Illness perceptions in people with chronic and disabling non-specific neck pain seeking primary healthcare: a qualitative study | BMC Musculoskeletal Disorders

Participants

The interviews were conducted between November 2019 and December 2020. Saturation was reached with 20 participants. To obtain 20 participants, we had to invite 26 people with neck pain of which 25 people were willing to participate in the study. Four of them did not meet the inclusion criteria because their NDI score was < 15. One person withdrew after the inclusion procedure because participating was considered too burdensome. Twenty participants (15 women, 5 men) completed the questionnaires and the interview (mean (SD) age: 46.8 (12.1) years; median and Inter Quartile Range (Q25-Q75) duration of neck pain: 21.0 (6.0-117.0) months; mean (SD) pain intensity; 5.8 (1.8); median (Q25-Q75) NDI score; 20.0 (16.0-25.8); mean (SD) Neckpix score; 36.3 (27.8)). Please see Table 1 for the specific characteristics of each participant. At the time of the study, 18 participants were being treated by a physiotherapist. The other two participants had experienced physiotherapy treatment in the past. All participants consulted other healthcare professionals (e.g., general practitioners, specialists (orthopaedists, neurologists, rheumatologists, rehabilitation physicians, anaesthesiologists), psychologists, occupational therapists, osteopaths).

Interview characteristics

Eighteen interviews were conducted face to face (6 at home and 12 at the clinic) and 2 interviews were conducted via MS Teams. Each interview lasted between 35 and 50 min.

Perceptions of people with chronic disabling non-specific neck pain

A range of perceptions were present in the narratives of people with neck pain. Five themes demonstrating these perceptions emerged, being; 1) ‘How my neck pain journey began and why it continued’, 2) ‘Labelling my condition’, 3) ‘Impact: Multiple symptoms that require attention and action’, 4) ‘Coping with neck pain’ and 5) ‘Along the road: perceptions and experiences’. Each theme was subdivided in one or two subthemes to further specify the perceptions. The themes and subthemes are presented in Table 2 and explained below (see also Supplementary file 2 for an extended version of Table 2, including quotes).

Theme 1: how my neck pain journey began and why it continued

Perceptions regarding causal factors differed between people with a sudden (N = 11) and a gradual (N = 9) onset of their pain. The subtheme was labelled as ‘uni- versus multicausal contributing factors’. The majority of the participants who reported a sudden onset related the cause of their neck pain to a particular event, such as a car accident (P3, P5, P14, P16, P17, P18), a fall (P10, P13) or an epidural injection before delivery (P4). Two participants stated they ‘suddenly woke up with it’ (P8, P9).

Q1: 21 Years ago I had a serious car accident which resulted in a whiplash. Since then I have neck pain, sometimes on a daily basis, sometimes with pain-free periods in between. (P15)

When the episode of neck pain started gradually, the neck pain was attributed to a combination of work exposures, incorrect posture and/or the inability to relax the neck-shoulder region (P1, P2, P4, P6, P7, P9, P12, P19, P20), stress and a lack of relaxation (P1, P6, P7, P11, P12, P15, P20), aging or deconditioning (P1, P4, P9, P14, P20) and/or underlying anatomical disorders (e.g., arthrosis or scoliosis (P2, P4, P7, P19), surgery in another region (P2), or a hearing problem (P7)). For example,

Q2: I think it is an accumulation of different factors…not having a good time during my internship…, sitting behind my screen for a long time, an incorrect posture, a wrong chair and bed, overload… (P12) or

Q3: My age will be of influence. I am a bit older, I’ve been physically active and as a result I have these complaints. My parents are in a similar situation, my mother is diagnosed with a hernia… So yes, old age is coming, my body has had a lot to endure over the years. (P09) or

Q4: I think because of stress. The past 40 years were stressful to me and I think that this had consequences for my body. (P11)

All participants indicated that the persistence of their pain was the result of multiple factors (subtheme ‘maintaining factors’). Many participants indicated that ‘things accumulated’ (P1, P3, P4, P7, P9, P12, P15, P19, P20) (as reported in Q2) or they had ended up in a vicious circle (P2, P3, P10, P14). They stated that they felt trapped by a multifactorial condition, which was difficult to get out of. For example,

Q5: I’m not a good sleeper and in combination with my neck pain and headache….that in turn affects how rested I am, and influences my concentration, it’s a vicious circle…I’ve a busy job, it’s hard to dose my load, that’s really difficult. (P10)

Mechanical loading factors were reported as maintaining factors, such as incorrect posture, and engaging in certain physical activities, such as lifting or cycling. For example,

Q6: I look a lot at a computer screen and I think my posture is incorrect, I am also a fanatic cyclist and of course that is not good for your neck. (P10) or

Q7: I lifted a lot of heavy things, constantly worked with my arms. In my work my posture was the same every day… that obviously affects your neck. (P09).

