Patient Work in Long-Term Conditions

Abstract

Long-term conditions are one of the major causes to morbidity and death worldwide. Management of such conditions in healthcare settings has been framed as a challenge for healthcare systems, and people living with long-term conditions often experience fragmented care. Integrated care approaches have been advocated as the solution, but few studies include the work done by patients and its significance for care processes. The present study aimed to explore the work of people with long-term conditions in the unfolding of their care trajectories. The study is based on semi-structured interviews of people living with chronic obstructive pulmonary disease and musculoskeletal disorders. The participants were all home-dwelling and living in Norway. Reflexive thematic analysis was used to guide the analysis. Theory about work as theorized by Strauss et al. was central to the analysis. The persons highlight that they feel that it is up to them to ask questions and initiate care, that they monitor their bodies to be equipped to act adequately when changes occur, and that they engage in deliberative interaction with healthcare personnel. The findings add depth to current knowledge and highlight that people living with long-term conditions participate in the unfolding of their care trajectories by doing comprehensive work. Framing what people with long-term conditions do when participating in their care trajectories as work brings forth aspects of healthcare use that may be less visible for healthcare personnel and enables addressing individual care trajectories as intertwined with patient work.

Background

Long-term conditions are one of the major causes to morbidity and death worldwide, covering a range of varying health problems, and by 2030, the global cost of such conditions is predicted to reach $47 trillion (Hacker, 2024; Yach et al., 2004). People can have more than one long-term condition, and these can have multiple causes that cannot be easily separated (World Health Organization, 2002; Yach et al., 2004). Long-term conditions prevail over time and often warrant a complex and multidisciplinary approach including collaboration between healthcare providers across healthcare contexts (Nolte & Mckee, 2008). The management of these long-term conditions has been framed as a challenge for healthcare systems, and it has previously been argued that the problem stems partly from the organization of health systems, which are more oriented towards dealing with acute or episodic disease. In a landmark 2002 document, the World Health Organization (WHO) advocates for a reorientation of healthcare systems to accommodate long-term conditions, criticizing acute care models for being poorly fitted for those living with long-term conditions (World Health Organization, 2002).

The term fragmented care is commonly used in both research and policy to describe the organizational challenge of dealing with long-term conditions within healthcare systems not sufficiently geared towards those living with these conditions. Even though there is no unified definition of what fragmentation entails in healthcare research, it can be said to concern care that is described as of low quality due to discontinuity and poor coordination between healthcare providers. This can lead to dispersed services and navigational challenges for those affected by long-term conditions. Healthcare systems are therefore not sufficiently attuned to fit the nature of long-term conditions and subsequently the needs of those afflicted (Joo, 2023). It has previously been pointed out that fragmented care can lead to inefficient use of resources, that it represents a risk for adverse patient outcomes, and has consequently been addressed as a central concern for patient safety, for example, in transitions between levels of care (Edwards et al., 2022; Kern et al., 2018; Nguyen et al., 2020; Prior et al., 2023). In sum, consequences of fragmented care entails both a risk, due to an increased chance of harmful events in relation to treatment, and a burden of care for those living with long-term conditions.

As a result of the high prevalence of long-term conditions, the challenge that these conditions represent for healthcare systems, and the risk and burden that fragmented care poses for people living with long-term conditions, the WHO has advocated for integrated care as a paradigm for redesigning healthcare systems (Hughes et al., 2022; World Health Organization, 2002, 2018). The focus on integrated care as the solution from a policy perspective has led to a plethora of integrated care initiatives worldwide. Health services research concerning integrated care has therefore predominantly concentrated on evaluations from the perspective of healthcare providers (Hughes et al., 2020). Furthermore, evaluations are challenged by the multiplicity of meanings given to the ideal of integration, making consistent advantages of integrated care difficult to attain (Anvik et al., 2019; Hughes et al., 2020).

The international foundation of integrated care has conceptualized the nine pillars of integrated care as a guiding framework for action (Lennox-Chhugani, 2021; Shearkhani et al., 2023). Despite people as partners in care being one of these pillars, research on integrated care or linked initiatives focusing on patients’ experiences have raised questions about the person-centeredness underlying such approaches. These approaches are often concerned with how patients fit within healthcare contexts and less with how healthcare services fit in people’s lives. Thus, the following question remains: Are healthcare services failing to meet the needs of individuals (Blackwell et al., 2024; Greenfield et al., 2014). Hughes et al. argue that integrated care structures do serve as a lens for professional action, but that this only represents a “(…) small portion of the complex networks patients mobilize to sustain their lives at home” (Hughes et al., 2022, p. 115). Blackwell et al. highlight the influence of people’s dispositions and the socio-cultural and material aspects of patients’ lives in healthcare decision-making and their care, and state that healthcare providers should consider the resources at peoples’ disposal in care processes (Blackwell et al., 2024).

