Participants’ experiences from group-based treatment at multidisciplinary pain centres - a qualitative study

Setting

The Norwegian pain centres, situated at the regional university hospitals, offer multidisciplinary outpatient services to people suffering from pain, regardless of diagnosis. Potential patients are referred by their general practitioners (GPs) or medical specialists. The pain centres care for a heterogenous group of patients [21, 22], typically those who generally have poor functioning and who often have tried many standard treatments without effect [23]. Thus, the criteria for being granted pain centre treatment are expected benefit from the health care provided, that the expected costs are reasonably proportionate with the outcome of the intervention and that all other available primary and secondary care services have been tried prior to the pain centre referral [24]. Common for pain centres’ treatment is the multidisciplinary approach, which typically comprise a multidisciplinary assessment followed by individual outpatient treatment by one or more of the professionals at the pain centre [21].

Interventions

The RCT in which the study was performed, included three interventions, whereas the current study included participants from group 2 and 3:

1. Acceptance and Commitment Therapy (ACT): The ACT group followed a manual based on the work of Hayes and colleagues [25]. The manual was adapted to a group-setting and included all the dynamic processes of ACT; committed action, values, self as context, presence in the moment, defusion and acceptance.

2. ACT with enhanced mindfulness training (ACT + M): The group received the same content as the ACT group, but some of the time was spent on mindfulness exercises. Patients received audio recordings and videos to aid daily practice at home based on the program developed by Kabat-Zinn [26].

3. Self-management (SM): The group aimed at improving self-management and social identification [27, 28]. Participants received information on and discussed with the other group participants relevant topics for pain self-management, including pain and symptom management, stress, sleep, eating habits, mental health problems, communication skills and physical activity. The participants received a leaflet containing descriptions of the course material but there were no expectations of the participants to use the material between the sessions.

Each of the interventions had groups of up to 10 participants, was led by two trained health professionals and had a planned duration of eight four-h sessions one week apart. Due to the inset of the Covid19, the groups from which the participants in the current study were recruited, were offered five physical sessions and one sixth session on a digital platform.

Informants and recruitment

Only persons taking part in the RCT were eligible for this qualitative study. The inclusion criteria for the RCT were adult patients referred to one of the pain centres with a primary diagnosis of chronic pain lasting for at least six months. Exclusion criteria were severe somatic disease or severe mental disorder (ongoing mania, psychosis, suicidal ideation or substance abuse/addiction). In addition, patients who could not communicate in Norwegian or who needed 24-h personal assistance were excluded.

An additional inclusion criterion for this qualitative study were persons of both sexes who had taken part in ACT + M or SM groups. It was chosen to recruit from only these two groups to get maximum variation in experiences by choosing the two most different interventions.

To recruit informants, the pain centre staff identified eligible persons and sent an invitation that included information on the intentions of the study, a consent form and a prepaid envelop. When signed consent was returned to the staff, they passed on the name and phone number to the authors who made an appointment for the interview.

A total of 53 eligible persons were sent an invitation. One reminder was sent by the pain centre staff if a response was not received after two weeks. Recruitment continued until sufficient data to answer the aim was collected.

Data collection and interview guide

All authors participated in conducting the interviews. The interviews were done by using a digital platform due to the Covid19-situation and were audio recorded. The interviews lasted between 37 and 70 min (mean duration 55 min).

The interview guide was semi-structured with open-ended questions to allow the informants to speak freely. The guide was developed for this study, based on the aim of the study, previous studies and discussions among the authors who have experiences from pain treatment and research in this area. After evaluating the first two interviews, some minor changes in the sequence of the questions was made, but no new questions were added.

The main question in the interview guide was: ‘Can you please tell me about how you experienced the group treatment you participated in?’ If not spontaneously talked about by the informants, they were asked what their situation had been when they were referred to the pain centre, their expectations to the group-based treatment and how they had been after the group treatment ended.

Data analysis

The data were analysed following systematic text condensation, which is a descriptive thematic cross-case analysis strategy involving an iterative four-step analysis procedure [29].

In the first step, the authors worked to gain an overall impression of the data and identified seven preliminary themes; learning something new, motivation and hope, the course leaders professionalism, the pain centre atmosphere, the impact of participating in a group-based treatment, views on content and treatment principles, and effects on pain. In the second step, all authors participated in a systematic review of the interviews to identify meaning units relevant for the research question. The meaning units were coded, and sorted into the preliminary themes. Thereafter, the themes were adjusted based on discussions among all authors in an iterative process.

