1. Introduction

Low back pain (LBP) remains a common problem imbued with uncertainty. For instance, although there is clear indication that LBP is burdensome, there is considerable uncertainty regarding its prevalence and burden because of incomplete coverage and limitations of the primary prevalence research.42 It is not only epidemiological research findings that are uncertain; uncertainty also permeates the aetiology of LBP. For most individuals, it is not possible to identify the precise cause of LBP,32,45 which may contribute to uncertainty in screening for serious pathology15 and how to communicate nonspecific diagnoses.41 Diagnostic uncertainty also affects those receiving care; it is accompanied by stigma40,41 and associated with poor prognosis and higher levels of disability and depression.39 When the expected linear progression of diagnosis, treatment, and resolution does not occur, uncertainty pervades and undermines hope.8,31,36 Notably, prognosis of LBP is difficult to determine, with most prediction models performing poorly.26 Perhaps unsurprisingly, there is also uncertainty about the best management of LBP; although evidence from meta-analysis suggests that treatments such as exercise are moderately effective,23 uncertainty remains regarding which individuals may benefit.23,24 Interestingly, individuals with LBP may feel uncertain about exercise. Qualitative research has suggested that although people with LBP often believe that exercise can prevent or reduce future LBP, some experience uncertainty about undertaking exercise that is unfamiliar1 or exercising while in pain.14

Although the uncertainties surrounding diagnosis, prognosis, and management have been discussed in the LBP literature, the uncertainty clinicians experience when working with individuals with LBP is not limited to these biomedical aspects. For example, a qualitative study with clinicians who work with people who experience LBP suggests that clinicians experience uncertainty in a range of scenarios, including adapting care to patients' personal and social contexts; responding to emotions and mental health; making therapeutic decisions; communicating with, and delivering educational information to, patients; and more.9 These findings suggest that uncertainty is ubiquitous in LBP, extending to and beyond biomedical aspects of care.9 Clinicians participating in that study described how the uncertainty they experience is often relational and underpinned by patients' previous experiences with health care, their values, beliefs, emotions, and social determinants of health.9

Although researchers are starting to develop some understanding of clinicians' experiences of navigating uncertainty, little is known about individuals' experiences of navigating uncertainty when seeking care for their LBP. To date, the literature exploring such experiences has mostly focused on diagnostic uncertainty.31,38 For instance, qualitative interviews with individuals experiencing chronic LBP revealed that diagnostic uncertainty was often accompanied by distress and further care seeking.38 Within this context, diagnostic uncertainty undermined the perceived seriousness of the problem and created confusion about why symptoms persist, how they should be treated, and who will take responsibility for controlling the pain.38 Based on such findings, the authors proposed a theoretical framework to understand the implications of diagnostic uncertainty, which includes social, cognitive, emotional, and care-seeking implications.38 Similarly, qualitative analyses of patients' narratives about the process of diagnosing back pain suggest that those women for whom diagnostic uncertainty remained after seeking care experienced emotional challenges. This was particularly the case when they were told “it is all in your head,” which made them feel disrespected.31 When physicians cannot locate the problem and provide a clear diagnosis, patients may feel that their pain is delegitimised, creating a sense of not being seen and not being heard.36 Taken together, these findings suggest that diagnostic uncertainty has important implications for people who experience LBP. However, to our knowledge, there is no research investigating uncertainty beyond that related to diagnosis. Likewise, individuals' perspectives about how uncertainty could be better navigated in LBP remain unexplored. A greater understanding of these aspects could offer insights about how clinicians could better navigate uncertainty with patients.

The overarching aim of this study is to gain insight into individuals' experiences of navigating uncertainty within the context of LBP care. Our specific aims are 2-fold: (1) to explore individuals' experiences of navigating uncertainty within their LBP care, with a view to better understand the contexts in which uncertainty occurs, and (2) to understand their perspectives of how uncertainty could be better navigated during clinical encounters.

2. Methods 2.1. Design

We used an inductive qualitative methodology to explore individuals' experiences of navigating uncertainty when seeking care for LBP. Data were gathered through online in-depth semistructured interviews. This study was approved by the Human Ethics Board of The University of Queensland (2021/HE001723).

