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Narratives of life with long-term low back pain: A follow up interview study

  • Sanne Angel EMAIL logo , Lone Donbæk Jensen , Thomas Maribo , Birgitte Krøis Gonge and Niels Buus
Published/Copyright: October 1, 2017
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Scandinavian Journal of Pain
From the journal Scandinavian Journal of Pain Volume 17 Issue 1

Abstract

Background

Long-term low back pain is associated with multiple challenges to a person’s identity and social position. Despite efforts to understand the challenges of low back pain, recovery remains a major problem both personally and socially. This indicate a need for a different approach. Although personal stories have been used to extend knowledge of issues that relate to low back pain, they also make i possible to learn about how people understand themselves and their lives. As such, analysis of narrative: may provide further insights into people’s coping processes and novel insights about how best to support them.

Objective

The aim of the study was to analyse personal recovery narratives to gain an insight into how people understand themselves and cope with long-term low back pain 2-4 years after a bio-psycho-social counselling intervention.

Study design

Using a Ricoeurian phenomenological-hermeneutic perspective, qualitative in-depth interviews were undertaken and interpreted to explore people’s narratives of long-term recovery after an intervention.

Methods

We interviewed 25 informants 2-4 years after participating in a counselling intervention for low back pain where they were advised to exercise regularly; they were part of the intervention group in a randomised clinical trial. The sample included both informants who had benefited from the intervention and some who had not. Analysis was informed by Ricoeur’s interpretation theory.

Findings

The informants’ stories revealed two main narratives regarding themselves and their lives: (1) getting on with life without pain, (2) life with continual pain and variations of the emplotment. The first included Recovering from low back pain and returning to prior lifestyle if possible, Keeping low back pain in check by strict regimes, or Developing strategies when low back pain recurs. The second related to Finding a way to a functioning everyday life with continual pain while narratives of being stuck with low back pain and finding no way out highlight the significance of being able to configure a narrative that can support an understanding of the pain and how to deal with it to have a functioning life. Furthermore, the health professional has a significant role to play in the configuration of narratives.

Conclusions

The challenge for people with low back pain was to find ways of getting on with life, and this included their ability to configure an understandable narrative that opened up for a future, implying new understandings of the self and how life could be lived. When healthcare professionals offered personal and realistic suggestions to the informants’ configuration of narratives of life with low back pain, they supported a positive change in the informants’ ways of coping with their situation.

Implications

Health professionals can play an important role in low back pain sufferers’ configuration of meaningful narratives that help in coping with pain and learning about the relationship between pain and everyday life.

Keywords: Chronic disease; Illness behaviour; Intervention studies; Low back pain; Narration; Rehabilitation

1 Introduction

Fortunately, low back pain may resolve spontaneously. How-ever, in some cases, low back pain persists despite lay and professional interventions, and causes physical as well as psychosocial impairment. It may become a chronic condition despite treatment and prevention efforts by the patient, the healthcare system and sometimes the labour market [1]. Research in this area unfolds heartrending stories of suffering, loss, and isolation [1,2,3,4].

Froud et al. [5] wrote a review of 49 qualitative papers on the impact of low back pain on people’s lives where some live with the pain, some manage, and of those who withdraw socially some find their way over time. From these and other studies, we know that people have major challenges related to low back pain in their family and social life [6,7,8,9,10], as well as employment [6,11]. The inability to manage everyday tasks generates psychosocial distress with respect to social roles, relationships, independence, self-esteem and personal finances [6,7,8,9,10]. In addition, Corbett et al. [12] found that low back pain sufferers typically balance emotionally between hope and despair. Despair may lead to a feeling of hopelessness where the sufferer experiences that life is not worth living when pain totally dominates [12].

The unpredictable nature of pain is a challenge in itself. Crowe et al. [13] showed that unpredictability was the most pronounced factor to influence lifestyle and self-image. It made patients constantly aware of their body and ready to make adjustments to avoid further pain. Dealing with low back pain where symptoms often vary considerably over time made this especially challenging. Crowe et al. [13] emphasised that some patients allow bodily symptoms to take control of their lives. The active lives of patients were discontinued because of an understanding of pain as a sign to stop activities the patients believed were causing the pain [12]. A study by Griffiths et al. [14] indicated that low back pain could totally dominate one’s life, but after a while it could also disappear or stop having the same dominating role. Knowledge that patients with low back pain struggle to maintain control in their lives, employment, family roles and social activities despite unpredictable pain indicates that living with low back pain is very complex [5].

A meta-ethnographic synthesis by Troy et al. [15] showed that coming to terms with low back pain called for the informants’ ability to “move forward alongside pain”. “Realising that there is no cure”, the informants integrated the painful body and redefined a “normal I” that legitimised connection to people and community [15]. However, Larsen et al. [10] found that most reject the common message to patients with continual low back pain that it may be necessary to learn to live with the condition. The findings of Troy et al. [15] and Larsen et al. [10] regarding the need to learn to live with low back pain underlines the value of narratives of life with low back pain.