In Norway, policy documents and interventions promote more person-centred care and better coordination and integration between care providers to ameliorate the known shortcomings (Oksavik et al., 2021; Sørensen, 2021). A review of research on coordination of care for people with complex needs in Norway stated that research in this field largely takes a service provider perspective and that there is a lack of studies taking the patient perspective as its starting point (Sandvin et al., 2022). However, as others have previously pointed out, much of long-term condition management is done by those affected by illness (Gately et al., 2007), often alone in the context of their daily lives (Yin et al., 2020). Allen et al. argue that policy makers need to attend to all constituent elements of healthcare delivery while also acknowledging the interdependencies of those involved (Allen et al., 2004). In order to develop practical solutions for managing long-term care, it is therefore essential to explore its current functioning from multiple perspectives, including that of those affected by long-term conditions (Greenhalgh, 2009; Vaagan et al., 2021).

To include the multiplicity of perspectives, organizational contexts, and acting individuals present in management of illness, the concept of illness trajectory has been deployed to study illness management in recent decades (Riemann, 1991). The concept brings a simultaneous focus on the unfolding of an illness in time, the work done during that unfolding, and the impact on those involved (Corbin & Strauss, 1985; Glaser & Strauss, 1968; Strauss, 2008; Strauss et al., 1997). The latter emphasizes the presence of multiple actors and points to the interdependency between participating actors (Strauss, 2008; Timmermans, 1998). The premise is that even though the course of the disease itself may not be modifiable, the management and response to it can be shaped and managed by the actions and interactions of those involved in care processes (Boeije et al., 2002).

To gain a deeper insight into the features of long-term conditions and the management of these from the patient’s perspective, we address two diagnosis groups that serve as example cases: chronic obstructive pulmonary disease (COPD) and musculoskeletal disorders (MSDs). COPD has been defined as “a heterogenous lung condition characterized by chronic respiratory symptom” and is the third leading cause of death worldwide (Agustí et al., 2023, p. 1; Boers et al., 2023; Tamondong-Lachica et al., 2023). In Norway, approximately 6%–7% of people over 40 years have a COPD diagnosis (Nystad et al., 2022). MSD is a term used to describe a variety of illnesses involving bones, joints, muscles, and connective tissues (National Academies of Sciences, Engineering, and Medicine et al., 2020). These conditions are among the most debilitating conditions in terms of disability, are linked to high healthcare costs, and have previously been described as the most common cause for sick leave in Norway (Chi-Lun-Chiao et al., 2020; Kinge et al., 2015). The two diagnoses may seem dissimilar, as COPD can be said to be clinically distinct and based on objective findings, while MSD is an umbrella term that includes symptom-based and diffuse conditions. However, the two diagnoses also share commonalities in being of long duration, involving emphasis on lifestyle changes, and often leading to diverse healthcare contacts with multiple care providers across organizational boundaries. In addition, both conditions have previously been described as stigmatizing (Choi et al., 2014; Woo et al., 2021).

By addressing more than one diagnosis in this study, we step away from traditional ideas about how the disease itself dictates treatment over time and instead turn our attention to the long-term perspective inherent in and across diagnoses. Recent registry-based studies from Norway have documented substantial variation in health services utilization patterns among both COPD and MSD patients with seemingly similar health conditions and care needs, based on group-level data (Amundsen et al., 2023, 2024; Moger et al., 2024). This variation cannot be fully explained by clinical factors alone, suggesting that other elements, such as patients’ own actions, preferences, and interactions with healthcare personnel, may play a significant role. Building on this, the present study explores how patients’ individual efforts before and during encounters with healthcare personnel influence their subsequent service utilization and trajectory through the healthcare system. This article contributes to existing literature on healthcare use in long-term conditions by exploring how people with such conditions participate in the unfolding of care.

Theoretical Framework

In this study, we use the term work to describe the efforts of lay people when managing long-term conditions. This reflects the active, and often time-consuming, role of people with long-term conditions and their efforts to participate in healthcare (Ancker et al., 2015; Corbin & Strauss, 1985; Dalsted et al., 2012; Grape et al., 2015; Mattingly et al., 2011; Roberti et al., 2018; Strauss et al., 1982; Yen et al., 2013). Dalsted et al. argue that by deploying the term work, one steers away from the imagery that healthcare professionals do primary work, while patients do secondary tasks (2012). We adopt this view.