In the third step, the authors divided among themselves the different themes to perform a systematic abstraction of meaning units, reducing the content into a condensate that maintained the informants’ sayings. The authors had several discussions on the condensates resulting in further adjustments and renaming of the themes. In the final fourth step, the content of the condensates was synthesised into generalised descriptions and concepts by the first author (THN), while ensuring that the result still reflected the original context.

The authors identified illustrative citations, which were translated by the first author and validated by the co-authors. The mind mapping tool MindManager [26] and Excel-sheets were used as systematization tools during the analyses (See Supplementary Material Table S1, for illustration of the analysis process).

Hoping to get better but not expecting it

Most informants said they had few expectations to what the group-based treatments could do for them, although there were some who said they had hoped to not come in certain groups. For some, their low expectations were linked to knowing little about the treatments in advance. Some said they only became aware of the focus in the group they were randomised to after that the treatment had begun while others said they had expected to meet a pain specialist, e.g., to get a specific examination or new pain medication.

Few informants had expected the treatment to reduce their pain to any great extent. It was said to be similar to their attitude when they had tried new treatments before; they hoped it would make them better, but they did not think it realistic that it would. The reason given was having been disappointed so many times before and therefore choosing not to have to high hopes.

“I have learned to not have too high expectations, because if you have too high expectations you will only be disappointed” (Male, SM-group)

Still, some had specific expectations to the group-based treatments. One was about hoping to learn techniques to manage pain better by using their thoughts and mind, whereas others spoke about hoping to gain a greater understanding of how and why their pain arose. Moreover, some had expectations of learning from the experiences of the other group participants, although there was also some who said they were sceptical about sharing their own experiences with strangers.

“I was somewhat apprehensive, in the sense that sitting next to several people in a group setting might offer some challenges for me as a type” (Male, SM-group)

Regardless of whether the informants had specific or few expectations or hopes of benefiting from the treatments, they all said that they entered the treatments with an open mind.

Relevant content but challenging concepts

The content of the treatments was talked about in positive terms by most informants, also those who said they remembered little from them. The informants found the different topics of the group sessions to connect well, they were interesting and had initiated reflections in themselves. Some said they had learned new things, such as pain theory and the use of mindfulness, while others were happy to have a repetition of things they already knew.

“In relation to pain and how the body reacts, how the mind sends out signals, yes, parts of it were completely new to me. But at the same time there were some topics that was known, and kind of confirmed that, yes, that is how it is” (Female, SM-group)

There was though a variation in how relevant the informants found the various topics. Some said they understood that not everything could be equally relevant for all, as there were different people participating with different interests, experiences, and needs.

“For instance, diet and exercise, for me it was probably a bit like that, yes, I know so much about that. But for others, I think maybe it was ok. What I thought was best, was that about anatomy and how the brain works. Which, of course, maybe others did not find that interesting» (Female, SM-group)

Especially the use of practical exercises, illustrations and metaphors were highlighted as useful by the informants. Many of those who had participated in the ACT + M group said they had used the audio files and videos as help and guidance to perform the exercises outside the group sessions. Some said that they still used the tools daily, while others said that the exercises took too much time or were too difficult. Those who had attended the self-management groups said that the booklet with descriptions of what they had went through on the various treatment days had been useful both during the treatment and afterwards. Some recommended that such a booklet should be given to everyone with long-term pain because it provided knowledge that easily could be applied into an everyday life.

«Being able to bring out the booklet and flip through it, I’m kind of yellowing [marking] things out as I go along. I think it is good to be able to do that” (Female, SM-group)

But there were also informants who had experienced parts of the treatments as difficult to grasp and understand. Especially those who had participated in ACT + M talked about content that was perceived as difficult. For example, some found the concept of ‘being able to breathe or think away the pain’, difficult to understand and believe in. Another example was the understanding of values in ACT. Several informants who had attended the ACT + M groups spoke about how values were important when deciding to do something, such as physical activity. But some went on to say that following the treatment, they considered it not good enough if they were physically active due to an obligation or because others had said they ought to, because then, they had not been physical active truly based on their own values.

“It is the values, that is terribly difficult. I reckon I am not the only one who think that, because what are really values, compared to goals?” (Male, ACT + M-group)

All the informants agreed that those who led the group sessions had been knowledgeable, available for questions, enthusiastic and good at communicating. The leaders were said to be flexible in terms of dividing the time between what the participants needed to talk about and what was pre-scheduled for the sessions. But it was also pointed out that sometimes, it had been challenging for the group leaders to divide their time and attention between the participants.