The narratives of those who have low back pain are recognised as an important source of knowledge. Narratives are primarily ascertained by encouraging personal stories during interviews. Among good examples are Corbett et al. [12] which shows the role of narrative as searching for a means of finding a way out of despair and giving voice to worries. They found that narration was the means of finding oneself as a person, no matter the course of the pain [12]. From a sociological perspective, Ong et al. [16] showed how people used narratives in their struggle for moral legitimisation. This included stories of being trustworthy and fulfilling social and economic obligations despite pain. Thus, narratives used as data reveal thematic characteristics of low back pain that provide understanding of the patient’s situation. However, exploring these characteristics may involve a theoretical-methodological distance that does not capture the meaning-creating ability of the narratives if the analysis does connect characteristics into a coherent story. This is supported by the fact that personal stories can be a source of profound insight into the illness narrative as seen in the work of Blair [3]. Still, analysis of different narratives can provide further knowledge of the different illness narrative of life with low back pain. This can be achieved by combining the revealed meanings and variations into master narratives. These master-narratives are valuable as they make coherent characteristics that otherwise would appear fragmented. Therefore, our focus in this paper is on different meta-narratives of how patients deal with long-term low back pain after receiving an intervention.

1.1 Theoretical perspective

Ricoeur [17] is known for his thorough documentation of the relationship between people’s existence and the narratives they configure. He argues that people understand their lives and themselves through their narratives. This happens when new events are narrated and meaning is achieved by being related to prior events. Furthermore, narrative configuration creates meaning of the events and experiences and provide the basis for living a future life. The search for understanding means that a person tells and retells a narrative until its configuration is satisfying. Satisfaction lies in coherence between the past, present and future that makes the story understandable. Also, the story must open up for the good life, building on Ricoeur’s [18] readings of the work of Aristotle on the good life. Ricoeur does not, to our knowledge, elaborate on this point further. Thus, the pending stories that people have to tell [19] come from lack of understanding of and satisfaction with their present situation and the future it may lead to.

Personal narratives express people’s interpretation of what has happened. The significance of interpretation is derived from the fact that previous events are the starting point for subsequent actions and experiences, and thereby one’s future life.Thus, Ricoeur [19,20] relate two immediate separate events: that life is lived and stories are narrated. Serving both as documentation of the situation from the narrator’s perspective as well as how the situation is understood, the existential foundation of narratives is evident. Thus, personal narratives have a central role to play in the life-world and are a fruitful way of gaining insight into the lives of people with low back pain.

The aim of the study was to gain insight from personal recovery narratives into how people understand themselves and cope 2-4 years after an extensive bio-psycho-social counselling intervention.

2 Methods

This interview follow-up study employs a Ricoeurian [21] phenomenological-hermeneutic approach to informants’ narratives about living with low back pain.

2.1 Study context and sample

This study was a qualitative follow up of a randomised controlled trial design that tested the effects of a secondary prevention counselling intervention. The results of the RCT indicated that the counselling intervention had a significant, positive effect on the participants’ pain, physical functioning and self-reported sick leave after three months [22]. In studying the intervention, we analysed clinical interviews that were routinely performed as part of the intervention. This disclosed the difficulties some informants had in adhering to their own plans for exercising six weeks into the intervention [23].

In this qualitative follow up of the RCT participants, one interview was made with 25 purposefully sampled informants [24] from the intervention arm of the trial. Of this sample, 15 informants had reported benefits from the intervention, and 10 informants had reported no benefits 2-4 years earlier [25]. We have previously reported on an interactionist analysis of these interviews, which indicated that participation in the counselling intervention created a sense of certainty and potential control over the disease and had legitimised the informants’ sick role at work and at home [25]. The present paper presents a secondary analysis [26] that explores the existential process of getting on with life with low back pain that was so severe that they were referred for specialist treatment. This important topic was not extensively explored in the interactionist analysis.

2.2 Data collection

Data was collected by two experienced researchers (S.A. & N.B.). To facilitate rich accounts of the informants’ experiences, the interview guide included an open narrative part and a structured part. In the first part, informants were asked to narrate experiences of their life with low back pain using questions such as: “Please describe how your back pain started?”, “What happened then?”, “How are you coping now?”, “What do you think about the future?” These were supplemented with questions about what the informant had done in relation to the pain and the current situation at the time of the interview. The second part of the interview was designed to elicit more specific responses regarding the informants’ experiences of the intervention. Interviews were audio-recorded and transcribed verbatim.

2.3 Data analysis

We used Ricoeur’s [21] theory of three-step interpretation: naive interpretation, structural analysis and critical interpretation.

In the naive interpretation, the transcript of each informant’s narrative was read and narratives were subsequently interpreted both individually and as a whole. The overall interpretation of the naive readings revealed that although some participants experienced feeling stuck, life had moved on for others. These informants had created a tolerable balance between chronic pain and expectations of their body’s capacity.

In the structural analysis, we remained in the suspense of the text ([27], p. 113), reading sentence by sentence and moving from what the text said and what the text talks about. The reciprocity of understanding and explaining meant that the meaning was released by the explanation ([27], p. 167). The hermeneutical process involved moving between the parts and the whole text. This revealed great differences between the onset of low back pain and how informants subsequently coped with the pain. Tables were used to keep an overview of similarities and differences between the stories. The first author organised the narratives to highlight the storyline of the onset of the back issue, prior history and the consequences of low back pain. This included issues such as pain, physical activity, job situation and overall experience of the life-situation. Rigour in the analysis was created by constantly consulting the data and going back and forth between analysis and data. Two of the authors (S.A. & N.B.) developed the interpretation through discussion using tables and maps (Table 1).