2.2. Participants and recruitment

We invited adults (18 years or older) who self-identified as currently having or having had LBP for which they have sought health care to participate. We did not exclude participants based on specific criteria, but as the study advertisement was written in English, we may have unintentionally excluded people not fluent in English. Volunteers were recruited from the community Australia wide through advertisements on social media platforms, consumer pain organisations (eg, Arthritis Australia), and word of mouth. Recruitment was predominantly convenience based but had purposeful elements because we sought to include participants with different ages, levels of education, and LBP trajectories (eg, episodic, persistent fluctuating pain16). An interview was organised with those who provided consent to participate in the study. We ceased data collection when iterative analysis determined that there was adequate depth of themes related to the study aims.44 Said differently, the authors considered whether the themes aligned with the research aims in a meaningful way, the quality of participants' responses, the emotions and reflections the data evoked on researchers, as well as the diversity of participants and their experiences. Consistent with our relativist approach and reflexive thematic analysis principles, the determination of the depth of themes was thus subjective, collaborative, and multifactorial.3

2.3. Procedure

All interviews were conducted by 1 of 2 female physiotherapists (N.C. or P.B.). N.C. has a PhD in physiotherapy and experience with qualitative research. P.B. has 5 years' experience of working with patients with LBP, is currently undertaking a PhD in physiotherapy, and has received training in qualitative research. Interviews were conducted through the online video conferencing software (www.zoom.us) between September 2021 and February 2022. Interview questions were created by N.C. and J.S. (Appendix 1, available at https://links.lww.com/PAIN/B869), who designed primarily open-ended questions to invite participants to discuss their experiences of navigating uncertainty during clinical encounters. For instance, we asked participants about their LBP experiences, what healthcare professionals were consulted because of their LBP, scenarios where either the participant or the healthcare professional experienced uncertainty, how uncertainty was navigated, how participants felt about it, and what they thought the healthcare professional could have performed differently. At the end of the interview, participants were asked to draw a picture that depicted their experience of uncertainty over their journey with LBP; the drawings (and participants' discussion of them) are not analysed in this paper and will be presented in a subsequent manuscript. Interviews lasted for an average of 47 minutes and ranged from 37 minutes to 1 hour. Each interview was recorded, stored securely, and uploaded to secure online transcription software (www.otter.ai). N.C. deidentified and checked all transcripts to ensure confidentiality and accuracy.

2.4. Analysis

Our analysis was underpinned by relativism, which posits that there is no single reality; different people experience given phenomena differently.13 We analysed the interview transcripts using reflexive thematic analysis (TA).3 Reflexive TA is a flexible analytical method that enables researchers to make sense of meaning across a data set, with relevance to understanding each individual's experiences with uncertainty in the context of their LBP care.3 In alignment with our aims, theoretical underpinning, and the audience we are aiming to reach (ie, mostly clinicians, but also researchers and policy makers), we adopted a descriptive approach to our reflexive TA. The analysis team consisted of the 2 interviewers described above, a physiotherapist with a PhD in psychology (J.S.), a medical sociologist (R.O.), a senior lecturer in physiotherapy (R.F.), and 2 physiotherapists undertaking a PhD in physiotherapy (M.D. and K.M.). As reflexive researchers, we recognise that the results presented here are subjective and influenced by our positionality; our knowledge and background played a role in how we framed the questions, coded the data, and gave meaning to the results. We approached this research by combining our expertise in physiotherapy, psychology, social science, public health, and qualitative and postqualitative research. Six of us are also influenced by our previous experiences of working with people who present with LBP. Although our study was underpinned by relativism, we collectively bring a range of experiences with philosophical perspectives, including (post)positivism, relativism, postmodernism, and posthumanism, which is likely to have influenced our discussions during team analysis meetings and our interpretation of the data.

Our research team analysed the data inductively, meaning that the analysis was grounded in the data, as opposed to preexisting theory or research.2 To be clear, that does not mean that our analysis was objective. Reflexive TA acknowledges and values researchers' subjectivity as a resource rather than a problem, and therefore, while the analysis was grounded in the data, the codes and themes are produced by researchers through their engagement with data.3 Although there are many ways of doing reflexive TA,3 our analysis adopted the following approach: first, the team had two 2-hour meetings to inductively review and discuss 6 interview transcripts. These meetings were audio-recorded, and the main discussion points from each meeting were summarised by N.C., who wrote analytic summaries and shared them with the team. Second, based on these initial team analyses, N.C. inductively coded all transcripts using NVivo to organise the data and developed the provisional themes. Third, N.C. and J.S. met and refined the themes collaboratively, discussing how to best present them. Finally, the proposed themes were then reviewed and refined by all team members during manuscript revisions. Disagreements were included in the findings. Instead of checklist approaches to quality, which have been critiqued for the lack of credibility,6 rigour was guided by Braun and Clarke's recommendations for reflexive thematic analysis quality, such as inclusion of a justification of how reflexive TA is consistent with the research aims and context, explicitly discussing that TA is not a homogenous procedure, being clear about our positionings, and reporting themes that give rise to actionable outcomes, to name a few.2