Others considered that their ongoing condition was related to reduced physical capacity as a consequence of a low activity level, ageing, previous surgery and/or unresolved tissue damage related to a mechanical trauma in their history. For example,

Q8: I had a car accident last year… they call it a whiplash; your muscles get damaged. Generally, that should be healed in half a year, but that is not the case with me…, I think that’s because I was operated on my stomach a few times, so I wasn’t physically fit, and yes, I’m also almost 50, so that will also play a role. (P14)

Some reported the contribution of psychological factors, such as stress, uncertainty, anxiety and a lack of distraction or meaningful activities. For example,

Q9: Whenever I turned my head, my neck made a cracking sound and I thought ‘this can’t be right’… I became afraid to turn my head and tried to move my neck as little as possible… I ended up losing my job. I became depressed because of this; I suffer from neck pain all the time and I really miss my job because I hardly have any social contact anymore… I couldn’t cycle or walk anymore because of my neck pain, while I always enjoyed these activities. The lack of distraction made me eat and smoke a lot… I thought ‘it probably won’t get any better’…If I always have to live like this, I’d rather die. (P3)

Others related their persistent neck pain condition to external factors, such as their bed, pillow or weather conditions.

Theme 2: labelling my condition

The subtheme regarding the labelling of their condition was ‘a range of beliefs; from unknown to clear (predominantly biomedical) beliefs’. For five participants it was difficult to label their condition, they ‘didn’t know’ (P5, P8, P12, P16, P20). For example,

Q10: I don’t know where the pain comes from, they [the doctors] say ‘it is because of a hernia’, but I don’t have an explanation for it myself. (P8)

Others used more general terms to describe their condition, such as ‘being vulnerable’ (P3, P13, P15), ‘nothing serious’ (P12), ‘a result of stress or dissatisfaction’ (P3, P6, P11, P15). For example,

Q11: There is also a lot going on mentally…, most of it is in my head. (P3)

Most participants linked their pain to an underlying anatomical or pathophysiological mechanism. The presence of increased muscle tension, muscle cramps, degenerative processes (e.g., arthrosis), nerve entrapment or disc herniation, malalignment of a joint and/or instability of the spine was associated with their neck pain. For example,

              “Q12: My scoliosis and my pain, that’s a 100% match (P19) or

Q13: What do these cracking noises mean to me? Uhh… maybe something is wrong … that some bones are not in the right position? (P13)”.

Theme 3: impact: multiple symptoms that require attention and action

Persistent neck pain was often accompanied by other symptoms, such as reduced ability to concentrate, headache, dizziness, thoracic and/or shoulder pain, clicking/crepitus, being more sensitive to other stimuli, fatigue, and visual and sleep disturbances. For example,

Q14: Pain and feeling nauseous and very, very tired, but also not being able to sleep, that is really annoying…sometimes when I would turn my neck too far, I can’t look through my eyes because of a headache. (P2)

These symptoms affected the participants’ daily functioning (subtheme: ‘the impact of neck pain on daily functioning’). Several participants were hindered in their normal activities, but ‘just kept going’ (P1, P4, P10, P12, P19), while others felt severely disabled and compelled to pace themselves, limit or even stop their (social) activities, their work and/or sports (subtheme ‘impact on daily functioning’). This sometimes made their situation unbearable (P2, P3, P5, P8, P14, P16, P17). For example,

Q15: I have had this pain for over 10 years but, nevertheless, I still just do everything. (P12) or

Q16: Anything I do, I feel pressure in my neck. It doesn’t matter what I do, even when driving I have to stop after half an hour because the pain starts again. I can’t do anything anymore. (P5).