In their categorization of patient work, Yin et al. describe a continuum of tasks that people do during the entirety of their care trajectory. This includes visible and collaborative tasks but also invisible or cognitive tasks (Yin et al., 2020). The latter is also discussed by Star and Strauss who underline that work done by patients may be invisible to those that do formal work (e.g., doctors) (YStar & Strauss, 1999). Such tasks can be central in the unfolding of individual care trajectories and resource consuming, yet they remain underappreciated or silent factors within clinical contexts and only addressed when patients experience them as overwhelming (Yin et al., 2020).

Existing research on patient work is usually bound to defined contexts, for example, a clinical setting or in the home, and assumes the presence of a separated duality between people’s everyday lives and clinical settings (Langstrup, 2013, referencing; Glazer, 1990; Charmaz, 2002; Dalsted et al., 2012; Strauss et al., 1982). However, some argue that management of long-term conditions is a dynamic process that takes place at the intersection of lived realities and clinical arenas (Mattingly et al., 2011). For example, in a study exploring the role of people with multiple chronic conditions in personal information management (PIM), the authors describe PIM as invisible work done by patients since it took place in the spaces between institutions (Ancker et al., 2015). Mattingly deploys the term border zones to address the emerging space between people’s homes and clinical contexts where people with long-term conditions execute tasks (e.g., medication regimes) (Mattingly et al., 2011). Others highlight the arrangements that dealing with long-term conditions brings forth in people’s daily lives and underline that long-term condition management in people’s homes and in interaction with the healthcare systems is interdependent and intertwined (Langstrup, 2013).

Despite an increasing focus on patient work and the development of frameworks focusing on collective action and the division of labour in healthcare through ecological approaches (Allen, 2018), few have explored the work done by people living with long-term conditions in the unfolding of individual care trajectories. However, such knowledge is needed for developing sustainable care solutions that include a comprehensive understanding of patient’s involvement in their care trajectories. The aim of this paper is therefore to explore how people living with long-term conditions relate to their symptoms, how they approach the healthcare system, and in sum how they participate, or do work, in their care trajectories.

Methods

We applied an explorative qualitative design using semi-structured interviews, seeking to provide insight into both individual and situational aspects that the participants deemed as relevant and decisive for their care trajectories.

Research Setting

The participants in this study all lived and received healthcare services in Norway, which in 2021 had the highest long-term care spending per inhabitant in Europe (OECD & European Observatory on Health Systems and Policies, 2023). The foundation of the Norwegian health and social care system is the Scandinavian welfare model, which seeks to provide all citizens with access to a wide range of benefits (Clarsen, Nylenna, et al., 2022; Romøren et al., 2011). The healthcare system is divided into primary and secondary care. For the most part, care is delivered in primary care, in accordance with the principle that states that problems should be dealt with at the lowest possible service level (NOU 2023: 4, 2023). Each of the 357 municipalities in Norway has the overall responsibility for its population’s public health, including carrying out and organizing primary care services in line with existing laws and regulations. In 2001, the general practitioner (GP) scheme was introduced, giving all citizens the right to a GP who has a primary and often coordinating role in patients’ care (OECD & European Observatory on Health Systems and Policies, 2023). Secondary care services are provided by four regional health authorities that are owned by the state. This means that a person who needs services across the healthcare landscape meets professionals that do their work within divergent economical and governing frameworks (Hellesø & Opheim, 2023).

Recruitment and Participants

Permission to conduct the interviews and store data was granted by Sikt (the Norwegian Agency for Shared Services in Education and Research) (reference number: 936998). Audio files and transcripts of the interviews were kept in TSD (services for sensitive data), a secure database for storing sensitive data. All participants received information regarding the study and its procedures and provided consent either written on paper or digitally prior to participation. Participants were recruited through a combination of purposive sampling and self-recruitment. Most participants were recruited in collaboration with clinicians in specialist and primary healthcare settings. Collaborating clinicians informed potential participants about the study or had posters about the study in their offices. Some did both. In addition, information and posters about the project were distributed to special interest organizations, some of whom posted information about the project on their social media platforms.

