The nurse′s challenge of caring for patients with chronic obstructive pulmonary disease in primary health care

Abstract Aim The aim was to describe asthma and chronic obstructive pulmonary disease nurses′ experiences of caring for patients with chronic obstructive pulmonary disease in primary health care. Design Descriptive qualitative research. Methods Ten asthma and chronic obstructive pulmonary disease specialized nurses were interviewed. Systematic Text Condensation by Malterud was used to analyse the data. Results Two main categories were found: the patient‐nurse relationship and available resources. Several challenges emerged when connecting with patients and the nurses found it difficult to individualize care. They struggled with a lack of time and support from other professionals. Being responsible for asthma and chronic obstructive pulmonary disease practice was experienced as positive, but could become overwhelming. The asthma and chronic obstructive pulmonary disease nurses described several challenges and the need for support and resources to provide the best possible care for patients with chronic obstructive pulmonary disease.


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GUSTAFSSON ANd NORdEMAN prevention strategies. The national guidelines in Sweden emphasize the importance of collaboration between professionals in the care of patients with COPD, such as specialized nurses, physicians, physiotherapists, dieticians and psychologists (The National Board of Health and Welfare 2015). Nurse-led asthma and COPD practices in primary healthcare centres (PHCC) can offer organized care and provide education and support to help patients improve their ability to manage the disease and its effects on their lives. Studies show that PHCCs with asthma and COPD nurse practice (ACNP), experience fewer COPD exacerbations and hospitalizations (Lisspers et al., 2014;Löfdahl et al., 2010). In western Sweden, a regional guideline has been developed from the national guidelines, which contain brief facts and descriptions of treatment (The region Västra Götaland 2013). The focus is on diagnostics and management of patients with COPD at PHCCs.
Reports show a need to structure the care of patients with COPD in primary health care (The National Board of Health and Welfare 2014). A survey performed in western Sweden indicated that 80% of the involved PHCCs had an ACNP (Thorn et al., 2008). An approved ACNP, includes a nurse specialized in asthma and COPD, booked visits, telephone counselling, structured investigations, patient education, support for smoking cessation and follow-up visits (Kull et al., 2008). The asthma and COPD specialized nurses′ (ACN) experience of patient education can fluctuate between insecurity and security, as presented in a qualitative study by Zakrisson and Hägglund (2010).
The nurses wished for more structured patient education, time, collaboration and support from other professions, to enable individualization of care. Structured ACNPs have been shown to be cost-effective in primary health care (Lindberg, Ahlner, Ekström, Jonsson, & Möller, 2002). Reports indicate that the care of these patients is generally adequate, however, there are several areas that need to be improved (The national Board of Health and Welfare 2014). Despite the knowledge that a structured management can contribute to evidence based, good and safe care of patients with COPD, reports show deficiencies in applying the knowledge, leading to unequal care (Lindberg et al., 2002; The National Board of Health and Welfare 2015).

| AIM
The aim of this study was to describe ACNs′ experiences of caring for patients with COPD in primary health care.

| Study design
Qualitative interviews were chosen to describe the ACNs′ experience of caring for patients with COPD. All 201 PHCCs in the western region of Sweden were randomly selected and a total of 70 interestin-participation requests were sent to managers at each PHCC by email or letter. Half the managers responded and provided the ACNs′ contact information. Eight nurses declined participation and ten ACNs were included. Details concerning participants are provided in Table 1. All participants provided their written informed consent.
None had an established relationship with the authors.

| Data collection
Data were collected from December 2015-June 2016. The first author interviewed the ACNs at their PHCC. The taped semistructured interviews lasted between 30-50 minutes. Informants were asked to describe their experiences of caring for patients with COPD. In-depth questions such as: "Can you tell me more about…?" and "What do you mean?" were asked. After the interviews, the first author transcribed the recordings verbatim.

| Data analysis
Data were analysed through Systematic Text Condensation (STC) as described by Malterud (2012). The method is a stepwise process suitable for analysis of qualitative data and includes four steps. First, all interviews were read to obtain an overall impression of the material. Preliminary themes were formed. The first step is described as "from chaos to theme". In the next step "from themes to codes", units of meaning were identified and systematized, representing different aspects of the ACNs′ experiences. The third step was to condensate the units of meaning, "from code to meaning". In the last step, the condensates were summarized by generalizing descriptions and concepts, "synthesizing -from condensation to descriptions and concepts".

| Ethical considerations
The Regional Ethical Review Board in Gothenburg approved the study. All participants received written and oral information before entering the study.