3. Results

We interviewed 15 participants, whose age ranged from 21 to 75 years (mean—42 years). Ten identified as women and 5 as men. All participants had experienced LBP for at least 2 years, with symptoms fluctuating over time—10 participants had fluctuating ongoing symptoms, and 5 reported fluctuations interspaced with pain-free periods. Pain levels at the time of the interview varied from 0 to 7 on a 0 to 10 scale (mean [SD]—2.7 [2.5]). Further participant details are provided in Table 1.

Table 1 - Participants' characteristics. Participants' characteristic N % Sex  Men 5 33  Women 10 66 Age  Younger than 30 y 4 27  30-59 y 9 60  ≥60 y 2 13 Ethnicity  Caucasian 9 60  Latino 2 13  Asian 1 7  Mixed 3 20 Country of birth  Australia 7 47  Others 8 53 Socioeconomic background (based on the socioeconomic index of location*)  1st quintile 2 13  2nd quintile 3 20  3rd quintile 3 20  4th quintile 3 20  5th quintile 4 27 Education level  High school or less 2 13  Certificate or equivalent 6 40  Undergraduate degree or equivalent 3 20  Postgraduate degree or equivalent 4 27 Time since the first low back pain episode  Less than 5 y 5 33  ≥5 y 10 67 Pain trajectory (visual pain trajectory questionnaire)†  A few episodes of back pain, with mostly pain-free periods in between 6 40  Some back pain most of the time and a few episodes of severe pain 3 20  Pain that goes up and down all the time, with episodes of severe pain 4 27  Severe back pain all or nearly all the time 1 7  Back pain that has got gradually worse 5 33  Back pain has improved gradually 1 7 Current pain level Range Mean 11-Point Numerical Pain Rating Scale 0-7 2.7

*Socioeconomic indexes for areas were developed by the Australian Bureau of Statistics and ranks areas/postcodes in Australia according to relative socioeconomic advantage and disadvantage (first quintile—most disadvantaged; fifth quintile—most advantaged).

†Five participants thought that their pain trajectory was better described by 2 categories rather than 1.

All participants recalled at least 1 scenario in which they navigated uncertainty while seeking care for their LBP. They provided detailed narratives about their experiences and suggestions about what clinicians could do to help them to navigate uncertainty in this context. Our reflexive thematic analysis produced 4 themes that provide insights into uncertainties participants experienced. The theme names are framed as questions, to reflect the unsettled nature of participants' discussions of navigating uncertainty: (1) What will happen over time?; (2) Can clinicians help me? Are they willing to?; (3) What are clinicians talking about?; and (4) Am I being taken seriously?. We discuss each theme using participant quotations, which are identified under a pseudonym, alongside their age and time since their first LBP experience.

3.1. Theme 1: What will happen over time?

Uncertainty was situated in time, including the present moment, past, and future. When asked about scenarios in which they experienced uncertainty, participants often recalled situations in which they had received a prognosis or diagnosis that made them wonder—and sometimes worry—about what lay ahead. These time-related discussions encompassed uncertainty about losing independence over time, how to prevent LBP episodes over time, not being able to engage with others in the future, and future availability of health care. Participants discussed how both the certainties and uncertainties of the present moment created a sense of uncertainty about how things would unfold over time. For instance, both the certainty of having a specific diagnosis and the certainty of not having one produced uncertainty about how things would unfold over time. Jessica's excerpt illustrates the former:

I remember one in particular, who was a really nice doctor, but I went to see her and she said, “you got arthritis, it will get worse.” That was really awful, because she didn't really give me any guidance as to what I could do… So I felt very uncertain then about my whole future… Jessica, aged 75 years, 10 years since the first LBP episode

Here, Jessica's doctor conveyed certainty regarding both the diagnosis and prognosis of her LBP. When considered alongside her father's history (ie, a diagnosis of arthritis followed by disabling symptoms), these “certainties” prompted Jessica to feel more uncertain about the future, including potentially losing independence. In this discussion, Jessica also provided insights into what the doctor could have done to help her to navigate uncertainty: offer guidance on (and, in turn, a sense of control over) what she could do to navigate the certainty of having a condition with a poor prognosis.

