses point out that they value the variation in work, which is also the case in this study.

In qualitative studies, it is important to confirm the quality and reliability throughout the research process. The researcher can only earn the reader's confidence if the study contains as much information as possible about which choices have been made.²⁶ To be able to assess the study's reliability and transferability, the researchers have tried to give a clear description of the entire research process.²⁷ Since the assessment of credibility is largely dependent on the method used, the researchers have had to clearly describe and justify the choices made.³⁷ In the results, quotations have been used to support the conclusions that have been made, but also to enable assessment of the reasonableness of interpretations made. To get an answer to the study's purpose, a qualitative method was chosen as it is appropriate when a phenomenon wants to be investigated .²⁶ Semi-structured interviews were used as a data collection method because interviews are considered the best method to use to understand phenomena, by offering participants the opportunity to talk about their experiences in their own words.

A strategic selection was chosen for the study in order for the participants to be representative of what we wanted to study.²⁶ The inclusion criteria were district nurses with a specialist nursing education, who had worked in home nursing for at least two years with experience in palliative care. The inclusion criteria were chosen to increase the possibility that the participants had experience of what they wanted to study and to give the selection a common denominator that made it possible to answer the purpose of the study.³⁸ Twelve district nurses who fulfilled the study's criteria participated in the study as it was considered a reasonable number to achieve the purpose and obtain satisfactory depth and variation in data within the time frame of the study.³⁹ When the 12 interviews were completed, a saturation was experienced, as similar experiences eventually emerged.⁴⁰ Similar information emerged in the 12 interviews, which strengthens the credibility of the results.²⁶ To recruit participants for the study, managers were used as ‘door openers’ because they possessed knowledge of which district nurses fulfilled the study criteria.^26,38 This may have affected the selection because the managers may have asked people who they considered to be best suited to the study.³⁸ Participants’ voluntary participation in the study can also be affected when asked by managers. Of the district nurses who participated in the interviews, the majority were over 50 years old. They had worked in home care for an average of 21 years, which meant that the participants had many years in the profession. Two-thirds of the district nurses also had training in palliative care. The fact that the district nurses had both education and substantial experience in the profession may have affected the results, because they possessed special knowledge as a result of it. Of the 12 district nurses interviewed, three were men, and nine were women. This gender distribution may also have affected the results. However, this represents reality — an over-representation of women in the healthcare sector. The participants in the study were recruited from two municipalities in southern Sweden, where the organization has recently undergone a major change since they moved from county council to municipal government. All the district nurses who participated in the study worked in different districts in the municipalities but belonged to the same organization. It may have affected the result because the geographical spread was not so great, and local culture may have been represented. The National Board of Health and Welfare² believes that palliative home care in Sweden is geographically uneven. A larger geographical spread could have affected the outcome differently.

During the interviews, a question guide with open questions was used. To avoid being restricted by the question guide, the participants were encouraged to talk freely about the topics and to tell their experiences in their own words. In many cases, the introductory question invited a narrative with the following questions flowing naturally, which is considered to be a strength of the study.³⁹ Many of the experiences, especially the positive ones, emerged during the opening question. The method meant that all participants did not always receive the same follow-up questions, as they could vary somewhat depending on what they were talking about. However, it was not considered to be a disadvantage.⁴¹ The technology ensured that the interviewer received the information requested, while the participants were given the freedom to respond with their own words and give as much detail or explanation as they wanted.²⁶

Since the researchers themselves had no experience of having worked as district nurses providing palliative care in the home, they could be open and naive in the interviews. Since it is considered of great importance that the researcher should not lead the participants or share personal opinions with them during interviews, the researcher always tried to be neutral, both in expression and body language, and adapt to the situation. This was so that the interview would not lose its credibility.²⁶ Despite making an effort not to ask leading questions, the researcher sometimes found that this was difficult to avoid. Leading questions may, on occasion, have been posed due to a lack of interview technique, since the researcher was, above all, in his role as an interviewer. In that case, this can be seen as a weakness of the study.³⁹ It may have led to the participant broaching certain areas that emerged as the questions were asked. However, the participants illuminated similar subjects, which indicates that the result was not significantly affected.

