Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies

With an increasing number of patients with chronic conditions worldwide, a growing number of health care professionals (HCPs) will encounter these patients daily. As patients live longer with chronic diseases, the relationship between HCPs and patients may last for years. In order to provide the best treatment for the growing number of patients with chronic conditions, we need to increase our understanding of how to keep HCPs motivated in their work [1]. This is particularly important today, as burn-out among HCPs is a growing problem [2].

The global increase of chronic diseases, often framed as non-communicable diseases (NCDs), has resulted in global strategies within the World Health Organization (WHO) and the United Nations to prevent or delay onset and reduce premature mortality [3]. Lifestyle choices and unhealthy lifestyle habits, such as physical inactivity, an unhealthy diet, and smoking, are commonly linked to NCDs. If these chronic conditions are diagnosed at an early stage and adequate self-management strategies are applied, the prognosis can be good. Self-management of chronic disease entails an active role for patients, who must make day-to-day decisions to manage symptoms, treatment, physical and psychosocial consequences of the disease, and lifestyle changes [4]. Thus, self-management within long-lasting care is often individualized, goal-oriented, and facilitated in collaboration with HCPs [5]. Nevertheless, these patients will often depend on support from the health care system for the rest of their lives, and the likelihood that these patients will leave the health care service once they have entered is low. Patients that need long-term support thus represent a significant and growing strain on the system and on the involved HCPs.

For the past few decades, patients have been encouraged to take responsibility for their health to a greater degree [6]. This is certainly the case for those living with chronic diseases, as patients are now expected to take an active role in their disease management: e.g. to follow medical regimes and comply with recommendations concerning lifestyle changes and adjustments in their daily lives. This requires that patients have easy access to information that is relevant to their specific situation. However, it may also challenge the HCP’s role, as it represents a shift from a paternalistic approach, in which the HCP is the expert, to an approach in which the patient is acknowledged as an expert on his/her own life, with the right to make informed decisions regarding his/her self-management [6]. Here, providing the tailored information and support for each individual patient at the right time, as well as involving and engaging the patients in their care, is important.

The patient’s expertise is highly emphasized in patient-centred care, which is defined as care “that is respectful of and responsive to individual patient preferences, needs, and values” and that ensures “that patient values guide all clinical decisions” [7]. This definition of patient-centred care highlights the importance of clinicians and patients working together to produce the best possible outcomes. Several researchers are proponents of this concept; however, the question has also been raised how HCPs best should handle situations where a patient makes decisions that worsen disease outcomes [8, 9]. Repeated clinical encounters in which expectations regarding the patient role as expert are not met can contribute to this conflict, and possibly increase the already high strain and expectations placed on HCPs. Furthermore, the new HCP and patient roles are not necessarily thoroughly addressed during professional training. Thus, presumably HCPs must continuously balance their professional expertise with regards to responsibility and decision-making: taking responsibility and making decisions for the patient, or letting the responsibility lie with the patient, who may make decisions that include unhealthy behaviors.

Political statements recommend patient-centered care to a growing population of patients, many with NCDs [10, 11]. At the same time, health care are governed by ideals of public management requesting time-limited and effective care. However, the delivery of patient-centered care may take time and as outlined above - even not be effective in improving a patient’s health outcomes. Hence, dilemmas and challenges may arise for the HCPs that cannot be easily solved in clinical practice [12]. Indeed, in studies of nurses and physicians, burn-out and job dissatisfaction is associated with plans to leave their jobs [2].

Previous research on HCPs’ experiences of long-term patient–provider relationships is scarce, and often related to professional practice procedures rather than to the HCPs’ individual working experiences in general. How to understand the patient’s experiences is widely researched, but how the HCPs experience the patient–provider relationship, particularly when patients have a chronic disease, appears not to have generated equal interest among scientists. One qualitative study aiming to elicit providers’ perspectives on caring for patients with chronic pain found that HCPs internalized feelings of failure, guilt and discontent. This study highlighted the need for physicians to care not just for their patients but also to adopt self-care strategies to reduce “compassion fatigue” when caring for challenging patients [13].