The interview guide consisted of questions about challenges related to living with a long-term condition, whether the participants had experiences that indicated collaboration between healthcare personnel, and what expectations they had on collaboration between healthcare providers. A network diagram, consisting of four concentric circles, was applied to encourage reflections on healthcare use and the relative importance of different care providers involved in managing their long-term condition. In this diagram, the innermost circle represents the participant (labelled “You”). The three (unlabelled) outer circles represent people and services of decreasing importance as they move farther from the centre. In the interview setting, the diagram was presented to the participants, and they were asked to place care providers within this diagram, ranked by their perceived importance: more important providers should be placed closer to the centre and less important further away from the centre. The use of the network diagram allowed the participants to talk about their experiences using their own words without focusing on chronological ordering but instead on interactions with care providers that was perceived as important. This part of the interviews included reflections and talk on both positive and negative experiences about services that were relevant for the participants at the time of the interviews and allowed for retrospective reflections. The use of the diagram also led to talk about how the participants had ended up with a particular service.

The duration of the interviews varied from 22 to 117 min, and the mode was chosen by the participants. Some of the interviews were therefore carried out using a video communication platform, some by phone and others face to face. The location of the latter also varied in line with the participants’ wishes. Some were carried out in offices located at a clinical collaborator, some were in the participants’ homes, and one was at our office. This approach made it possible to include participants from different parts of Norway and to include participants with disabilities hindering them to meet face to face. All interviews were audio recorded.

A total of 21 participants from 9 of the 15 counties in Norway were interviewed. Fourteen people with MSD and seven with COPD were included. All the participants understood and spoke Norwegian, and their age ranged from 45 to 86. Inclusion criteria were that participants had to be home-dwelling, had to have one of the mentioned long-term conditions, and had used healthcare services in the follow-up or management of that condition. The majority (16) were female. Some participants lived alone while others resided with a partner, spouse, or one or more other family members. Three participants had caring responsibilities for children under the age of 18. To show the presence of both diagnosis groups in the analysis, quotations are marked with a number and either COPD or MSD.

Most of the participants with COPD did not know what grade of COPD they had but had been living with the diagnosis or lung disease for several years. Some participants with COPD received team-based follow-up which included regular contact with specialist care, while others did not. A few of the participants who were recruited because they had one of the diagnoses also happened to have the other diagnosis. Most of the participants had more than one diagnosis, for example, allergies, asthma, diabetes, autoimmune disease, high blood pressure, and osteoporosis. This meant that some had diagnoses other than COPD or MSD that they described as more pressing for them (e.g., heart disease). This is in line with previous research that points out that both physicians and patients have a tendency to view concomitant conditions as more important than, for example, COPD (Ansari et al., 2014; Molin et al., 2016). In sum, the participants experienced overall complex health situations, and their care trajectories and experiences with managing their long-term conditions were not shaped by a single condition alone.

Analysis

Data analysis was guided by the reflexive thematic analysis approach as described by Braun and Clarke (Braun & Clarke, 2019, 2022, 2023). This six-step process was chosen due to its theoretical flexibility, acknowledging researcher subjectivity as central in knowledge production process and allowing the authors to draw on the theoretical concepts previously presented (Braun et al., 2019). The lead author transcribed all interviews using a digital tool for manually transcribing audio files. What was considered sensitive information (e.g., names and places) about the participants was removed during transcription. Initial coding was produced in Word and was mainly data-derived and semantic, producing an abundance of codes that were close to the text in the interview transcriptions and that reflected participants’ own language (Braun & Clarke, 2013; Tjora, 2018). Reading and re-reading the interview transcripts and the initial coding assisted in familiarization with the dataset and for generating conceptual ideas (Braun & Clarke, 2013). As a result of this process, the theoretical concept of work was made relevant for the further analysis. A second coding phase was carried out in NVivo®, producing a combination of data-driven and more latent researcher- and theory-driven codes. Candidate themes were then developed in discussion between SBH, RH, AUO, and LKB. Final themes were developed through a process of going back to the coded data, discussion between the authors, and writing and re-writing while aiming for an understanding of the focus of each theme.

Findings

The interviews dealt with stories of contact with healthcare providers in different parts of the healthcare system. Central to these stories were talk about the work the participants themselves did as central to the unfolding of their care trajectories. The findings are divided into three main themes reflecting work done by the participants: asking questions and initiating care, monitoring of bodily changes and symptoms, and deliberative interaction with healthcare personnel.

Asking Questions and Initiating Care: It’s Up To Me

Most of the participants felt that the organization of follow-up related to their long-term condition was mainly up to themselves. They described that it was they themselves who addressed questions relating to what to do next in dealing with ongoing challenges, and who asked for referrals to services or long-term action plans for what to do if their situation would worsen. Most of the participants stated that if they did nothing, they ran the risk of their care coming to a halt.