In the critical analysis, we sought in a hermeneutical arch, departing from the naïve interpretation of the text over an explanation of the structure of the text, to reach the most significant interpretation among the various interpretations of themes and patterns that emerged through comparison and contrast. This enabled us to identify the master narratives.

3 Findings

Analysis identified two master narratives about low back pain issues: (1) getting on with life without pain, and (2) life with continual pain and variations of the emplotment. These included the difference between getting on with or without pain and being stuck with low back pain. Furthermore, a person’s illness narrative over the years may entail more than one of the master narratives.

3.1 Narratives of getting on with life without pain

Sometimes low back pain was interpreted as a potential risk that influenced the informant’s understanding of possibilities and actions. Such an understanding was typically caused by recurring periods of pain where the informant struggled to become pain-free. Adjustments were made through increased exercise, decreased physical demands or periodic use of medication to keep the pain at bay. This adjustment to new routines in their daily life was often made more by necessity than by choice, in contrast to cases in which the informant found passion in a physical activity. These two situations show the difference between a person who “had to do” compared to a person who “wanted to do”. The first approach led to some burdensome regimes. The second approach implied a lifestyle in accordance with the person’s identity. This impacted on the experience of satisfaction in everyday life and also on the extent to which low back pain was considered a problem.

3.1.1 Recovering from low back pain and returning to prior lifestyle

The experience of recovery could mean the total disappearance of low back pain and return to everyday life as it was before the pain. This was the informant’s goal and the purpose of the professional intervention. After a period of doing the recommended exercises, some informants could quit these recommendations and resume their former lifestyle, maybe with minor restrictions or changes in habits. Minor adjustments could cause informants to feel in control despite occasional pain. These informants often considered the problem to be resolved. They interpreted it as a condition that could be resolved with minor changes based on new knowledge about the physiology and functionality of their back.

3.1.2 Keeping the low back pain down by strict regimes

Some informants experienced an increase in pain if they skipped exercises even for a few days. Due to fear of pain, these informants were very anxious to maintain a rhythm that ensured that they were able to exercise. It was a challenge to incorporate this routine into everyday life, not least because the demands of physical exercise were yet another task to be accomplished in a busy day.

Table 1

The participants’ situation 2-4 years after the intervention.

History Job situation Exercise Pain Life situation
Informant A has changed job and made no exercising only pain once in a while satisfied with the situation - getting on
 old history - new serious event everyday life work with life
Informant B has changed job and made no exercising pain, despite strong unsatisfied with the situation - getting
 new event everyday life work medication everyday on with life - seeks help again
Informant C has changed job several times no exercising gets pain in specific positions satisfied with the situation - getting on
 long-term hard work straining and made everyday life work cannot control legs, e.g. to with life
 the back by exercising until he retired dance
Informant D has no longer a job exercising despite pain unsatisfied with the situation - not
 new event worse pain getting on with life, find pensioning could be a solution
Informant E light duty job and has made exercising pain once in a while satisfied with the situation - getting on
 new event everyday life work with life
Informant F same job exercising pain unsatisfied with the situation - not
 long-term hard work straining getting on with life
 the back
Informant G has changed routines at the job exercising will always have low back pain satisfied with the situation - getting on
 old histories - new serious event and made everyday life work and must adjust life to that with life
Informant H has a job and everyday life exercising no pain satisfied with the situation - getting on
 old history - new serious event works with life
Informant I work despite low back issues exercising tingling in leg has accepted the unsatisfying situation
 sneaking pain - getting on with life
 developed over time
InformantJ has changed to a light duty job exercising pain despite medication satisfied with the situation - getting on
 old history - new event and has a smaller house and made everyday life work for neurological pain with life
Informant K Reduced working hour exercising no pain must find another solution, which does
 new event (flexjob) making everyday life work, but feel bad about being a burden not impose on the goodwill of others
Informant L can with the new conviction exercising no pain satisfied with the situation - getting on
 old history, but the bad back make life work with life
 suddenly takes up many
 resources
Informant M back to everyday life taking the exercising strategies to manage pain early satisfied with the situation - getting on
 back issues for a couple of years back into consideration a little more often and strategies to manage pain early with life
Information N continues in light duty job and exercising has become good at reacting satisfied with the situation - getting on
 new event has become good at reacting fast to pain fast to initial pain with life
Informant O minds his job but takes care of exercising no pain when taking care of satisfied with the situation - getting on
 old history - new event his/her back not provoking pain with life
Informant P back at work exercise is reduced pain unsatisfied with the situation - seeks
 sneaking pain new low back pain help again
 developed over time
Informant Q back at work, but takes more exercising no pain when taking care of satisfied with the situation - getting on
 back pain for several years care not provoking pain with life
 culminated
Informant R back at work exercising keep pain away by exercising satisfied with the situation - getting on
 sneaking pain with life
 developed over time
Informant S same job with less strain exercising no pain due to less strain satisfied with the situation - getting on
 came sneaking after many years with life
 of work straining the back
Informant T same job with aids and exercising more or has pain in some periods, but satisfied with the situation - getting on
 back pain for years due to many adjusted work positions less no pain when getting the with life
 years of back straining work exercise done
Informant U lost the job exercising pain unsatisfied with the situation - not
 makes too heavy lifts carefully, because exercise made the pain worse getting on with life, consider if pensioning could be a solution
Informant V same job exercising no pain, when not making too satisfied with the situation - getting on
 pain for a longer period heavy lifts with life
Informant W same job and a exercising no pain satisfied with the situation - getting on
 back problems for many years well-functioning everyday life with life - did that before the
 were kept at bay intervention too
Informant X back at work stopped exercising no pain, when exercising satisfied with the situation - getting on
 pain after long-term bed rest again, new event, continued work, seeked help again, now exercising with life
Informant Y same job exercising no pain satisfied with the situation - getting on
 sneaking pain developed over with life
 time