Unlike Jessica's experience of diagnostic certainty, some participants discussed scenarios in which clinicians openly acknowledged uncertainty and how that, in turn, affected both their present and future. For example, Jorge's general practitioner (GP) raised the possibility that his LBP symptoms were not due to the structural changes identified through magnetic resonance imaging (MRI). Such uncertainty left Jorge uncertain about both his prognosis and how to manage the emotions surrounding an uncertain future. When asked about how he felt in response to what the GP said, Jorge replied:

Frustrated again… I wasn't mentally or physically prepared to, or even emotionally prepared to start having a chronic condition. I was still hoping that it would be an acute condition. But as time passed, I sort of saw it progressing, the pain was still the same sometimes going up, going down, but not going away… the uncertainty of not knowing how this condition will resolve… And I'd say that, although I've been with pain for the last two years, I'm still poorly prepared to manage uncertainty. Jorge, aged 36 years, 2 years since the first LBP episode

Having the certainty that LBP symptoms were not due to a condition or structural changes in the spine also produced uncertainty, but with a different focus—it created uncertainty about what was causing LBP symptoms and, consequently, uncertainty about how to predict future episodes. For instance, as illustrated by the quote below, although Luke felt less worried about his back after receiving MRI findings that did not detect anything relevant to his pain. Yet, having an MRI finding did not resolve uncertainty—he still seemed worried about predicting when symptoms would come back, which prompted him to consider alternate explanations for his symptoms:

The first confusion for me or uncertainty is the fact that I've had the same thing, the same type of pain come and go many, many times for many years, and then I was certain that something serious was going to come up on that test, but it didn't. So, it's like, okay, so I don't have anything, which is great. I don't have anything serious but this pain… this pain just can't be explained in a test. So that leaves me with this question in my head, because I know that it could come back at any time… and I still won't know, the actual reason why it happens, because the test came back with no issues at all… Luke, aged 32 years, 12 years since the first LBP episode

At times, the difficulties participants were having managing their symptoms in the present seemed to make them feel uncertain about the future. For example, Anna described her current difficulties managing her symptoms and worried that the worsening of her symptoms over time would restrict her social life and ability to engage with others:

I'm not overly social, but I don't like being completely isolated from people. And that's what I feel sometimes, that's where the potential for this is heading. If I lose my mobility because I can't manage the pain, then I'm socially isolated. And then where does that lead to? Anna, aged 53 years, 30 years since the first LBP episode

Anna's uncertainty about her ability to manage symptoms in the future seems tied to the uncertainties surrounding availability of care, bringing attention to role of the wider healthcare system in contributing to people's experiences of navigating uncertainty within the context of their LBP. She later said:

I was on the waiting list to see pain management for nearly two years. Finally got into two different places. One of them was going to be telehealth and I thought “will go with that one then I don't have to travel 200 kms to see somebody” and so I accepted that referral and then knocked back the other one. I did all the intake and then didn't hear anything. I'm thinking “what's going on?” So, following up on it, they've got defunded. Nobody bothered to let me know. So now I have to go back on the waitlist… Most of my personal uncertainty comes down to how long am I going to be able to continue to do this for? How long will it be before I'm not able to do that anymore, and then what happens, but what supports are there past this?… And living rurally too, rural/remote. There's also like, a significant difference in what supports are available. Anna, aged 53 years, 30 years since the first LBP episode

Like for others, the uncertainties Anna experienced were time bounded. For her, being on waiting lists and experiencing uncertainties surrounding future consultations seemed to create concerns other than simply the availability of pain relief, emphasising the importance of healthcare professionals and systems attending to uncertainty. Similarly, Brianna discussed some of the risks the uncertainties surrounding timely appointments brought up for her:

Yeah, that [medication for pain] worked really well. But mentally I… especially with my bipolar now, I ended up in a mixed state, so I was suicidal and hyper at the same time, so it's a really dangerous mix because you've got somebody who's impulsive and suicidal in the one… I was told initially go straight off it, stop taking it… but then not being able to get into the rheumatologist. There's no appointment… So the whole thing is uncertain, trying to get into rheumatology, you very rarely get seen. Like if you're told three months, you very rarely get seen in that three months. If you're told six months. Well, my last six months one ended up extending out to a year. Brianna, aged 48 years, 3 years since the first LBP episode

Taken together, these and similar excerpts indicate that even when uncertainty is seemingly related to specific aspects of LBP such as diagnosis, prognosis, or severity of symptoms, they are often also related to a timescape that underpins broader aspects of one's life.