According to Polit and Beck,²⁶ the difficulty of interviewing is that the quality of the interview is partly dependent on the interviewer's knowledge and approach. The fact that the researcher was, above all, in his role as an interviewer may have influenced the researcher's interviewing technique, and thus also the ability to gain the confidence of the participants. In that case, it may have affected the openness and depth of the interviews and been a limitation of the method. The researchers, however, felt that the structure of the follow-up questions meant that more detailed information was received from the interviews if the answers to the open questions became concise. The transcription of the material was carried out by the same person who conducted the interviews. This means that the risk of misinterpretation of the material decreased, which can strengthen the study's credibility.²⁶ The transcribed material was analyzed according to the qualitative content analysis described by Graneheim and Lundman.²⁷ The content analysis was intended to be carried out with a low degree of interpretation because manifest content analysis was chosen to be used. The assessment is made that this was done because the researcher attempted to describe only the visible material of the text material and used concepts that the participants themselves had used. Graneheim and Lundman²⁷ argue that there is always some degree of interpretation when qualitative content analysis of a text takes place, and interpretation always occurs because some preunderstanding of the subject exists.⁴²

The study shows that district nurses are personally affected by providing palliative care in the home. They describe how their work is associated with both rewarding, demanding and stressful feelings. Moreover, the work is perceived as both time consuming and knowledge intensive. The nurses feel that the patient's emotional needs are not met when there is a lack of time. They describe the importance of meeting both the physical and psychological needs based on a holistic view, for good palliative care to be given (as described in the 6 S model for person-centered palliative care). The district nurses want more resources and more collaboration with the palliative home care team. Access to a doctor in the palliative home care system is requested, as well as continuous training in palliative care. These findings are considered to be of importance to the organization in which the district nurses work, as they are crucial for the district nurses to be able to continue to carry on the important work they do.

Footnotes

Ethical consideration

We applied for and received ethical guidance from the ethical advisory board in south-east Sweden and this study did not require ethical approval under the Swedish Ethical Review Act (2003:460). The study complies with the Declaration of Helsinki, prescribing research involving humans fulfils the prerequisite of being valuable to mankind. The Declaration also prescribes the use of informed consent, including the possibility to discontinue participation at any time.

Acknowledgements

The authors wish to thank the participating district nurses and the municipalities in the county of Blekinge. The authors also wish to thank Blekinge Institute of Technology for supporting this study.

Funding

This study was supported by the Blekinge Institute of Technology

Declaration of conflicting interests

The authors declare that there is no conflict of interest.

References

Dunne

Sullivan

Kernohan

. Palliative care for patients with cancer: district nurses' experiences. J Adv Nurs 2005; 50(4): 372–380.

The National Board of Health and Welfare Socialstyrelsen. Care in the final stages of life: The National Board of Health and Welfare's assessment of developments in county councils and municipalities. Stockholm: The National Board of Health and Welfare Socialstyrelsen, 2006. Report No.: 2006-103–8.

Government Offices. SOU 2001:6. Death concerns us all: Worthy care in the end of life. Stockholm: Regeringskansliet, 2001. Report No. SOU 2001:6.

The National Board of Health and Welfare. National knowledge support for good palliative care in the end of life: Guidance, recommendations and indicators. Support for steering and management. Stockholm: The National Board of Health and Welfare, 2013. Report No.: 2013-6–4.

Jack

Baldry

Groves

, et al. Supporting home care for the dying: an evaluation of healthcare professionals' perspectives of an individually tailored hospice at home service. J Clin Nurs 2013; 22(19–20): 2778–2786.

Gomes

Higginson

. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ 2006; 332(7540): 515–521.

World Health Organization. World Health Organization definition of palliative care, http://www.who.int/cancer/palliative/definition/en (2002, accessed 1 March 2019).

Ternestedt B-M, Österlind J, Henoch I, et al. The 6 S: a model for person-centered palliative care. Lund: Studentlitteratur, 2017.

World Health Organization. Palliative care for older people: better practices, https://apps.who.int/iris/bitstream/handle/10665/107290/e95052.pdf (2011, accessed 1 March 2019).

10.

Thomé

Dykes

A-K

Hallberg

. Home care with regard to definition, care recipients, content and outcome: systematic literature review. J Clin Nurs 2003; 12(6): 860–872.

11.

Burt

Shipman

Addington-Hall

, et al. Nursing the dying within a generalist caseload: a focus group study of district nurses. Int J Nurs Stud 2008; 45(10): 1470–1478.

12.

Law

. ‘Bridging worlds’: meeting the emotional needs of dying patients. J Adv Nurs 2009; 65(12): 2630–2641.

13.

Offen

. The role of UK district nurses in providing care for adult patients with a terminal diagnosis: a meta-ethnography. Int J Palliat Nurs 2015; 21(3): 134–141.

14.

Bainbridge

Bryant

Seow

. Capturing the palliative home care experience from bereaved caregivers through qualitative survey data: toward informing quality improvement. J Pain Symptom Manage 2017; 53(2): 188–197.

15.