A mother of smaller children managed to exercise by balancing mothering and domestic tasks. This informant (X) explained the significance of commitment to attending a group at a convenient time:

“I have found a good rhythm during the winter, but unfortunately not during the summer. During the winter, I take water aerobics classes at 8.30 p.m. which is great because I can finish up at home and leave at 8.15 and come home at 10, and this actually works fine for me, because I know I’m going and it’s late so I have time for all the stuff I need to do”.

The fact that the informant’s pain returned after taking a break from exercise highlights the importance of practicable arrangements. It could be a constant pressure on the informant to find ways to make sure that exercise got done.

To be free of pain, it could be necessary to combine exercises with a workload reduction both at work and at home. Some informants needed detailed instructions of how to do every daily task. Informant J was not able to manage daily living before she joined a programme that taught her how to perform simple daily tasks like: “how to go shopping and how to push the trolley and when I work in the kitchen, how to avoid twisting my lower back”. Expressing her gratitude, she ascribed her ability to manage her life to the benefits she received from the programme. Knowing about bodily limitations and reducing physical demands became a strategy that meant that the informants felt that they knew what to do if they experienced pain. In that way, they could push the limits for what would provoke pain as they knew how to get rid of it again.

3.1.3 Developing strategies when low back pain recurs

If low back pain became a recurrent problem, informants could develop strategies that involved medication, increased exercise or reduction of physical demands. Informant X had suffered from recurrent low back pain until he realised the significance of maintaining regular exercise:

“Since I was young, I’ve had spells of back pain. I never knew that exercise was so important for the back.”

Recurrent pain made informant X exercise, and he learned that he had underestimated the benefit of physical activity to keep him strong enough to prevent pain. The fact that regular exercise could keep his pain away ensured that he continued exercising after the pain stopped. Like many others, he had stopped exercising after a period without pain, and then the pain returned.

Maintaining exercise was more likely due to insecurity over whether the low back pain would return if they did not exercise, and they were not willing to put this to the test. Informant H had experienced that the low back pain she had for years had escalated. She said that this awful experience helped to ensure that she did not miss any of her two weekly exercise sessions:

“... the two weeks where it hurt like hell. I must say that it’s still very clear to me. It really, really hurt and I would hate to get back to that. So, I’d say that this was a motivating factor in itself, because it was horrible.” (Informant H).

Thus, fear of pain was considered a strong motivator and could be interpreted as a constant risk. Having had successful surgery two times already, an informant (O) concluded that this might not be the outcome if there was a third time. He explained that this led to insecurity that affected his overall confidence: “If you could guarantee that I wouldn’t get a herniated disc again and that I’m not going to get any worse than I am now, I would be rather satisfied” (Informant O). The lack of guarantee created a barrier to experiencing full satisfaction with life. Thus, informant O experienced himself as a person with low back pain and not just someone that exercised regularly. However, insecurity also meant that exercising was incorporated into everyday routines. The positive effect of this was that the informants experienced being stronger and in better shape than ever before. This resulted in a more positive experience of life than before the onset of low back pain.

For some informants, exercising became part of new routines that changed their priorities and led to a new lifestyle that improved their health. For informant M, the experience of running surprisingly developed from something that reduced his pain to becoming a passion. He wanted to run because of the joy it gave him: “I normally run 10-12 km every Monday, Wednesday and Saturday... I’m both psychologically and physiologically dependent.” (Informant M). Being a runner and part of a running club had opened a whole new world for him. Furthermore, he was no longer aware of his low back pain: he exercised for the sake of exercise. This underlines the difference between struggling to abide by a necessary, but unwanted regime, on the one hand, and the experience of new ways of living that contributed to a satisfying everyday life, on the other hand.

3.2 Narratives of life with continual pain

Pain did not necessarily dominate the informants’ lives. Such an understanding of pain resulted from a re-interpretation of resignation after unsuccessful interventions, lowered expectations to physical capacity and life and reduced demands. The informants had given up on the possibility that the pain would stop, but not the hope that it might be reduced. However, this also meant that pain could be kept at a level where the informant’s focus could go beyond pain. Thus, pain was seen as a manageable condition.