(…) I believe that if I had just sat still and waited, nothing would have happened. Because then the GP wouldn’t have realized that (…) we must refer to a rheumatologist, and it was just completely random that I went to him and had those blood tests taken. Yes, so it’s just a bit of a coincidence really, that has kind of led to where I am now (…). (MSD 7)

The randomness of how individual care trajectories had unfolded through what the participants themselves had done was emphasized by several participants. One participant explained that she got in touch with a COPD nurse through her neighbour and that this was the reason for why she had ended up with the combination of healthcare services that she had to date: “(…) It’s kind of random that I’ve come into contact with all of these (healthcare providers)” (COPD 1).

One participant stated that finding the right services, treatment options, and care providers had been the most challenging part of his care trajectory so far. He described how doing so meant having to know about the organizational structures within the health and social care system and addressing your situation as service providers would, as a case from a third-person perspective. Meaning that communicating with health and social care providers required him to use terminology in line with the provider’s logic.

You do not get anything if you aren’t used to be persistent, requesting and demanding and know the system inside out. (…). (through previous experiences) I know the system and manage to get what I am entitled to. However, there are so many people who are unable to get their rights through, it’s scary. And I think that is terribly troublesome. I know how to go into a system and talk (…). You must argue; you have to discuss your way to your rights (…). (MSD 21)

When the participants talked about being able to ask for the right services and action plans, they also described the underlying notion of risk of not receiving the services they needed. Many were concerned for those who do not have the required resources to participate in the unfolding of their care trajectories. This concern was also related to their future selves when they themselves are older or sicker:

(…) as long as I’m (clear enough) in my head to somehow keep (herself) up to date and follow along a bit myself, it probably works. But maybe it’s just a matter of time, because later you can’t do it anymore. If you get older. And then it’s a problem. (…). We can mostly manage on our own, but the problem is people who don’t manage it so well themselves, and who can’t (…) put their foot down and say that I want help with this and that (…). That’s not how it should be. (COPD 8)

The statement indicates that being able to ask for what you need demands that the participant keeps herself informed and updated on what she can ask for. Another compared her experiences with receiving healthcare in another country and stated that the absence of information has been a main challenge: “(…) I’m constantly discovering things that I feel someone should have told me about, that I’ve found out for myself (…). So yes, information has kind of been a main challenge” (MSD 20). Another explained how she had problems with reoccurring infections and that she after some time decided to ask her GP for a referral to a specialist to find out why this kept happening. She explained feeling that it was up to her to take charge, and to suggest action for resolving the problem. However, she did not necessarily want to be the one with the responsibility to initiate action: “In a way, I expect them (healthcare personnel) to take a little more initiative, that they are the ones who should suggest things that needs to be done” (COPD 8). She states that which healthcare services she ends up using is based on what information she finds and then remembers to ask her GP.

COPD 8: I try to have a notepad lying around, write down new things continuously as they come to mind. Then I’ll take that note with me when I go to the GP. (…) It depends on me; what I remember. There isn’t as much information from him (GP) without me asking for it, as it perhaps should be.

Interviewer: and where do you find information?

COPD 8: (…) you pick up a little here and there maybe. Hear about it on TV, talk a little with people or something. And then it’s more a matter of chance that determines it.

Most of the participants viewed healthcare professionals to be the experts on disease and existing possibilities within the healthcare system and explained that how they themselves found out what to ask for was highly random. For one participant who had a rare long-term condition, Facebook groups where one can ask questions to other people with the same diagnosis were described as the most helpful source of knowledge. Others explained that asking people in their social networks, who had similar experiences or knowledge of the healthcare system, was vital for how they gained knowledge of what to do or what to ask for as they themselves didn’t always know what the possibilities were.

(…) we’re lucky in that sense and have lots of health professionals in the family that we can call and like, what does this mean or what should I ask for or are there any words that can trigger something, that I can use (…). And it’s a bit silly that it must be like that, but we do it anyway. If there is something that can get us through. Is it something they (healthcare personnel) must address? I feel that it’s a bit, it is not pleasant to do it, but I feel that the system is made a bit like that. (MSD 20)

Statements such as the quote above could be followed by sayings like: “It shouldn’t be like that and imagine if you don’t have the resources around you that we had, to push the system (…)” (MSD 21), implying an implicit notion of unmet expectations. MSD 3 stated that she was an advocate for public healthcare services and that everyone should have equal access to services but that just isn’t the case in Norway today as it depends on what you know and do yourself. Some who had previous experiences with, for example, cancer, tumours, or surgeries compared the follow-up they received then with how they experienced their long-term condition care. In relation to the former, healthcare was described as unfolding in a more structured manner without the participants having to look for and initiate access to services and care.