| FINDING S
Two main categories regarding the ACNs′ experiences of caring for patients with COPD were generated from the data, the patient-nurse relationship and available resources. The first category describes the challenges of connecting with the patient and how care was affected when connection failed. The nurses also experienced challenges individualizing care and structuring visits according to patient needs. The second category describes available resources for the nurses at the ACNP and the importance of time, support and cooperation in keeping responsibility from becoming overwhelming. An overview of the findings presented as categories and subcategories are listed in Figure 1.

| The challenge of connecting with patients
The ACNs in the study found it exciting and challenging to meet patients with COPD. They felt a challenge in approaching patients because of the need for them to adapt to different perceptions of the illness and its treatment. They also felt the need to adapt to the complexity of the disease.

| Failing to connect with the patient
Several participants experienced a sense of hopelessness and frustration when failing to connect with the patient. One of the nurses described this as the most challenging part of meeting the patient.
Failing to connect would result in the visit losing its meaning: "Some (patients) just come here and do as they are told.

| The challenge of individualizing care
In our material, several participants shared the view that it was both stimulating and personally developing to work independently with patients on the ACNP. Patient visits involved activities such as spirometry, symptom evaluation, smoking cessation support, inhalation technique and advice on physical activity and nutrition.
Visits had more or less the same structure but the nurses tried to adapt meetings based on patient needs and disease severity.
Visits were also affected by how well nurses knew the patients.

| The overwhelming responsibility
The nurses in the study described having considerable responsibility for the ACNP, which felt mostly positive. Some told of how they were responsible for coordinating care based on the patients' needs.
They contacted physicians, rehab clinics and others when needed.
They felt that this role facilitated for both the patient and PHCC.
However, this responsibility could feel overwhelming, especially regarding patients with the most severe COPD. In these cases, the support of pulmonary specialists was important. Some of the nurses experienced successful cooperation with pulmonary care clinics:

| Patient-nurse relationship
The ACNs in the study described the challenges when caring for patients with COPD due to the complexity of the disease and differences in how patients experienced its effects on their lives.
Connecting with patients can be difficult, leading to frustration.
Studies show that patients want improved care and there is a lack of self-management support and understanding of their condition (Wortz et al., 2012). Patients felt confused, frustrated and wanted to learn more about their illness. They also experienced a lack of information about the disease and medication. Ekman et al. (2011) imply that person-centred care improves health outcomes and patient satisfaction through interaction between patients, families and healthcare professionals. Seeing the patient as a partner, listening to their perception of their condition and experiences and documenting the patient narrative and health plan are keys to person-centred care.
Participants in our study had diverse backgrounds and experiences of this group of patients, which is yet another factor having an impact on care. Some nurses focused more on practical aspects, for example spirometry and tried to check off several mandatory measures during the visit, while others tried to focus and adjust the visit to individual needs. A previous study by Lundh, Rosenhall, and Törnkvist (2006)  to focus on patient histories. They gave information to the patients about self-management and smoking cessation, but the use of motivational dialogue was limited. Care was rarely summarized in a written treatment plan.

| Available recourses
In our study, participants described the resources at their disposal in the care of patients with COPD. Several wished that they had had more time to provide as good care as possible. Some of the nurses described feeling forced to follow "a manuscript" during visits to allow time to gather required information. By focusing mainly on pa-tients′ breathing some participants felt they could provide adequate structure to the visits. The lack of time also prevented them from seeing the patients as often as they considered necessary and made it difficult to follow guidelines to the desired extent. An important factor in providing good quality management in the care of patients with asthma and COPD is the amount of time reserved for ACNP (Carlfjord & Lindberg, 2008).
It was mainly through education supported by the pharmaceutical industry that participants could partake of new research and guidelines. Some described having no designated time to partake in research or involve themselves in current subjects and studies. Their Cooperation with other professionals differed between ACNs in the study. Only a few participants worked in inter-professional teams. Most considered it especially important to collaborate with physicians and physiotherapists, but several witnessed a lack of cooperation, particularly the nurses working alone as an ACN at the unit and missed discussing problems with colleagues. Thorn et al. (2008) demonstrates, in a study in Sweden 2008, that larger PHCCs had better opportunities to design the care of this group of patients based on guidelines and recommendations. Several participants in our study expressed how they wished physicians had better knowledge of the care of patients with COPD and felt a lack of support, especially for patients with the most severe form of COPD. The nurses described enjoying responsibility, but only to a certain degree. They believed the physicians trusted the ACNs′ competence, occasionally more than the nurses wished for, according to some. The division of responsibility was somewhat unclear, as described by some nurses and they expressed how they would have preferred that physicians would take more medical responsibility. Harris, Hayter, and Allender (2008) describes in a study the factors affecting nurses′ and physicians′ cooperation. Similar to our study, the nurses experienced a lack of teamwork and wished for more involvement by physicians in the care of patients with COPD. They also felt they had to act as "substitute doctors" and held too much medical responsibility for the patient instead of focusing on nursing. The physicians, on the other hand, described how they were only involved in acute conditions; the remaining care was delegated to specialized nurses, which made them feel less skilled. Some considered the nurses more competent, having greater knowledge of this group of patients. The nurses also shared this opinion.
The ACNs in our study described caring for patients with advanced COPD as the most difficult part. The responsibility felt overwhelming, due to a lack of support from physicians and pulmonary specialists.
They also felt shortcomings in their skills and competence. In Zakrisson and Hägglund (2010) study participants described the importance of support. The nurses with support from colleagues and management felt more secure regarding patient education. When support was inadequate, it resulted in insecurity and had negative effects on care of patients with COPD. Another qualitative study (Kentischer, Kleinknecht-Dolf, Spirig, Frei, & Huber, 2017)  Several of the ACNs wished for better cooperation with rehab clinics, considering the importance of physical activity in patients with COPD at all stages. The nurses in our study described how they usually discussed the importance of physical activity during visits, giving patients advice and support in this matter. Sometimes patients were recommended contacting a rehabilitation clinic. The eventual visits were not often followed up. National guidelines in Sweden (The National Board of Health and Welfare 2015) emphasize the importance of assessing physical capacity and offering patients with COPD support regarding physical activity.
When assessing physical activity, the use of the six-minute walk test is recommended and should be offered to patients in a stable phase and also to identify patients with an increased risk of mortality and hospital admission (ibid.). Much is involved in visits, which jeopardizes the time nurses had to thoroughly discuss physical activity and measures to decrease breathlessness and other symptoms. Cooperation with physiotherapists as experts in this area should allow ACNs more time to focus on the patients′ other important needs and wishes.