3.2.1 Finding a way to a functioning everyday life with continual pain

When pain continued to be a substantial part of everyday life, new ways of living had to be found. Some informants managed to get on with life by not letting the pain dominate everything. These informants had developed coping strategies like using medication, making space for relaxation and avoiding specific activities. The struggle to manage could bring with it new routines, a different job, or early retirement. Risking losing his ability to maintain his livelihood, informant C explained how he kept things going until he was able to retire.

“Well, I was around 55. The job was bad. And then you get scared. “Shit, I can’t manage in the long run”. In my position and the way in which I was employed and my age. . . It’s like playing the lottery [finding a job I can manage]. It went on for five years.”

This informant considered himself lucky that he had avoided sick leave by shifting to a job that he could manage. This prolonged transition process of struggling to manage work and everyday life with low back pain involved limitations and the loss of valued activities. In his particular case, dancing had meant a lot:

“I have no strength and many of the things I could do before I can’t do today. I can’t dance either, that’s over. I can’t make my legs obey” (Informant C).

Getting on with life despite continual pain necessitated a balance where limitations did not overshadow everyday life. This meant that some accepted pain if they prioritised participating in physically challenging activities. Some informants ascribed this ability to their personality. Thus, informant I had stopped taking precautions, even though she knew she would suffer as a result later:

“I am the kind of person who believes that “nothing is going to limit me”. Maybe I would think differently if my back had been very painful/caused a lot of pain” (Informant I).

This informant was confident that she was familiar with her pattern of pain and did not worry about it getting worse. Thus, pain could be dealt with if the informant felt confident that an increase in pain was not an indication of something worse to come, indicating that the informant believed that the pain would decrease again.

Despite the informants’ ability to maintain an everyday life, living with pain challenged their endurance. When a doctor showed interest, informant B who had found a rhythm despite pain felt encouraged to search for help again:

“I was in constant pain and I’m in pain now. I am always in pain. My old doctor retired and my new doctor will try to send me through the treatment system again because I really want to get off these pills.”

This informant had lived with pain for years, but she was ready to try again. Being open for new possibilities meant that her back issue could be given full attention in a new attempt to get rid of the pain. It could also be a matter of having the energy and money to give it another try.

3.2.2 Being stuck with low back pain and finding no way out

If the pain persisted, it had consequences for the life that could be lived. If the initial expectation that treatment could make the pain go away had proven wrong and the pain continued, frustration increased. This could be experienced as being in a vacuum of uncertainty. For informant D who had really engaged in the intervention, the pain got even worse. She said in despair:

“Everybody came to the same conclusion: You just have to exercise. And I haven’t done anything but exercise... and I’ve followed all their plans. And yes, it does help [the back]... but it hasn’t helped [the leg]. Instead, it has slowly become worse” (Informant D).

From being hopeful and having positive expectations of the professionals’ recommendations, lack of improvement created disappointment and even anger as shown in the above quotation. The narrative revealed discrepancy between the informant’s experiences and expectations and the professionals’ recommendations. The understanding had been that if she did as recommended, she would have a future without pain. If these attempts proved useless in relation to basic functioning in everyday life, the informant could lose confidence in professionals.

When consulting professionals, it was important that their recommendations reflected an understanding of the informant’s situation. Otherwise, the informant did not feel met and understood. Not aligning with an understanding of the past, these recommendations made the informant struggle to make sense of the recommendations of the present. This hindered expectations that recommendations would improve the low back pain condition and lead to a desired future. For example, informant U was offered a new education through the social security system which involved her sitting in a classroom, despite her back problems when sitting which was experienced as a rejection of the informant’s perspective. The informant felt that the professionals did not her acknowledge the problem, and this created conflict. Informant U explained that these new demands were more than she could deal with: “I needed safety; I can’t manage to learn a bunch of new things while I’m having back pain”. Having to deal with pain was a major issue that decreased the sufferer’s capacity. The fact that professionals did not always take that into account made early retirement seem the only solution for some (Informants D & U). External demands would then stop and the informant would be able to take all precautions, which might lead to a tolerable life. In that way, professionals and their recommendations could become part of the problem and not the solution.

4 Discussion

The narratives outlined above showed that individuals in the recovery process tried to reconcile themselves with things over which they had no influence. This was evident in Recovering from low back pain and returning to prior lifestyle if possible, Keeping the low back pain down by strict regimes, Developing strategies when low back pain recurs, and Finding a way to a functioning everyday life with continual pain. However, narratives of Being stuck with low back pain and finding no way out indicate that facing limitations was a frustrating and challenging process for those who were unwilling to give up life as it used to be. This meant that the informants did not assent to changes until it was clear that they could not be avoided; sometimes, changes were first initiated when pain recurred. In the narratives that described satisfying lives, individuals had more or less come to terms with the limitations caused by low back pain.

The low back pain sufferers’ narratives indicated that resentment about having low back pain was a driving force in attempting to resolve the pain issue. If low back pain could not be cured, a successful outcome could be achieved if the person was able to push pain issues into the background of his/her life and not be dominated by the pain. As such, although acceptance is central to a satisfying life, resistance and non-acceptance seemed to hold the potential to improvements. Even if being cured meant being free of pain, the risk of the pain returning was a driving force in maintaining the routines that support back health. Thus, resentment of being a patient with low back pain engaged the person in taking precautions whereas acceptance could lead to passivity/inaction that would worsen the physical situation and thereby the low back pain.