Monitoring of Bodily Changes

The participants described how they kept track of their bodies by focusing on its functioning. The monitoring work they did was done either explicitly or implicitly with bodily function as a baseline for measuring change. This internal interpretation and meaning-making exercise were often part of a long-lasting monitoring process to keep track of a person’s multiple symptoms and diagnoses and involved describing, at least for oneself, an understanding of what was going on. Strategies ascribed to doing monitoring work varied. Some participants used their phones to take pictures or notes while others journaled after seeing care providers.

In addition, some had a heightened awareness for changes related to specific organs (e.g., heart or lungs) that represented conditions that were perceived as especially crucial to monitor. Whichever strategy was deployed, it was carried out to organize symptom experiences and assess related risk. This work was especially challenging in the face of complexity and multimorbidity. As one participant stated, “(…) since it’s so complicated, I have to keep it separated. Is it sciatica or is it the disc herniation, or what is it” (MSD 3). The participant explained that she tried to distinguish if new symptoms represented a worsening of an already existing condition or if it was something completely new. The monitoring work that she had done over time by documenting her symptoms was deployed as learnt knowledge and guided her when evaluating new symptoms. For others who didn’t have a wide repertoire for translating symptoms, recognizing that a worsening represented something new could be more challenging.

(…) Yes, separating the pains from each other, it’s very difficult. (…) I went to the doctor and then she said, well you have inflammation in the hip (…). And I thought (…), maybe my back had gotten worse. (…) I sort of tie all problems to my back. (MSD 5)

The participant in the excerpt above stated that separating the pains she experienced from each other was the most challenging aspect of her situation. Her back was her main challenge, making this the outset for her interpretative repertoire when she experienced a worsening.

Most of the participants talked about how the monitoring work they did demands knowledge, and statements such as “(…) I am glad that I have some medical education myself” (COPD 3) was expressed by many of the participants. Despite the challenges related to monitoring bodily changes, most of the participants in this study presented themselves as responsible healthcare users who did not exhaust healthcare providers more than necessary.

I don’t go running to the GP unless there is something special. So, when I feel that there are things that I maybe should, (…) you know your body quite well after a while (…) and you react to certain things (…). I’ve never had a regular health check or anything like that, I’ve never cared about that. I’ve taken it when I’ve felt it. When there has been something extra. But it’s very difficult you know. What are the big changes in the body, because then you have pain here and then you have pain there and then there is the arthritis (…). (MSD 8)

However, as MSD 8 explains, knowing what kind of bodily changes to respond to was perceived as difficult for several of the participants. They did not want to put unnecessary strain on healthcare providers or to be considered someone who “nagged” unnecessarily. The decision to seek out a healthcare resource was usually the result of a conscious thought process and grounded in a bodily experience that something was not right.

Deliberate Interaction With Healthcare Providers

All the participants described multiple interactions with healthcare providers in different parts of the healthcare system, some which were acute, some routine checkups, or some as part of a diagnostic quest. While some interactions, whether it be face to face or through written words, were perceived as good, encounters that entailed challenges were dominating throughout the interviews. Phrases like “It’s you against the system,” “having to fight to be heard,” “having to argue,” or “the need to negotiate your way through the services” were deployed when describing such interactions, and they reflect the perceived need to be an active participant in individual care trajectories. As MSD 3 said:

I’ve had to fight for every MRI I’ve been through. I’ve had to keep at it to get a second opinion (…). I’ve argued and kept at it. I haven’t argued that much but I’ve asked so many questions that they can’t answer, and then they’ve had to refer me. Because they realize that I’ve delved so deep into this, I’ve read all there is (…) about this issue.

Strategies deployed in such situations are linked to the previously described need for knowledge about existing possibilities and organizational structures within the healthcare system. For those who possessed such knowledge, it could be strategically deployed when interacting with care services.

(…) They know that I will argue if I don’t get my rights fulfilled. And that they will get several medical certificates that they can’t ignore, because they can’t get it (service refusal) through the appeals committee. I have gone to different committees and boards in the municipality to assert my rights. Because I know that those committees exist. (MSD 21)

The need for articulating oneself strategically when interacting with health or social care services was described by several of the participants. One explained that she often got nervous when meeting, for example, a doctor, leading her to chatter when she, paradoxically, knew that an assertive and concrete communication pattern is needed. She stated that interacting with care providers is a difficult task that she hasn’t quite mastered yet and that she therefore has “(…) come to the conclusion that one actually must learn to be a patient” (MSD 4). She adds that this includes that one needs to prepare oneself for appointments with healthcare providers so that they can ask the right questions in the right way in face-to-face interactions.