3.2. Theme 2: Can clinicians help me? Are they willing to?

Participants often expressed experiencing uncertainty about their clinicians' ability to help them and willingness to help them. For instance, they discussed how aspects such as clinicians' behaviour, the cost of appointments, duration of treatments, and their experiences of not getting better despite seeking care produced uncertainty regarding the value of seeking care for LBP. Hong's example is illustrative:

There is uncertainty in different conditions. For me, I was quite uncertain about the cost at first, because I was afraid that if the treatment will resolve my problem, while costing lots of money. So, there was uncertainty about that. Also, as I said about my confidence, if I don't have some real time feedback, and some immediate follow up, I will feel quite confused about my case. So, I feel hopeless sometimes… For the physio I guess they still have a lot uncertainty about each case, because he took lots of time to explore the case and I guess that could be reduced to a minimum time? Hong, aged 26 years, 3 years since the first LBP episode

The initial uncertainties regarding whether clinicians could help him in the context of costs, the lack of communication in-between appointments, and the lack of improvement prompted Hong to not organise follow-up appointments with clinicians and instead manage symptoms on his own—doing stretches by himself and asking a friend to massage his back. Similarly, Jason discussed managing his last LBP episode by resting and stretching rather than seeking care or further investigations. He resolved his uncertainty surrounding the benefits of seeking care by not seeking care. This decision seemed to be underpinned by his previous experiences with clinicians who seemed to him to not care and provide expensive treatments that did not relieve his symptoms:

I've had a few doctors in the past for previous things that maybe they didn't show enough care, or I didn't get the right answers that I wanted. Maybe that had some influence as to why I didn't go back… I just felt like I was rushed out the door, to get to the next patient. And it happened quite a few times… then there is the cost of all the X-rays and whatnot. And then with the chiropractic sessions, you have to come back from multiple sessions and then it still might not have any extra outcome or any extra benefits. You know, I've spent $600 and it hasn't gotten me any better. Jason, aged 29 years, 10 years since the first LBP episode

Although some participants seemed to have resolved their uncertainties about clinicians' abilities to help by avoiding care all together, others discussed still seeking care despite experiencing uncertainties surrounding its benefits. For example, like Jason, Emma seemed to question the clinician's willingness to help her: “I felt a little… a bit shrugged off, to be honest. I didn't feel, I wasn't sure whether she was really expressing a willingness to understand my situation, I didn't know whether she actually wanted to help me or not.” Despite seeing multiple professionals (eg, doctors and physiotherapists) and continuing to do so, Emma continued to experience uncertainty about the treatments she receives:

There's always that uncertainty, at some point, when you're in a huge amount of pain, you start to question: how much is this actually going to do to help me? Is it going to cure me…? There's not really a getting better as such, we aren't getting cured, but you have an uncertainty about every treatment you receive: Is this going to help? Or am I putting myself through more pain for no reason? Emma, aged 34 years, 12 years since the first LBP episode

Uncertainties about whether clinicians were willing to help seemed to lessen when participants felt that clinicians listened to and acknowledged their concerns. For instance, Emma discussed how having a sense of partnership with clinicians had the potential to improve her experiences with uncertainty during clinical encounters: “We're understanding more and more how patient and provider should be working together as a team. If I had felt more like that, then I think it probably would have been a more positive and less uncertain interaction.” Likewise, Helen highlighted that feeling heard by clinicians, as opposed to what she argued were dismissive quick approaches such as getting a script from them, seemed to alleviate uncertainty: “open-ended questions, active listening… if doctors and healthcare professionals did that a bit more, that would alleviate the uncertainty and the confusion, because you actually feel like you're being heard.” Anna discussed how clinicians could use uncertainty in productive ways—to challenge their own assumptions, to remain curious, to be open to other explanations, to listen to patients, and to demonstrate their willingness to help:

The key thing for me would be, as part of any training package, is making sure you actually listen to the person and don't assume! Shuffle your assumptions out the window or up your ass… Don't assume because that's, that's probably the most frustrating part for almost all of us. Is the assumption that “it's not as bad” or “we're lazy.” Or we may, you know, we're trying to milk the system to get drugs or whatever woeful ideas some idiots get… Even actually utilising uncertainty. Approaching it with that uncertainty of what, what exactly is going on here, for that person? Instead of “okay, you've got back pain. This is what we do.” Anna, aged 53 years, 30 years since the first LBP episode

In summary, our analysis suggests that individuals' uncertainties about clinicians' ability and willingness to help could be better addressed by offering communication in-between appointments when needed, addressing participants' concerns about costs and other aspects relevant to them, enacting care as a partnership, engaging in active listening, asking open-ended questions, remaining curious, and challenging assumptions.