Narratives as ways of creating meaning have been ascribed many functions in relation to low back pain like giving voice to worries, outlining identity [12] and moral legitimisation [16]. With a Ricoeurian [17] approach, we focused on the life-world of the person. In this existential perspective, we found that narratives of not letting pain get in the way of life made sense. Furthermore, narratives of life with low back pain show how life could be lived. This involved (1) reducing outer demands to the body and/or (2) increasing bodily strength, and/or (3) decreasing expectations of physical activity and one’s possibilities in life. Lowering expectation was beneficial if limitation was a fact, making it possible for some informants to endure physical discomfort and pain. Satisfaction was achieved if functioning living was achieved. Often, this involved performing less physically demanding tasks at work and at home. Still, patients with low back pain lost valued activities and capacities, which were especially difficult if a new passion had not been found.

When the informants were unable to deal with pain and were therefore unable to live satisfying everyday lives due to the pain, their narratives described them feeling stuck. These narratives included accounts of professionals having disagreed with the informants’ lay explanations. This happened if professionals and informants did not reach a consensus. In these situations, the informants experienced the professionals as having rejected their story. This became an obstacle to reaching consensus about a narrative as a basis for cooperation where professionals’ recommendations could seem in appropriate in relation to recovery. Disagreement with professionals about the narrative configuration of the situation left the narrative fragmented in line with what Frank [28] characterised as a chaos narrative. These had an existential dimension, because the missing coherence in the narrative configuration meant that it could not serve as the basis for the person’s current actions and future prospects in line with the theory of Ricoeur [17,19,20]. As such, the prospect of a tolerable future could not be maintained; the informant had to lower his/her expectations of the future, and existence was experienced as uncertain, leading to increased vulnerability. This highlighted an additional aspect of the importance of others’ acceptance in the informant’s attempt to legitimate life and pain as described by Larsen et al. [10]. The frustration and resentment experienced when others’ perspectives overruled the personal narrative resulted in a negative impact on the individual’s integrity as a conflicting narrative created an obstacle to the development of a meaningful personal narrative. According to Ricoeur [20], this trouble in re-configuring narratives hinders the person in making life more understandable and bearable. Narratives of being stuck were intrinsically linked in this study to professionals’ stance and dispositions. Pain made the informants dependent on professional help, and therefore they struggled for consensus. As shown by Angel et al. [29], consensus is needed for cooperation towards the same goal, namely the patient’s, to establish a common starting point for developing the patient’s future life. Thus, an important part of the health professionals’ job is to add to the informant’s perspective and support the low back pain sufferer’s struggle to configure a meaningful narrative.

The strength of the phenomenological-hermeneutic approach was that it revealed what it meant to the individual either to have or have had low back pain. Narratives of situations represent people’s understanding of their lives that constitutes the basis for their future life. A limitation of our study was that the informants’ descriptions focused on the overall interpretation of their lives as they appeared significant within the interview context. This meant that issues that had not caused any trouble were not necessarily touched upon; e.g. the informants did not talk much about the meaning of support from family, colleagues and employers. A more structured interview guide could have disclosed this but would not have given the informants the opportunity to talk openly about core issues from their perspective to the same extent.

5 Conclusion

As a common and recurring health problem, the challenge for low back pain sufferers is to find a way of prevention and/or coping so that pain does not dominate their lives. This happened when recovering from low back pain and returning to prior lifestyle was possible, keeping low back pain down by strict regimes, developing strategies when low back pain recurs, or finding a way to a functioning everyday life with continual pain. However, some happened to be stuck with pain. Here, the configuration of personal narratives and health professionals’ engagement in the configuration was crucial for these individuals to have a meaningful life. The sufferer of low back pain needed professional recommendations and support plus assistance to incorporate these aspects into the personal narrative. To be supportive, sensitivity in relation to the individual sufferer’s perspective is needed, especially when the future unfortunately seems hard to change. Health professionals can play an important role in the low back pain sufferer’s configuration of a meaningful narrative that helps in coping with pain and highlights the relationship between pain and activity.

6 Implications

When patient suffering from long tern low back pain getting on with life implies a new understand of who they are and how life can be lived. This is achieved when a narrative of a well-functioning everyday life can be configured. In the process, new ways of dealing with everyday life are in cooperated. Health professionals can play an important role in the low back pain sufferer’s configuration of a meaningful narrative that helps in coping with pain and highlights the relationship between pain and activity. This demands that the health professional listen to the patient story in order to add adequate suggestions and possible solutions.

Highlights

  • Living with long-term low back pain implies not to allow the pain to dominate life.

  • Narration can support a well-functioning everyday life with low back pain.

  • Health professionals support to patients’ narratives are important.

  • Low back pain narratives can create new personal meaning and control.

  • Narratives show different ways of living with long-term low back pain.