Others had similar experiences with the need to adapt what they say to who they meet and add that this is not only dependent on oneself but also includes considering how they were met by the other. One participant explained experiencing that while some providers rely on clinical tools in drawing conclusions about her and communicate in ways that is experienced as closing the conversation, others invite to dialogue: “(…) some listen, and then you say something different (…). It becomes more like a conversation than a prescription (…)” (COPD 11). She continues with explaining that when experiencing being cut off or feeling unwelcome in the conversation, she withdraws and does not elaborate on her condition. She adds that encounters with healthcare providers who ask open questions and where the communication is experienced as a dialogue can lead to reflections on her situation in ways that she has not thought of herself, thereby impacting the way she thought of and managed her own situation in a long-term perspective. This deliberative interaction between the present actors was in other words central for information shared in the situation, but also for the future evolvement of the participant’s trajectory.

Discussion

This study sheds light on the work that people living with long-term conditions do and how this work contributes to the unfolding of their care trajectories. Deploying the term work as a sensitizing concept underscores the role of what lay people do as central to the unfolding of care.

The work participants did, in their experience, was dependent on their knowledge of their condition and had significance for their care trajectories. This is in line with previous research on patient work involved in attending formal care for diabetes, which states that having a long-term condition requires a variety of skills and that taking initiative and deploying the needed skills is crucial for receiving care (Rogvi et al., 2021). That patients may enter the process of producing healthcare and become a, often unrecognized, part of the division of labour was presented by Strauss et al. in relation to hospitalized patients but has rarely been discussed in relation to long-term care that takes place in a variety of contexts (Strauss et al., 1997). The informed query for services and action that the participants described that they did in interactions with healthcare providers also resonates with Blix et al.’s work on factors influencing GP referral practices to hip and knee arthroplasty in northern Norway. In their work, Blix et al. state that GPs experience patients as increasingly well-informed about medical matters and that patients deploy their knowledge when asking for referrals and thereby impacting referral practices among GPs (Blix et al., 2025).

The active partaking in individual care trajectories that the participants described in this study is in line with previously reported patient experiences for people receiving care within formal cancer pathways in Denmark (Dalsted et al., 2012). Dalsted et al. argue that patient work is central to the evolution of care, not only in unstructured care trajectories like with MSD and COPD but also within more formal organizational structures. The authors state that even though patients described the non-formalized tasks that they did as important for the way their care evolved, these tasks were not addressed by the formal structure of healthcare delivery (2012). Because of this, the authors add that even when a formalized structure for care exists, “(…) the actual patient trajectories might turn out differently and include several situations and events not accounted for in the formal planning (…)” (Dalsted et al., 2012, p. 6). In addition, doing the work described in articulating symptom experiences and stating one’s needs in interactions with healthcare providers must be done in a way that makes sense in the medical domain. How people explain their bodily sensations within healthcare encounters has importance for care processes in clinical contexts. This has been described in a previous study exploring how experienced pain is deployed as learnt embodied knowledge in women with endometriosis. The authors argue that well-known challenges that people face with endometriosis, for example, struggle to achieve treatment and precise diagnosis, are often caused by difficulties with translating bodily sensations to a language that bears meaning and is deemed as legitimate within clinical settings (Helosvuori & Oikkonen, 2024). Acknowledging and exploring the role of patients in care processes can make visible situations that can be challenging for those seeking out care services and that needs to be dealt with as such by care providers.

Responding to bodily sensations and deciding whether to seek out medical care have previously been described as a situation challenged by contradictory norms for good citizenship. The Goldilocks Zone, referring to both the children’s story and astrobiology (where the term is used for the zone surrounding a star where it is neither too hot nor too cold for water to stay liquid), has therefore been suggested as an apt metaphor for the ambivalence and challenges that people face when balancing contradicting norms of what it means to be a responsible user of healthcare services (Ziebland et al., 2019). In the current study, the participants struggled with knowing when a bodily change was a legitimate reason for seeking out medical expertise. Considering the potential risk of bodily symptoms was regarded as crucial, but the evaluation of symptoms was challenged by multimorbidity and existing knowledge that constituted a person’s interpretative repertoire. This highlights how bodily sensations are ascribed their meaning and language within moral sensescapes and that the interpretation of and response to bodily changes are influenced by both previous knowledge and governing cultural norms (Andersen et al., 2017). This is consistent with studies on healthcare-seeking behaviour in people with early symptoms of cancer which state that governing norms for seeking healthcare led people to having conflicting ideas about how to act and respond to symptom experiences. On the one hand, people are encouraged to seek out medical expertise in due time and not put themselves and their future health at risk by delaying potential treatment. On the other hand, there are co-existing norms of “good citizenship” that entails that one should not exhaust healthcare providers unnecessarily (Hultstrand et al., 2021). This may explain why the participants found monitoring of bodily symptoms as both a challenge and a necessity.