In all participants the complex of symptoms and its perceived consequences affected them emotionally (subtheme ‘emotional impact’). Pain was reported to be difficult to cope with (as reported in Q9, Q5) and participants often felt frustrated, angry, insecure, anxious, dejected, sad or depressed. For all participants the pain constantly required attention,which made it difficult to accept the situation and was a facilitator for seeking care. For example,

Q17: Sometimes I just want to cry, then I don’t want to see anyone, I want a solution. I just keep searching…, because I can’t live like this. (P8)

Some felt guilty about the impact of their pain on their loved ones (P2, P3, P5, P8, P17, P12), sometimes withdrew and felt lonely (P3, P7, P8, P14). For example,

Q18: Interviewer: Does your situation affect your mood? Participant: Yes, for example, when my family wants to do something and I am in a lot of pain, I can’t join them. Or they want to invite someone, then… if you’re in pain you don’t want to see anyone, that hurts me a lot [gets emotional]. I just want to participate…, join in with my children, with my family, with my husband, yes… just like before, doing everything myself. (P8)

Theme 4: coping with neck pain

The way participants made sense of their pain guided their health behaviour (subtheme: ‘choosing the coping strategies that seem to make sense’). Those who perceived their neck was ‘vulnerable’, tended to limit their load and/or avoided more strenuous activities (such as lifting, cleaning windows, prolonged computer work, reading), withdrew from social and/or work-related activities, adapted the context (e.g., changed their chair or bed) and/or sought social support (children or partner). For example,

Q19: I always have to think ahead, sometimes my husband accompanies me to assist me, otherwise it’s too heavy for me. Sometimes others think ‘oh, let’s go out for dinner’, but I can’t work on a photography assignment and go out for dinner afterwards. (P2)

If they perceived their neck was ‘worn out’, they believed this process would continue and this should be accepted. For those who perceived that de-conditioning played a role in their pain, their strategy was building strength and resilience. For example,

Q20: In the beginning I was totally out of shape, but now I really notice that I am getting stronger. (P3)

Others perceived their neck was ‘stuck’ and thought that ‘it should be loosened’. These people used multiple parallel strategies, such as general movements, exercises, stretching, massage, medication, heat and/or paying attention to their posture. For example,

Q21: It is completely tense, so I try to stretch the other side and I use some massage lotion. (P4)

All participants indicated they benefited from exercise, although the duration, frequency and intensity of the exercises varied enormously. For example,

Q22: Sometimes there are weeks with quite a lot of office work, then I really have to walk in between or play table tennis or something…, in other weeks I cycle a lot, that’s better… When exercising [running], I have pain in the beginning, but once I am warmed up, the pain becomes less. I know that, so I keep running (P1) or

Q23: In my case, walking means strolling and I cycle very slowly, otherwise it becomes too much,… at least it’s good for me. (P11).

Many participants mentioned that having a job was very important for them. Work provided distraction, positive energy, satisfaction and made them meaningful to others. For example,

Q24: I don’t want to stay at home because of my pain, that only makes me more depressed. I have to carry on, I need the distraction, I help a child [at my workplace; a primary school], for example, that helps me enormously, that’s how I keep my head above water. (P9)

Sometimes work was also perceived to be burdensome because ‘too much is asked’ (P3, P5, P7, P16, P17). Loss of work was accompanied by strong negative emotions (as reported in Q9), although it was sometimes also a relief to have less obligations (P7, P16, P17).

Q25: Unfortunately I can’t fulfil my job anymore, but as a result of this there is more time for myself…I can now set my own limits and have less obligations. It sounds very simple, but it is very important to me. (P16)

Theme 5: along the road: perceptions and experiences

Some participants’ perceptions were clearly expressed, consistent and seemed strongly engrained, while others used multiple explanations, which were less clearly defined, and/or were still looking for a plausible explanation for their pain and how to cope with it. The participant’s expectations regarding the prognosis differed and were prompted by the duration of their neck pain episode, previous experiences, treatment results and their beliefs about the underlying (pathophysiological) process. Many participants remained hopeful and continued to look for a solution and (partial) relief from their symptoms by visiting health professionals and adapting their behaviour (P1,P2,P3,P6,P8,P10,P11,P12,P13,P15,P18,P20). Many of them did not believe that their pain would disappear completely, but expected that their situation would be bearable and that they could cope with it (P1,P3,P6,P11,P13,P15,P18,P19,P20). For example,