Munck

Fridlund

Mårtensson

. District nurses' conceptions of medical technology in palliative homecare. J Nurs Manag 2011; 19(7): 845–854.

16.

Sekse

RJT

Hunskår

Ellingsen

. The nurse's role in palliative care: a qualitative meta-synthesis. J Clin Nurs 2018; 27(1–2): e21–e38.

17.

Wilson

Griffiths

Ewing

Connolly

Grande

. A qualitative exploration of district nurses' care of patients with advanced cancer: the challenges of supporting families within the home. Cancer Nurs 2014; 37(4): 310–315.

18.

Walshe

Luker

. District nurses' role in palliative care provision: a realist review. Int J Nurs Stud 2010; 47(9): 1167–1183.

19.

Davies

Jenkins

Mabbett

. Emotional intelligence: district nurses' lived experiences. Br J Community Nurs 2010; 15(3): 141–146.

20.

Stuart

Jarvis

Daniel

. A ward without walls? District nurses' perceptions of their workload management priorities and job satisfaction. J Clin Nurs 2008; 17(22): 3012–3020.

21.

Berterö

. District nurses' perceptions of palliative care in the home. Am J Hosp Palliat Med 2002; 19(6): 387–391.

22.

Wilson

Griffiths

Ewing

, et al. A qualitative exploration of district nurses' care of patients with advanced cancer: the challenges of supporting families within the home. Cancer Nurs 2014; 37(4): 310–315.

23.

Öhman

Söderberg

. District nursing: sharing an understanding by being present. Experiences of encounters with people with serious chronic illness and their close relatives in their homes. J Clin Nurs 2004; 13(7): 858–866.

24.

Pusa

Hägglund

Nilsson

, et al. District nurses' lived experiences of meeting significant others in advanced home care. Scand J Caring Sci 2015; 29(1): 93–100.

25.

The National Board of Health and Welfare. Home care in change: a survey of home health care in Sweden and proposals for indicators. Stockholm: The National Board of Health and Welfare, 2008. Report No.: 2008-126–59.

26.

Polit D and Beck C. Nursing research: generating and assessing evidence for nursing practice. 10th ed. International ed. Philadelphia, Baltimore, New York, London, Buenos Aires, Hong Kong, Sydney, Tokyo: Wolters Kluwer, 2017.

27.

Graneheim U and Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurs Educ Today 2004; 24(2): 105–112.

28.

World Medical Association. Declaration of Helsinki. Ethical principles for medical research involving human subjects, http://philpapers.org/rec/ASSDOH (2009, accessed 2 January 2016).

29.

Kennedy

. District nursing support for patients with cancer requiring palliative care. Br J Community Nurs 2005; 10(12): 566–574.

30.

Wright

. Caring for the terminally ill: the district nurse's perspective. Br J Nurs 2002; 11(18): 1180–1185.

31.

Graham

Robson

Whitford

. Collusion in palliative care: a reflective account. J Community Nurs 2005; 19(6): 4–8.

32.

Strandberg

Ovhed

Borgquist

, et al. The perceived meaning of a (w)holistic view among general practitioners and district nurses in Swedish primary care: a qualitative study. BMC Fam Pract 2007; 8(1): 8.

33.

Shipman

Burt

Ream

, et al. Improving district nurses' confidence and knowledge in the principles and practice of palliative care. J Adv Nurs 2008; 63(5): 494–505.

34.

Marchessault

Legault

Martinez

A-M

. Providing in-home palliative care within a generalist caseload: a chance for nurses to reflect on life and death. Int J Palliat Nurs 2012; 18(3): 135–141.

35.

Austin

Luker

Caress

, et al. Palliative care: community nurses' perceptions of quality. BMJ Qual Saf 2000; 9(3): 151–158.

36.

Rose

Glass

. Nurses and palliation in the community: the current discourse. Int J Palliat Nurs 2006; 12(12): 588–594.

37.

Olsson

Sörensen

. The research process, Stockholm: Liber, 2007.

38.

Holloway I and Galvin K. Qualitative research in nursing and healthcare. Ames, Iowa: John Wiley & Sons, 2016.

39.

Kvale S and Brinkmann S. Interviews: learning the craft of qualitative research interviewing. Thousand Oaks, CA: SAGE, 2009.

40.

Gillham B and Gromark EJ. The research interview: technicians and implementation. Lund: Studentlitteratur, 2008.

41.

Hsieh

H-F

Shannon

. Three approaches to qualitative content analysis. Qual Health Res 2005; 15(9): 1277–1288.

42.

Gadamer H-G. Truth and method. 2nd, rev. ed. London: Sheed and Ward, 1989.