3.3. Theme 3: What are clinicians talking about?

Participants often discussed experiencing uncertainty surrounding communication with clinicians: there were uncertainties surrounding the questions clinicians ask, how to explain their symptoms to them, and how to make sense of clinicians' inconsistent messages. For example, Stephanie reflected on a scenario in which she felt uncertain about a question she was asked by her clinician:

The person that I felt the most uncertain with was a rheumatologist… I can remember him just kind of going, “Hey, this is what you have now. What are your goals? What do you think you're going to miss out on by having this back pain?” That was his question to me, and I can remember almost being on the verge of crying because it just kind of felt like a vulnerable question, that brought up vulnerability. Stephanie, aged 41 years, 23 years since the first LBP episode

Stephanie went on to discuss how she tempered her response, thinking that she needed her goals to sound impressive so that the specialist would take her seriously. Here, Stephanie brings attention to how questions that are routinely asked in clinical encounters may be unclear and have unintended outcomes, such as uncertainty and vulnerability. Stephanie's scenario prompts consideration of the importance of examining both the intended and the unintended impacts of the questions clinicians ask and the messages that these may carry. Similarly, Helen discussed that the questions a clinician asked her caused uncertainty, confusion, and worry about her LBP's severity:

The line of questioning, I still remember just trying to figure out how is this all adding up to painting the wrong… How does it all hang together? Is this just another symptom of what's going on over there? Is it something different?… I was a bit confused because I just… where was this going? Did I have cancer in my back or what? What was going on? So yeah, just lead you to be a bit more concerned about what's going on… Helen, aged 55 years, 30 years since the first LBP episode

Helen said that she did not share this confusion and uncertainty with the clinician, which suggests the importance of allowing time to explore patients' concerns during clinical encounters, explaining the rationale behind what is being done and why certain questions are being asked (mentioned by other participants). Drawing from what participants said, it seems that letting people with LBP navigate uncertainties by themselves may be unhelpful, exacerbating fear and anxiety.

Participants mentioned questions asked by clinicians that were unclear or irrelevant to their experiences of LBP. Participants said this left them feeling uncertain about how to respond. For example, Luiza said:

Sometimes I feel like they ask me, but “where is hurting?”, they want me to find kind of spots in my back and I can't… it depends on the day sometimes and sometimes it goes all around. So, I have a lot of difficulty finding the right spot for them and sometimes they ask me to find it. Luiza, aged 29 years, 10 years since the first LBP episode

Here, Luiza discusses a sense of pressure to be certain about the location of her LBP, yet her LBP symptoms varied and moved. Interestingly, Luiza discussed that after being asked this question many times over the years, she felt the need to prepare responses about the location of her pain in advance to reduce this sense of uncertainty for the clinician.

At times, the uncertainties surrounding clinicians' meanings seemed to be linked to inconsistent messages given by different clinicians or by the same clinician at different times. For example, when asked about a scenario in which she navigated uncertainty with a clinician, Lara discussed that the inconsistent approach of the clinician made her feel both uncertain and frustrated, prompting her to stop seeing an exercise physiologist:

… he'd be “Hey, we're going to do this.” And then the next session, it was almost like he had forgotten about what he said… he was like, “oh, yeah, that that's really, really tight through there like, gosh, that's noticeably tight.” And then it wasn't mentioned again, because he had forgotten about it. But if that's affecting things why is this not something we are doing constantly? Why is this not being prioritised? It kind of felt like trial and error because he would just like find something randomly and then be like, “oh,” and then forget about it… So, I'm now not seeing him because … it was just irritating me too much and then affecting my mental state after I saw him because I'd be so frustrated… Lara, aged 21 years, 3 years since the first LBP episode

When asked about what could have helped her to navigate uncertainty in this context, Lara seemed to value openness, acknowledgement of uncertainty, consistency, and plans. This sentiment was common in the interviews:

