Of the 19 interviews, 15 were performed by telephone. The informants were 11 women and eight men, with a mean age of 47 years (range 24–65 years) (Table
1). On average, they had experienced pain for 10 years (range 2–37 years). For most informants, pain was related to musculoskeletal and joint diseases (53%).
Table 1Characteristics of the informants (n = 19)
Gender |
Female | 11 |
Male | 8 |
Age |
< 35 years | 5 |
35–50 years | 5 |
51–60 years | 6 |
61 years or more | 3 |
Living status |
Living with family members | 14 |
Living alone | 5 |
Working status |
Working part or full time | 4 |
Not working | 15 |
Pain duration |
1–5 years | 8 |
6–9 years | 4 |
10 years or more | 7 |
Main reason for pain |
Musculoskeletal and joint pain | 10 |
Neuropathy and nerve damages | 5 |
Abdominal pain | 1 |
Other diseases or injuries | 3 |
The informants had received different types and lengths of treatments at the pain centres (Table
2). Most informants (14 of 19) had been to at least one multidisciplinary assessment in which a physician, a psychologist and a physiotherapist had been present. The treatment period varied from one day to over one year, and time since the last contact with the pain centre ranged from two weeks to 1 ½ years. Two informants were still receiving treatment.
Table 2Overview over the informants’ treatment at the pain centre (n = 19)
Multidisciplinary sessions * | 5 | 11 | 3 | 0 | 0 | 0 |
Separate sessions psychologist | 5 | 10 | 1 | 2 | 0 | 1 |
Separate sessions physiotherapist | 6 | 10 | 1 | 1 | 0 | 1 |
Separate sessions physician | 7 | 8 | 0 | 2 | 2 | 0 |
Separate sessions nurse | 18 | 0 | 0 | 0 | 1 | 0 |
Procedures e.g., nerve block, spinal stimulator | 17 | 2 | 0 | 0 | 0 | 0 |
Prior to the pain centre referral, most informants had used multiple healthcare services due to pain, including regular contact with their GPs. Examples of services used were physiotherapy, physical activity support and rehabilitation centres in addition to medical specialists such as rheumatologists, neurosurgeons, neurologists and specialists in internal medicine.
The findings were categorised into the following themes: expectations of, experiences from and changes after attending the pain centre.
Expectations of attending the pain Centre
Some of the informants spontaneously said they did not have any expectations of attending the pain centre. Some had only been a patient there because their GPs did not know what else to do for them. Others said they had vague expectations due to a lack of knowledge about the service. Other informants had received information regarding what to expect of the pain centre from their GPs, and yet others had searched the Internet and social media for information and consequently had some knowledge of the pain centre treatment procedures. Still, they said they had few expectations of attending the pain centre.
When asked to elaborate, informants discussed areas in which they hoped to receive help. Some said that they had no expectations that the pain centre treatment would alleviate their pain, as no other pain treatment previously had been efficient; however, they also said they had had higher expectations of this service because the staff at the pain centre was perceived to be experts in the field, and therefore they had hoped to receive treatment that would actually help them.
‘I had expectations related to that they [the pain centre staff] had more experiences with pain and pain situations and that they therefore would be better to suggest different kinds of pain medication I could try out’ (Male, 40- 44 years, attended treatment over time).
Other informants discussed more general expectations related to how to manage pain in everyday life, help to move forward and to be educated regarding what happens in their bodies when they experience pain. Some had expectations related to pharmacological treatments, including informants who hoped for a prescription for medical cannabis, or specific procedures such as nerve blocks, and others hoped to receive a diagnosis. For instance, one informant stated that she had frequently seen her GP over the last six years without receiving a diagnosis that could explain her pain.
‘I have tried several services and medical tests. So, the pain centre became the last opportunity for both me and my GP’ (Female, 25- 29 years, attended treatment over time).
Experiences from attending the pain Centre
The pain centres’ multidisciplinary approach was new to most of the informants. Some said they found the approach useful as it led to all aspects of life with pain being considered. Several informants said they appreciated the focus on symptoms rather than on their diagnosis, which was different from other services they had received due to pain.
‘On the whole, it was nice that at the pain centre they focussed on what actually was present. A kind of- this is the problem-, we do not care what causes it, we will just try to solve it the best way we can’ (Male, 40- 44 years, attended treatment over time).
While most informants appreciated the multidisciplinary approach, others found it unnecessary, as they did not recognise a need to be seen by all the attending professions. This could be because they simply wanted to receive a prescription, which required a consultation with a physician with a speciality in pain treatment. One informant stated that she had experienced the multidisciplinary session as a long interrogation in which the psychologist focused on previous life events related to her childhood and her broken marriage, even though her concerns were related to neuropathic pain.
‘What I reacted to was that the physiotherapist said nothing, and the physician said next to nothing. What I felt they were fishing for were issues concerning my psyche. It was quite uncomfortable to put it mildly’ (Female, 65- 69 years, attended one or two multidisciplinary sessions).
Several informants spontaneously discussed that at the pain centre, they had been warmly met and that this had left them with a feeling of being seen as a whole person. They said they had been listened to when presenting their struggles and questions, not needing to try so hard to explain themselves because it was obvious to everyone why they were there. The staff was perceived as calm, understanding and respectful which the informants said was reassuring. To some degree, this contrasted with other services they had attended in which some informants discussed being ‘looked down on’ when they sought help for their pain.