Section for Nursing, Institute of Public Health, Aarhus University, Hoegh-Guldbergs Gade 6 A, 8000 Aarhus C, Denmark

  1. Contributions

    Sanne Angel: Design of qualitative study, analyses, and writing of article.

    Lone Donbæk Jensen: Design of randomised, controlled intervention trial, and intervention and data collection. Support to inclusion of participant in this study.

    Birgitte Krais Gonge: Data-collection in the randomised, controlled intervention trial.

    Thomas Maribo: intervention and data-collection. Support to inclusion of participant in this study.

    Niels Buus: Design of qualitative study, analyses, and writing of article.

    All authors contributed to and approved the final article. The article has not been published nor submitted for publication simultaneously elsewhere.

  2. Ethical issues: In line with Danish legislation, the study was notified to the Central Denmark Region Committee on Biomedical Research Ethics and the Danish Data Protection Agency (number 2006-41-6190). On the basis of written and oral information, informants consented to participate. The researchers complied with and ensured the confidentiality of the informants.

  3. Conflicts of interest: The authors have no conflicts of interest in relation to this study.

  4. Funding: This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Acknowledgement

We thank the informants for sharing their stories.

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Received: 2017-09-18
Accepted: 2017-09-21
Published Online: 2017-10-01
Published in Print: 2017-10-01

© 2017 Scandinavian Association for the Study of Pain

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https://doi.org/10.1016/j.sjpain.2017.09.018
Keywords for this article
Chronic disease; Illness behaviour; Intervention studies; Low back pain; Narration; Rehabilitation