Being a bit more honest, and upfront and consistent, saying at the start “this isn't a straightforward process, we're just going to be honest with you.” Because I guess clinically, there is a lot of uncertainty around low back pain anyway, so it is very hard for them to diagnose but if they're honest with that, I think for a lot of reasonable people, and maybe it's different when someone's in, like a whole world of pain. But for me, because it was not like terrible pain, that like if someone's just upfront and they're, “look like this is how it is with back pain, what we know we can do is this, and we're just going to see, and then we'll check in”… almost pre-empting discussions, starting off by explaining that and yeah, just a bit more consistency, seeing that there is like a plan in place and like knowing that. Lara, aged 21 years, 3 years since the first LBP episode

Although Lara makes some suggestions about what might be helpful, she also acknowledges complexities surrounding navigating uncertainty—it might be different for different people, depending on their circumstances. Reflecting about her own LBP experience, Lara placed value on honesty about uncertainties and making and returning to plans, as opposed to the certainty of a diagnosis.

3.4. Theme 4: Am I being taken seriously?

Finally, participants also discussed experiencing uncertainty about being taken seriously. This type of uncertainty appeared very relational—not having pain seen by others and not being heard or believed produced uncertainty and negative emotions. For Emma, this meant she questioned her ability to clearly articulate and negotiate important aspects of her care:

Sometimes I felt uncertain whether I'm actually being taken seriously… because sometimes I feel like unless your pain is visible, people sometimes have a hard time relating to it or understanding it or believing it. So, I feel sometimes like I have to work extra hard for people to take me seriously. So often I'll leave appointments and then the more I think about them later: Did I tell them enough today? Did they ask the right questions? Did I convince them enough that they're going to help me?… [it] can actually have a very negative effect afterwards because then you start going over it in your mind and questioning yourself, and then you just sort of leave a medical appointment almost feeling worse than when I went in. Emma, aged 34 years, 12 years since the first LBP episode

Here, Emma's uncertainties seem to amplify after the encounter, emphasising that it is important that clinicians attend to them skilfully during their appointments with patients. Helen had a similar experience—after seeing a clinician who focused on body parts other than the lower back and was seemingly dismissive of LBP as the primary complaint that prompted her to seek care, her uncertainties were magnified. Helen second guessed the legitimacy of her own pain experience and avoided organising follow-up appointments with the clinician:

He [the doctor] sent me to the physio again for my back and the person just didn't seem to understand what my problem was… I'm there for my back and I mean, maybe I didn't get it, but… the physio was quite interested in talking about my knees and my hips and my wrists and all the rest of it, so I was very uncertain about what we were actually treating and what we were actually going to do because I didn't see the relation then… After that appointment I never, I didn't go back because I was just, I was not sure that they knew what my condition was so. So, I just, yeah, that left me very uncertain. Like, is it, is it not…? Am I imagining the pain? Helen, aged 55 years, 30 years since the first LBP episode

Other participants spoke about feeling uncertain about whether they were being taken seriously when clinicians argued that the pain was due to stress or mental health aspects:

I knew that I wasn't imagining the stuff that was going on or the amount of pain I was in with my back… Ask me more questions if you need to know about my symptoms. I don't care if you ask me them six times back to front… do whatever you need to do to understand that this is real for me. Listen to your patient. That's probably the biggest thing—put bias aside. I feel like there was an assumption there made on me, which I'm not taking personally, I just think it's problematic. And it stops access [to healthcare]. It makes access [to healthcare] terrible and it makes the experience hard. Carla, aged 44 years, 15 years since the first LBP episode

For Carla and others, the uncertainty surrounding not being taken seriously turned the experience of seeking care difficult and emotionally draining. Some participants discussed scenarios where neither their pain nor emotions were taken seriously by clinicians:

He [the doctor] sort of made some comment like “you are trying to affect, no good deed goes unpunished.” And I'm just looking at him going “I'm in tears because I am in pain!”… He [the doctor] was horrid. Everybody does take me incredibly seriously, except this last time. Simone, aged 61 years, 2.5 years since the first LBP episode

Overall, these excerpts highlight participants' experiences of uncertainty related to how clinicians perceived the severity and location of their LBP, in contrast to their own experiences. The uncertainties surrounding not being taken seriously seemed to be related to trust, pointing to the importance of creating a health environment that makes people feel safe, respected, and trusted. This points to the importance of reflexivity for clinical practice—reflecting about how a patient might feel and the intended and unintended effects of questions and practices.