The present systematic review of qualitative empirical studies aims to provide an in-depth insight regarding how HCPs experience working with patients with chronic diseases. We decided to focus on chronic obstructive pulmonary disease (COPD), chronic kidney disease (CKD), and type 2 diabetes, as these share commonality regarding the continuity of HCP–patient interactions over time and the great impact of lifestyle and self-management on prognosis. However, the three diseases also have clear differences in their treatment, their need for HCP follow up and prognosis over time, making them suitable to contrast the HCP experience. Thereby, we sought new insights that could aid HCPs, policymakers, and educational institutions in reducing the strain on HCPs and preventing burn-out among HCPs. Thus, our aim was to systematically review the literature on HCPs’ experiences working with patients with long-term chronic diseases such as type 2 diabetes, COPD, and CKD.

The HCPs’ experiences working with patients with type 2 diabetes, CKD, or COPD presented in the papers included in our systematic literature review are captured by three themes: “individualizing the professional approach within the clinical encounter,” “managing one’s emotions over time,” and “working to maintain professionalism.” Together, these themes describe how clinical encounters with patients depend, to a large degree, on the personal interaction between patient and professional, real clinical practice situations and professional ideals, and contextual support and managing one’s own emotions. In more general terms, this means that clinical working experiences are constituted by the interactions between persons, contexts, organizational structures, and health policy claims. Despite the diversity in the efficiency of interventions, treatment options, and long-term prognosis of type 2 diabetes, COPD, and CKD, in general the HCPs’ working experiences seem to be rather shared.

Today, health authorities are governed by ideals such as the patients’ right to receive the best evidenced-based care and the efficiency and cost-effectiveness of the service delivery [41]. At the same time, the democratization of health care services has led to increasing user and patient involvement in all stages of illness, including when the patient is diagnosed with a chronic disease [6, 41]. The patient-centered model of care is part of the user involvement movement and has gained attraction in Western societies. This is meant to counteract the paternalism embedded in the clinicians’ traditional role as sole expert, and to support patients in being active agents regarding the health issues that concern their own lives [6]. However, how patient-centered care should be practiced within the context of the public management and evidence-based practice ideals is rarely, if ever, addressed by research. Our analysis suggests that this balancing act can be complex for HCPs and can create several challenges. This is in line with Holen and Kamp [41], who discuss how user involvement has transformed the relationship between patients and HCPs, and how HCPs today face new dilemmas and challenges. Of particular interest, and in keeping with findings from our study, the authors describe how in long-term patient–provider relationships—e.g. between COPD patients and nurses—“new” professionalism contains relational, emotional and pedagogical aspects to motivate and coach patients. The main aim of this “new” approach is to support the patient in taking responsibility for and self-managing his/her health in a time-efficient way. However, dilemma raises if for example patients need time to understand what a disease implies for their way of living.

As the present findings highlight, on the one hand, the patients’ wishes and autonomy must be respected, as they should be considered experts on their own lives, but on the other, patients do not always understand the severity of their disease-related risks, nor do they necessarily make rational decisions. HCPs feel they lack the tools or ability to help patients and family members understand the risks of not following the prescribed treatment plan. In this way, HCPs feel they are to blame by not fulfilling their professional responsibility. This can be particularly challenging when a patient presents a desire for treatment that differs from evidence-based recommendations for best practice. In such cases, HCPs must balance their acting according to patient-centered care and evidenced-based practice models. “Giving up” one’s professional expertise and instead taking on the role of “partner, colleague or co-worker” may be a solution, as described by Alm Andersen [6]. How precisely to balance such incompatible roles needs broad debate in our society. We argue that this is too heavy burden to be placed on and solved by individual HCPs.