Q26: In 10 years time, I don’t think I will be without neck pain, but it would be nice, well I would like it, if I can create a situation, together with my physiotherapist, that I still have some neck pain, and that I have the right exercises, so when the pain comes I know what I can do about it. (P15)

Others were more negative (P4,P5,P7,P8,P14,P16) about the prognosis. For example,

Q27: What I can do physically has been reduced considerably, and that makes me anxious; where will this process end? (P16)

Uncertainty about the future amplified the impact of the participants’ neck pain. This uncertainty was sometimes related to everyday situations, such as fear of pain when resuming activities, but mainly concerned the long-term perspective; some participants felt uncertain whether their condition would improve (P5, P8, P9, P10, P12, P14, P16, P17) (subtheme ‘uncertainty for the future’). For example,

Q28: Yes, I’m really worried about that: ‘will it ever completely go away or will I always have symptoms?’, that is my main concern. (P10)

Most participants indicated that it was important for them to have an appropriate understanding of their condition that fit their situation and that would help them to gain control over it (subtheme ‘need for an appropriate explanatory construct’). For example,

Q29: I try to understand what’s going on and when, at some point, you make sense of it, then it is easier for me to cope with it. (P16)

Frequently, they described a path of trial and error accompanied by negative emotions and feelings of powerlessness. This was especially the case in participants with severely disabling neck pain, who lacked positive experiences with (self)management of their pain and who visited multiple healthcare professionals. For example,

Q30: I really don’t know. I visit the hospital or my doctor so often, but I have no solution, neither do they…I’ve already had a lot of physiotherapy. and I consulted the pain clinic, I received [Buprenorphine] patches and laser therapy., I frequently visited a psychologist, but that didn’t work for me. Maybe I need another treatment, another diagnostic assessment. Yes, now I am waiting, because the 22nd I have to go to the doctor again, I’m desperate… I will visit my country of birth to go to a doctor, to have an examination there and see what they say. (P8)

In participants with a gradual onset of pain and a broad biopsychosocial view, who had experienced that they could influence their condition themselves, beliefs seemed more flexible and optimistic (as reported in Q26).

Most participants seemed to be open to different coping strategies, as long as these strategies fit with the way they made sense of their neck pain or were logical to them. All participants had a perception that ‘a quick fix solution’ was not realistic. For example,

Q31: It’s not a broken leg that you can see and repair. Unfortunately, I have experienced that this cannot be fixed. So, I understand that it is not easy for a healthcare provider… At the moment, I do experience that my situation is being looked at from a broader perspective, and that supports me. (P16)

Relationships between the themes

The participants’ narratives showed a strong relationship between the themes. The way participants labelled their condition influenced their coping strategies. These strategies were then adjusted based on own experiences and/or information from others. Whether or not the actual experience matched the participants’ expectations was a strong determinant of their confidence to feel in control in the future. Uncertainty about prognosis, prompted by negative experiences in the past, was a major stressor.

The formation of illness perceptions

Three themes emerged regarding the formation of illness perceptions, being 1) ‘A dominant role of healthcare professionals’, 2) ‘Combining the patient’s and the clinician’s perceptions’ and 3) ‘The importance of (ex)changing perspectives’. The origin, themes and subthemes are presented in Tables 3 and explained in this paragraph (see also Supplementary file 3 for an extended version of this Table, including quotes).

Theme 1: a dominant role of healthcare professionals

Although personal experiences were important in the origination of illness perceptions (see below Q34), many of the participants described their illness perceptions arose from, or were supported by, information from others (e.g., clinicians, family), with a dominant role for healthcare professionals (Q32,Q35-37). For example,

Q32: I’ve been to the chiropractor before… he told me that I have some kind of scoliosis (P19) or

Q33: Also, my mother said: it’s really hard. You just need a good massage… what my mother always notices is that I watched TV with my head tilted… and I still do this. My partner literally says: ‘head straight’. (P12) or

Q34: Interviewer: What made you decide to take more rest? Participant: When I was on holidays for two weeks, I immediately noticed that I was getting better… I didn’t need any medication, and then you go back to work and the symptoms come back, so I thought ‘that’s it’… I also got dizzy when I was on my race bike, so I thought ‘that just isn’t right’, so um.., experiences have taught me that. (P10)