4. Discussion

Our findings suggest that individuals with LBP experience several uncertainties within the context of their LBP care. These encompass uncertainties about how their LBP will unfold over time and how this may affect their lives; what care might be available and when; clinicians' abilities and willingness to help; questions clinicians ask, how to explain symptoms and make sense of clinicians' messages; and whether they were being taken seriously. Our findings also suggest how these uncertainties might be better attended to by clinicians—by providing guidance on how to navigate LBP as opposed to simply giving certainty regarding what to expect over time. Avenues include approaching care as a partnership, making time to (actively) listen to and acknowledge patients' concerns, asking open-ended questions, being honest about uncertainty, creating and returning to plans, challenging assumptions, and remaining curious about one's context.

Many uncertainties were intertwined with, but not limited to, relational aspects of their interactions with clinicians such as communication (eg, how [lack of] diagnosis and prognosis are communicated, [lack of] active listening), not having “important” goals to discuss, pain not being seen by others, feeling unheard, and having the impression clinicians are not invested in providing care. Clinicians therefore may need to consider these relational aspects of care when navigating uncertainty with people who experience LBP, highlighting the importance of drawing from evidence bases such as qualitative research findings10,11,43,46 like those presented here. In light of our findings, simply communicating the latest evidence about the mismatch between pathology and symptoms4 (theme 1), using goal-oriented techniques19 (theme 3) or treatments supported by evidence from randomised controlled trials (eg, theme 3 [exercise]23) may not be enough to improve individuals' experiences of navigating uncertainty. In this discussion, we contribute to the LBP literature by providing insights into how uncertainties individuals with LBP experience may be better navigated by clinicians while attending to relational aspects, within the context of the broader LBP literature. Drawing from our findings, we argue that: (1) presenting clinical information alone is insufficient to help individuals with LBP navigate uncertainty, as uncertainties they experience are often broader than clinical aspects such as diagnosis and prognosis; and (2) clinicians may help individuals to navigate uncertainty by actively demonstrating their care, engaging in reflexivity, and watching for signs of uncertainty.

Our first theme suggests that certainties and uncertainties create further uncertainties about how patients' experiences may unfold over time. Participants reported experiencing uncertainty in scenarios that may be interpreted as “certain” by the clinician, such as receiving a diagnosis or being informed about the lack of clear associations between LBP symptoms and structural changes detected in MRI. Although seemingly related to biomedical aspects (ie, diagnosis and cause of LBP), the uncertainty that resulted from both certainty and uncertainty was related to broader aspects of life and how these may change over time, such as one's ability to maintain independence, handle emotions, and prevent future episodes. These findings are aligned with those from a meta-analysis of experimental studies, indicating that patients' concerns are not reduced by diagnostic testing.37 Considering our findings, diagnostic testing may insufficiently address patients' concerns and uncertainties if not accompanied by discussions about how to manage symptoms, emotions (eg, frustration and hopelessness), or access healthcare services. The latter seems to be particularly important for those who live in remote areas or have mental health challenges. Within this context, collaboration between clinicians and patients is likely important in mitigating effects of biomedical uncertainty30 and human uncertainties more broadly.9

Katz27 argues that being emotionally attentive and honest in the face of uncertainty may be more productive than communicating half-truths or remaining emotionally disengaged. In alignment with Katz's argument, our second theme underlines the importance of clinicians actively demonstrating their willingness to support patients facing uncertainty through collaboration, active listening, and challenging their own assumptions. This concurs with our findings suggesting that it is important to have open and honest discussions about the limitations of treatments and services, bearing in mind patients' particular contexts (eg, ability to pay for multiple visits and need for communication in-between appointments) and those of the available healthcare services (eg, waiting times for follow-up appointments). This might be particularly relevant when patients do not improve despite engaging in the proposed treatments and/or are unable to access health care because of system constraints.25 Within this context, clinicians may need to offer more than the reassurance guidelines advocate.34,35 Telling patients that there is no serious pathology in their spine or that it is safe to move may not be enough, particularly for those who experience persistent symptoms. Likewise, healthcare systems may need to consider both service and policy changes that may reduce the burden of uncertainty on patients—eg, offering training, support, and funding to enable clinicians to take the time to address patients' uncertainties; offering alternative care pathways for those on waiting lists12; funding health care for those who are under low income thresholds and/or belong to disadvantaged groups12; and developing policies that prompt clinicians to embrace the complexity and uncertainty inherent to patient care and actively engage patients to explore alternatives to navigating LBP.12,28

Research shows that positive therapeutic alliance between patients and clinicians is associated with improvements in LBP17 and musculoskeletal pain mor