For HCPs, a long-term patient–provider relationship can be both a rewarding and disheartening experience. They may establish a kind of friendship with their patients, and hold significance in their patients’ lives as the one person who shares and can make sense of patients’ disease experiences. As our analysis indicates, this can also be a balancing act, as HCPs know that just as the progression of a disease is uncertain, so is the outcome. HCPs must therefore find the balance between personal closeness to and professional distance from patients, to protect their own emotional vulnerability and maintain a supportive professional role for the patients and their families when patients’ conditions deteriorate, or life ends. There is no formula for how to perform this balancing act in practice, as it is usually individually and situationally determined.

In discussing burn-out among HCPs, Dyrbye et al. [2] point to emotional exhaustion and frequent depersonalization as aspects of burn-out. We found traces of these aspects in our study and agree with the authors that more research to understand and improve the work lives and wellbeing of HCPs is needed. Our findings do indicate, however, that supportive colleagues and leaders, as well as acknowledgement and support from leaders within the health organization, can be helpful. This approach can help meet HCPs’ support needs, and empower them—in various ways and at different levels—to remain in highly complex work situations. We also argue that educational institutions have the responsibility to prepare future HCPs to meet this complexity of clinical practice. As far as we know, this issue is largely absent in today’s curricula.

The contribution and trustworthiness of our meta-synthesis depends on the quality of the original publications on the one hand, and on the rigor of our own methodological process on the other. One strength of this meta-synthesis is that we conducted comprehensive searches of six databases, and thereby generated a variety of data to be analyzed. By choosing three different chronic diseases on which to focus, we succeeded to find richness and variability in HCPs’ detailed working experiences. Furthermore, the inclusion and exclusion criteria and search terms were decided in advance of the literature search, and the searches were conducted by an experienced librarian. Another strength of our meta-synthesis is that the study selection, study appraisals, extractions of data in primary studies to be analyzed and coding were performed independently by pairs of researchers, and the use of NVivo further ensured a rigorous and systematic process. In this part of the process, we followed procedures to ensure reliability in line with a realist perspective [42]. In the analysis, however, we followed an interpretive approach inspired by meta-ethnography and a constructivist stance [42]. This enabled us to take advantage of the various theoretical competencies in the research group. The credibility of the analysis depends on how transparent we present our analysis. We have attempted to describe our data material in the result section as close as possible and with reference to the original papers (second order data). Our overall interpretation of the data (third order level) is presented in the discussion in order to make the correspondence between the descriptions in our result section and our further interpretations transparent. We argue that our shifts between rigorous methodological approach and reflexivity based on our various perspectives and understandings during the whole process have strengthened the trustworthiness of this study. Therefore, it is likely that it is a balancing act to work with diabetes-1, COPM and CKD. Furthermore, we think the complexity and dilemmas raised in these studies are likely to be transferable to the work with other chronic diseases as well.

The present study has some limitations that must be noted. Firstly, according to the quality appraisal, as assessed by the CASP and COREQ, the quality of the original articles can be considered high. However, wider methodological orientations or broader philosophical backgrounds were rarely presented or discussed in the included papers. It is also possible that the assumptions made by the authors of the original studies were continued in the meta-synthesis. Secondly, it is noteworthy that although we welcomed both interview studies and observational studies in the meta-synthesis, no observational studies met our inclusion criteria. This implies a knowledge gap, as the HCP–patient relationship and their interactions require research from different vantage points. Thus, further research to examine how clinical practice is performed and contextualized is needed.

It is clear from this systematic literature review that HCPs’ experience profound stress in their work with patients with COPD, CKD, or type 2 diabetes. On the other hand, they also experience the creation and maintenance of long-term relationships with patients with chronic conditions as personally and professionally rewarding. As such, HCPs must find the balance between personal closeness to and professional distance from patients. They must also balance providing patient-centered care whilst simultaneously developing and strengthening their professional expertise. This underscores the importance, for HCPs, of having systematic support from colleagues, leaders, educational institutions, and health organizations.