Several participants indicated that they were overloaded with (sometimes contradictory and often incomprehensible) biomedical information (P4, P9, P7, P12) (subtheme ‘biomedically orientated information’). For example,

Q35: Some tell me ‘it’s a herniated disc’, based on the information from a CT-scan, and others say ‘it is just a muscle’, so to be honest, I really don’t know what to believe anymore,… I am also diagnosed as having osteoarthritis,… that’s how you get put in a certain box. (P9)

Some participants initially adopted a biopsychosocial perspective themselves, which seemed to evolve towards a more biomedical perspective due to the influence of interactions with healthcare professionals. For example,

Q36: So, when the neck pain started I thought; ‘I am young, it won’t be anything serious… I sit here all day [in the office for my internship] and I am not having a good time, this manifests itself in my body’… now [after I visited a physiotherapist] I think I am in pain because of my posture, I am told that I was sitting in an incorrect position on a bad chair. And uhh… my back wasn’t straight and my shoulders weren’t aligned. That’s what my physiotherapist told me…’ (P12).

Healthcare professionals often emphasized the underlying patho-anatomical or biomechanical processes, and the therapeutic approach was predominantly biomedical in nature. Information from imaging sometimes enhanced the biomedical perspective (as reported in Q35), but could also rule out the influence of biomedical factors, which could be reassuring. For example,

Q37: …scans were made and then they saw that everything was fine. (P3)

Theme 2: combining the patient’s and the clinician’s perceptions: searching for mutual understanding

Frequently, the participants’ perceptions were a result of the reflection on personal experiences interacting with information from healthcare professionals. Patients and healthcare professionals searched for mutual understanding of the patient’s condition. Sometimes the participants’ perceptions were in line with the perceptions of the healthcare professional and these participants mainly needed confirmation and support (P1,P4,P6, P7, P11,P13,P16, P19). For example,

Q38: The therapist said ‘let’s start with relaxed movements’, … she also told me that a painkiller would be released., which was enough for me to start with exercising. Interviewer: Were you comfortable with this strategy? Participant: Yes, …I try to move without using extra forces, so that you just get your musculoskeletal system a little more flexible. And I think that it’s important to do this, as much as possible. (P11).

Others needed a different perspective to break the vicious circle they were in (P2,P3,P10,P15,P18,P20). For example,

Q39: I’m glad I visit someone who opened my eyes,… I’m moving my head more frequently, it is painful, but he [the therapist] says:‘nothing will happen to your neck’, so I now realise that I just have to exercise, cycle, walk and keep going and I feel that my condition improves. (P3)

Sometimes the explanation provided by their healthcare professional was not aligned with the participant’s perceptions of their condition, which made it more difficult to cope with their pain. Some participants indicated that they had met clinicians who assumed that their health problem could (and should) be resolved, while (based on their own experiences) they no longer had this expectation (P1, P9, P16, P18, P17). For example,

Q40: He told me that with this approach, it should get better,. he suggested: ‘if you do this and that, then it should get better’, but in my situation this is not the case,… I feel that I’m falling short, that it is my fault… One day I’m feeling really bad and the next day it’s better, but that doesn’t mean that everything can be resolved, that’s just not true. At least, that’s what I have experienced. (P16)

Subsequently, when the course of their condition deviated from the scenario outlined by their healthcare professional, several participants felt guilty (“Is the persistence of pain my fault?”), and became insecure, despondent or frustrated. They lacked someone who paid attention to their situation and who continued to partner with them to improve it. For example,

Q41: I just need someone to say: ‘how are you today? How was your week?’ And not that the message is: ‘if you do this or do that, then next week it will be much better… [I’d appreciate it] if it is okay that it [the pain] is there. Perhaps the therapy should be: how can I support you to function optimally despite the pain? (P16)

Theme 3: the importance of (ex)changing perspectives

Most participants indicated that it was important for them to exchange perspectives with the professional. They noticed that it was helpful to them if clinicians listened carefully, validated their feelings and thoughts, and shared ideas regarding perceptions relating to their condition and strategies to cope with it. According to some, gaining insight into their own condition was considered an important part of the solution (P2,P3, P16, P18, P20). For example,

Q42: What does the explanation mean to me? It helps me a little bit in understanding my own body…and then, usually the next time, I feel much, much better. (P20)