| Strengths and weaknesses of the study
Qualitative methods are suitable to the study of human experiences.
A strength of our study was that the interviews provided a deeper understanding about the nurses′ lived experiences of caring for patients with COPD and the factors effecting care. The first author had previous experience of in-depth interview. The informants had a range of work experiences and worked in different sized PHCCs located in different areas, which gave variability to the findings. Ten ACNs participated, which was the original plan and was considered a sufficient amount according to current conditions. Fewer participants would have resulted in too little data.
A weakness of the study was the loss of participants due to stressful working conditions and perhaps in some cases, insecurity about their competence. The loss of participants less confident in their roles as asthma and COPD specialized nurses may have had effects on the study, with the result that the findings cannot be generalized.
However, it is possible that the findings can be transferred and provide increased understanding of similarly complex nursing situations.
The first author is an experienced ACN and that could affect the interviews according to her preconceptions. Being aware of the phenomenon and asking the participant to develop thoughts regarding feelings and reflections about the subject could lead to the avoidance of negative effects due to preconceptions. Over time, the first author became more secure and aware of her preconceptions and adjusted her technique.
The data was analyzed by Systematic text condensation and was considered suitable for this study. Malterud (2012) describes how the method offers a stepwise process of intersubjectivity, reflexivity and feasibility and maintains methodological quality.

| Implications
When implementing new guidelines and recommendations and when improving existing methods, it is crucial to consider factors effecting care situations. The findings in our study could be used to understand differences regarding management of the care of patients with COPD.
From these nurses' experiences, parallels can be drawn to other nurseled clinics, such as diabetes and cardiovascular. The complexity of caring for patients with COPD needs to be explored from both the patients' and nurses′ point of view, as well as their interaction. To improve and make care more equal, there is a need for greater research in how to decrease the effects of barriers between patients and nurses and how to improve necessary support to nurses.

| CON CLUS ION
Caring for patients with COPD is a challenge to the ACN. There are barriers to overcome for both the nurse and patient. To help and guide the patient towards improved health and management of the disease, the nurse must connect with the patient and develop a good relationship, requiring sufficient resources and support from other professionals to avoid the responsibility from becoming overwhelming.

E TH I C A L A PPROVA L
The Regional Ethical Review Board in Gothenburg approved the study, Dnr: 524-15.

ACK N OWLED G EM ENTS
We thank all interviewees for their participation. Financial support was obtained from the research and development council of Södra Älvsborg, Region Västra Götaland, Sweden. A scholarship was received from Astma-Allergi-och KOLsjuksköterskeföreningen (ASTA).

CO N FLI C T O F I NTE R E S T
The authors report no conflict of interest.

AUTH O R CO NTR I B UTI O N S
TG and LN was responsible for the study conception, design, and drafting of the manuscript. TG performed the data collection and both authors performed data analysis. LN made critical revisions to the paper and supervised the study. Both authors read and approved the final manuscript.