Articles in the same Issue

  1. Observational study
  2. Perceived sleep deficit is a strong predictor of RLS in multisite pain – A population based study in middle aged females
  3. Clinical pain research
  4. Prospective, double blind, randomized, controlled trial comparing vapocoolant spray versus placebo spray in adults undergoing intravenous cannulation
  5. Clinical pain research
  6. The Functional Barometer — An analysis of a self-assessment questionnaire with ICF-coding regarding functional/activity limitations and quality of life due to pain — Differences in age gender and origin of pain
  7. Clinical pain research
  8. Clinical outcome following anterior arthrodesis in patients with presumed sacroiliac joint pain
  9. Observational study
  10. Chronic disruptive pain in emerging adults with and without chronic health conditions and the moderating role of psychiatric disorders: Evidence from a population-based cross-sectional survey in Canada
  11. Educational case report
  12. Management of patients with pain and severe side effects while on intrathecal morphine therapy: A case study
  13. Clinical pain research
  14. Behavioral inhibition, maladaptive pain cognitions, and function in patients with chronic pain
  15. Observational study
  16. Comparison of patients diagnosed with “complex pain” and “somatoform pain”
  17. Original experimental
  18. Patient perspectives on wait times and the impact on their life: A waiting room survey in a chronic pain clinic
  19. Topical review
  20. New evidence for a pain personality? A critical review of the last 120 years of pain and personality
  21. Clinical pain research
  22. A multi-facet pain survey of psychosocial complaints among patients with long-standing non-malignant pain
  23. Clinical pain research
  24. Pain patients’ experiences of validation and invalidation from physicians before and after multimodal pain rehabilitation: Associations with pain, negative affectivity, and treatment outcome
  25. Observational study
  26. Long-term treatment in chronic noncancer pain: Results of an observational study comparing opioid and nonopioid therapy
  27. Clinical pain research
  28. COMBAT study – Computer based assessment and treatment – A clinical trial evaluating impact of a computerized clinical decision support tool on pain in cancer patients
  29. Original experimental
  30. Quantitative sensory tests fairly reflect immediate effects of oxycodone in chronic low-back pain
  31. Editorial comment
  32. Spatial summation of pain and its meaning to patients
  33. Original experimental
  34. Effects of validating communication on recall during a pain-task in healthy participants
  35. Original experimental
  36. Comparison of spatial summation properties at different body sites
  37. Editorial comment
  38. Behavioural inhibition in the context of pain: Measurement and conceptual issues
  39. Clinical pain research
  40. A randomized study to evaluate the analgesic efficacy of a single dose of the TRPV1 antagonist mavatrep in patients with osteoarthritis
  41. Editorial comment
  42. Quantitative sensory tests (QST) are promising tests for clinical relevance of anti–nociceptive effects of new analgesic treatments
  43. Educational case report
  44. Pregabalin as adjunct in a multimodal pain therapy after traumatic foot amputation — A case report of a 4-year-old girl
  45. Editorial comment
  46. Severe side effects from intrathecal morphine for chronic pain after repeated failed spinal operations
  47. Editorial comment
  48. Opioids in chronic pain – Primum non nocere
  49. Editorial comment
  50. Finally a promising analgesic signal in a long-awaited new class of drugs: TRPV1 antagonist mavatrep in patients with osteoarthritis (OA)
  51. Observational study
  52. The relationship between chronic musculoskeletal pain, anxiety and mindfulness: Adjustments to the Fear-Avoidance Model of Chronic Pain
  53. Clinical pain research
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  57. Editorial comment
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  59. Observational study
  60. Identifying characteristics of the most severely impaired chronic pain patients treated at a specialized inpatient pain clinic
  61. Editorial comment
  62. The burden of central anticholinergic drugs increases pain and cognitive dysfunction. More knowledge about drug-interactions needed
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  66. Why can multimodal, multidisciplinary pain clinics not help all chronic pain patients?
  67. Topical review
  68. Individual variability in clinical effect and tolerability of opioid analgesics – Importance of drug interactions and pharmacogenetics
  69. Editorial comment
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  72. PhKv a toxin isolated from the spider venom induces antinociception by inhibition of cholinesterase activating cholinergic system
  73. Clinical pain research
  74. Lateral Cutaneous Nerve Entrapment Syndrome (LACNES): A previously unrecognized cause of intractable flank pain
  75. Editorial comment
  76. Towards a structured examination of contextual flexibility in persistent pain
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  78. Context sensitive regulation of pain and emotion: Development and initial validation of a scale for context insensitive avoidance
  79. Editorial comment
  80. Is the search for a “pain personality” of added value to the Fear-Avoidance-Model (FAM) of chronic pain?
  81. Editorial comment
  82. Importance for patients of feeling accepted and understood by physicians before and after multimodal pain rehabilitation
  83. Editorial comment
  84. A glimpse into a neglected population – Emerging adults
  85. Observational study
  86. Assessment and treatment at a pain clinic: A one-year follow-up of patients with chronic pain
  87. Clinical pain research
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  89. Clinical pain research
  90. Prevalence and characteristics of chronic pain: Experience of Niger
  91. Observational study
  92. The use of rapid onset fentanyl in children and young people for breakthrough cancer pain
  93. Original experimental
  94. Acid-induced experimental muscle pain and hyperalgesia with single and repeated infusion in human forearm
  95. Original experimental
  96. Swearing as a response to pain: A cross-cultural comparison of British and Japanese participants
  97. Clinical pain research
  98. The cognitive impact of chronic low back pain: Positive effect of multidisciplinary pain therapy
  99. Clinical pain research
  100. Central sensitization associated with low fetal hemoglobin levels in adults with sickle cell anemia
  101. Topical review
  102. Targeting cytokines for treatment of neuropathic pain
  103. Original experimental
  104. What constitutes back pain flare? A cross sectional survey of individuals with low back pain
  105. Original experimental
  106. Coping with pain in intimate situations: Applying the avoidance-endurance model to women with vulvovaginal pain
  107. Clinical pain research
  108. Chronic low back pain and the transdiagnostic process: How do cognitive and emotional dysregulations contribute to the intensity of risk factors and pain?
  109. Original experimental
  110. The impact of the Standard American Diet in rats: Effects on behavior, physiology and recovery from inflammatory injury
  111. Educational case report
  112. Erector spinae plane (ESP) block in the management of post thoracotomy pain syndrome: A case series
  113. Original experimental
  114. Hyperbaric oxygenation alleviates chronic constriction injury (CCI)-induced neuropathic pain and inhibits GABAergic neuron apoptosis in the spinal cord
  115. Observational study
  116. Predictors of chronic neuropathic pain after scoliosis surgery in children
  117. Clinical pain research
  118. Hospitalization due to acute exacerbation of chronic pain: An intervention study in a university hospital
  119. Clinical pain research
  120. A novel miniature, wireless neurostimulator in the management of chronic craniofacial pain: Preliminary results from a prospective pilot study
  121. Clinical pain research
  122. Implicit evaluations and physiological threat responses in people with persistent low back pain and fear of bending
  123. Original experimental
  124. Unpredictable pain timings lead to greater pain when people are highly intolerant of uncertainty
  125. Original experimental
  126. Initial validation of the exercise chronic pain acceptance questionnaire
  127. Clinical pain research
  128. Exploring patient experiences of a pain management centre: A qualitative study
  129. Clinical pain research
  130. Narratives of life with long-term low back pain: A follow up interview study
  131. Observational study
  132. Pain catastrophizing, perceived injustice, and pain intensity impair life satisfaction through differential patterns of physical and psychological disruption
  133. Clinical pain research
  134. Chronic pain disrupts ability to work by interfering with social function: A cross-sectional study
  135. Original experimental
  136. Evaluation of external vibratory stimulation as a treatment for chronic scrotal pain in adult men: A single center open label pilot study
  137. Observational study
  138. Impact of analgesics on executive function and memory in the Alzheimer’s Disease Neuroimaging Initiative Database
  139. Clinical pain research
  140. Visualization of painful inflammation in patients with pain after traumatic ankle sprain using [11C]-D-deprenyl PET/CT
  141. Original experimental
  142. Developing a model for measuring fear of pain in Norwegian samples: The Fear of Pain Questionnaire Norway
  143. Topical review
  144. Psychoneuroimmunological approach to gastrointestinal related pain
  145. Letter to the Editor
  146. Do we need an updated definition of pain?
  147. Narrative review
  148. Is acetaminophen safe in pregnancy?
  149. Book Review
  150. Physical Diagnosis of Pain
  151. Book Review
  152. Advances in Anesthesia
  153. Book Review
  154. Atlas of Pain Management Injection Techniques
  155. Book Review
  156. Sedation: A Guide to Patient Management
  157. Book Review
  158. Basics of Anesthesia
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