In addition, our results highlight that being able to consider and act upon bodily symptoms can be challenging as the situation demands different kinds of knowledge. The participants’ knowledge did not mirror biomedical information alone but was instead a pragmatic, learnt know-how that represented a mash-up of previous experience, biomedical information, research reports found on the internet, advice from an acquaintance, and previous knowledge about the medical system. According to Pols, patient knowledge should not be reduced to experiential knowledge alone, as this silences the ways in which what happens in medical contexts is connected to the daily life practices, values, and norms of those living with long-term conditions (Pols, 2014). Making visible the knowledge needed in long-term condition care trajectories and how this is related to work that people living with long-term conditions do could facilitate better understandings of why individual care trajectories turn out the way they do. A primary consideration underlined by the participants as a source to randomness in their health care use was the need for knowledge about the healthcare system. The need for patients to navigate a complex healthcare system has also been termed a key challenge for patients, by healthcare personnel, leading patients to feeling overwhelmed and discouraged, and potentially causing distrust and scepticism towards care providers (Nielsen et al., 2025). Initially, when first receiving a diagnosis, most people lack the organizational knowledge needed to be aware of existing possibilities and how to navigate between care providers (Gui et al., 2018). Which knowledge the participants had acquired and thereby which services they were able to ask for was described as a source to randomness and risk in their care trajectories.

Despite the existence of guidelines for care management and the subsequent expectation of predictability in service use, large variations in healthcare use have been previously described. For example, a recent Norwegian study showed that those accessing physiotherapy for MSD had a higher socioeconomic status, in the form of higher income and education, than those who mainly used GP services (Amundsen et al., 2023). Our findings can help shed light on issues related to variation in healthcare use, by showing how individuals with comparable clinical conditions and seemingly similar health conditions and care needs end up in different care trajectories – in our study influenced by the work they do themselves.

Strengths and Limitations

Although gender differences in patient work were beyond the scope of this study, we assume that experiences related to managing long-term conditions and seeking out healthcare services are gendered. We encourage caution in interpreting the findings in this study in a gender perspective and also acknowledging that the majority of the sample had an MSD diagnosis which occurs more frequently in women than men (Clarsen et al., 2022; Ihlebæk et al., 2010). Participants in this study all did work to contribute to the unfolding of their care trajectories, meaning that they had the resources to do so. Some of the participants that initially agreed to participate withdrew due to acute illness, hospitalization, or more general deterioration of their long-term condition or other co-morbid conditions. This was especially relevant for participants with COPD. In addition, none of the participants had immigrant background. We therefore assume that the knowledge produced in this article may not apply to all people living with long-term conditions regardless of disease and symptom severity. In addition, the organization of the Norwegian healthcare system may differ from that in other countries and the findings cannot be understood without considering the context within which they were constructed. However, by exploring care trajectories as it is experienced by people with two different long-term conditions, we shed light on central challenges with conditions that prevail over time and acknowledge the inherent complexity present in them.

Conclusion

To overcome the challenges that people with long-term conditions face in management of care, the dominating debate looks to solutions highlighting better coordination of care processes and system-level perspectives, for example, through initiatives linked to the logic of integrated care as a guiding framework for action. These approaches tend to describe the formal work processes of healthcare personnel but do not consider the work of the patients. But, as this study has shown, people with long-term conditions do significant work in the unfolding of their care trajectories.

In line with the participants’ concern for their future ability to be an active worker in their care trajectories if debilitated by, for example, disease, it is likely that the capacities, needs, and resources of individual patients may vary. We therefore concur with Dalsted et al. (2012) who state that articulating patient work within structured care systems can be challenging. Nevertheless, leaving patient work a silent variable in understandings of care trajectories risks depicting only parts of what constitutes the total arc of work in long-term care trajectories.

If the challenges of managing long-term conditions within healthcare structures and the impact of fragmented care on people living with long-term conditions are to be understood, a broader view, that also includes the work done by patients, is needed. The present study provides novel insights into healthcare use by people with long-term conditions as experienced and exemplified by those with two prevalent long-term conditions. This knowledge is necessary as a motivation for future research and not least for decision makers developing care services that are perceived as good for people living with long-term conditions. Future research and deliberations should include knowledge on the work that patients do and why such work is considered crucial for those doing it. Only then can one start to comprehend why individual care trajectories unfold as they do and how work done by those affected by illness is linked to formal care processes.