‘There was nothing they [the pain centre staff] could do really because of my situation. But I experienced it [the treatment at the pain centre] as nice because they sincerely tried to suggest things I could try. I got to try out some medications as well. So, I think it was quite good’ (Female, 35- 39 years, attended one or two multidisciplinary sessions).
On the other hand, some informants had not experienced the meeting with the pain centre staff as positive. One informant said she perceived the staff to be discouraged with the work, and some were even rude and patronising. She said that the staff did not behave the way they should in meetings with a vulnerable group. For instance, when she had asked about the purpose of the multidisciplinary approach, she said she did not get any good answers, and consequently, she found the whole treatment approach unclear. Other informants also said it was unclear what the aim of the treatment was, which in turn made it difficult to determine when they had reached their treatment goals.
Among those offered only one or two multidisciplinary sessions, some said they found this to be a satisfying and adequate procedure, while others perceived it be too short and insufficient. One reason given was that they needed more time to get to know the staff to be comfortable with sharing their problems. They had wanted the treatment to proceed beyond the multidisciplinary sessions and said they found the procedure not to have room for adjustments to fulfil their specific needs for treatment. Instead, they were offered something they recognised as a standard procedure. One informant described the pain centre session as follows:
‘They just ask about how you are doing, and I got the impression that they were checking your psyche. Whether your psyche was causing the pain and why you were there. The physiotherapist just measured things and the physician just asked questions” (Female, 50- 54 years, attended one or two multidisciplinary sessions).
Other informants had received treatment over time. One example was having several sessions with the pain centre physician to try different pain medications to find the ones most helpful. For one informant, this gave confidence in that he had tried all available medicine. Another informant discussed follow-up between sessions with regular phone calls from the pain centre nurse. This gave him an opportunity to ask questions and to receive confirmation on whether he made the right choices for his treatment plan. He said this was reassuring and made him feel safe in his daily decision making. Another informant who had regular sessions over time with both the pain centre’s psychologist and the physiotherapist found them to fulfil each other as a team, although they provided separate sessions. She said the treatment at the pain centre was a lifebuoy in what for her was a demanding and exhausting life situation:
‘It’s a really nice kind of lifebuoy coming here, when one has nothing else’ (Female, 30- 34 years, attended treatment over time).
Most informants had attended a closing session during which a physician, a psychologist and a physiotherapist had been present. Some informants described the closing session as a session during which they were presented with a summary or a report the professionals had completed together beforehand. Although they were given the opportunity to provide input for the summary, it was said that the conclusions were perceived as already drawn. As such, some perceived the closing session as a briefing regarding what was decided by the staff rather than a session, they could actively participate in.
‘They asked questions repeatedly, and I answered. Then, they had a conversation among themselves before I got back to them again. There was nothing else. I did not get any advice or something like that. It was a waste of time, really’ (Female, 50- 54 years, attended one or two multidisciplinary sessions).
On the other hand, other informants said they found the closing session to be useful as it had presented advice on how to manage their pain even better. For some, this was a positive and even unexpected benefit, as they had not received this from any other service they had attended. For some informants, bringing their spouses to the closing session was suggested. Those who did said it was useful that the spouse received information about pain and pain management, which they expected to be a form of support later.
None of the informants had experienced that the questionnaire they had completed on beforehand had been part of their sessions. One of the informants said he found the questionnaire difficult to complete because his pain situation changed during the day, which made it difficult to provide a precise and correct score.
Changes after attending the pain Centre
When asked about changes due to the pain centre treatment, some informants said they now perceived their days to be more stable with fewer pain fluctuations and that it was easier to work on accepting the pain after being told that their condition was not life threatening. One of the informants discussed coming to terms with his situation after being at the pain centre:
‘In the end you just stop thinking that this day will be better than yesterday, but that is not a bad thing, really’ (Male, 40- 44 years, attended treatment over time).
Some informants discussed positive changes related to the pain centre treatment, and one given reason was that it had served as a first step towards an improved everyday life. One informant said that if she had attended the pain centre earlier, she would have been disappointed because she then would have expected the treatment to cure her. Having experienced that previous treatment had not helped, made her appreciate the treatment helping her manage the pain better. Another informant said that at the pain centre he had received useful information regarding how both the body and the psyche affected his pain experience. He found this highly useful and had accordingly changed his work situation and included a focus on issues such as stress reduction, proper breathing and sleep into his everyday routine.
Some informants said that when reflecting on the pain centre, they believed they could have managed without it. Some said that attending the pain centre had been okay but also unnecessary because all they had been told was that they should just proceed with what they were already doing. One informant said the advice was frustrating because she had wanted to attend the pain centre because nothing she did, helped. Some informants said that because they had not received any information or advice that was useful, nothing had changed in their lives after the visit to the pain centre.
‘I have been to my GP afterwards. We decided to just continue as before’ (Female, 50- 54 years, attended one or two multidisciplinary sessions).
Several informants said they still searched for efficient pain treatment as their everyday life had not improved in any way; however, it was difficult to determine where to turn for reliable guidance and advice, and they said they would have appreciated it if the pain centre would have guided them in this process. Consequently, several informants said they lacked guidance regarding where to seek reliable and trustworthy information and advice regarding their situations:
‘There is a lot of information out there. What is difficult is to know what to trust’ (Male, 40- 44 years, attended treatment over time).
Some informants also said they would have appreciated being referred to a service that would build on what they had learned at the pain centre, such as in their municipalities. Some stated that it had been suggested to continue treatment, such as with a physiotherapist, but that it was sometimes difficult to find available and affordable treatment.