“One person took up a lot of space. Probably needed it, but it should somehow not have affected the rest of us, because it became very much, was a lot about that person then” (Female, ACT + M-group)

Being in a group was stimulating but exposing

Generally, the informants spoke positively about being in a group, and some said that for this kind of treatments they would prefer groups over individual sessions. Hearing other participants stories and experiences, as well as having an arena for being social and to discuss their own experiences, was highlighted as positive. Hence, being with others who understood their situation was said to provide an experience of acceptance and reduced their feeling of being alone with their challenges.

“It was really nice to have an opportunity to get out of the house, and have one, yes, a good reason to meet someone else in the same situation even if they did not have the exact same type of pain as me” (Male, ACT + M-group).

Although most informants said that they greatly appreciated the social aspects of the treatments, there were also some who said they had held back. To share their stories with others were said to be challenging to begin with, but as they gained more practice, it became easier. For some however, it remained uncomfortable to share private things and they therefore only shared what they called minor things. Others said that although they had contributed with own experiences to the group themselves, they had not had much use of what the others talked about.

There were varied opinions about the composition of the groups, i.e., that they had been put together across diagnoses, pain experience, life circumstances, age and sex. For most, it had been nice to meet others who did not necessarily struggle with exactly the same as themselves, but who still talked about challenges they could relate to and learn from. For some, this gave perspective to their own situation, both in the form of an awareness of that it was possible to have other struggles than they had themselves and also that there were others who had more to struggle with than themselves.

Others said, however, that the differences between participants got in the way of their own benefit from the treatment and that the treatment was probably better suited for those who were either healthier or sicker than themselves. For some, the difference in life situation, e.g., that they themselves worked while most of those in the group were work disabled, limited the usefulness of some of the discussions.

Limited changes afterwards but valuable learning

Experiences about the benefits after taking part in the group treatments ranged from some saying they had not noticed any change in pain or function either during or after the group-based treatments, to others describing the treatment as opening new understandings and perceiving it as a rescue.

Those who reported no change were not necessarily so surprised since they had lived with pain for a long time and had thought in advance that it probably would not be possible to think away their pain. Others said that they had been surprised by how they could use their mind by using techniques that did not necessarily reduce the pain itself, but that made them manage it differently. One example was handling stress better after participating in ACT + M. There were also some who had made larger changes due to that the group treatment had given them new strength and motivation to make lifestyle changes, like exercise and being physically and socially active.

“I think more that, ‘now you stress too much, you have to take it easy’. I have learned how to breathe with my stomach. And lower my shoulders. I consciously think more about that” (Female, ACT + M-group)

But there were also some who said that even though they experienced to manage and perform the techniques accurately and really put an effort in doing the exercises regularly, this had led to a new demand they had to meet in their everyday life.

“For that, but that’s maybe with all goals really that then there will be, something that lies above you. And that itself can be sometimes, sometimes a little negative. For then you feel that you, a kind of negative feeling that I have to do it” (Male, ACT + M-group)

Strengths and limitations

Strength of the study is the novelty in exploring experiences of non-pharmacological group-based treatments delivered at tertiary care pain centres. Because the intervention groups were heterogeneous and non-diagnosis specific, the results have interest also for primary health care where most chronic pain patients are treated. Still, there are also some noteworthy limitations. The sampling strategy could have led to a biased sample as the informants took part in the RCT and thus excluded those not wanting to take part in group-based treatment or a trial. Nevertheless, our sample showed variation, including informants of both genders, at different ages, with different lengths of pain duration and with various experiences of participating in the treatments. To minimize potential biases during the analysis, all authors participated in the analyses and had repeatedly discussions on the results. The authors different professional background and previous experiences made discussions about preconceptions and understanding of the data a recurring theme during the study. Furthermore, preliminary findings were discussed in a research group on patient education and participation outside the pain centre. Preconceptions were handled by doing analysis during the data collection to be able to adjust the interviews, and by basing the analysis on what the informants said.

Two of the authors (AW and LOD) work as professionals at the pain centre and participate as course leaders for two of the interventions in the current RCT. None of the informants were interviewed by a researcher prior known to them. To enhance the reflexivity of the study, the author group therefore also included researchers without any connection to the ongoing RCT. Hence, the authors brought different preconceptions to the study based on their professional background and previous research experiences. To further enhance the reflexivity, preliminary findings were discussed with a research group outside the pain centre.

Implications

Those who plan to or are already delivering non-pharmacological group-based treatments can use the findings to tailor their interventions even better to the users. Such interventions are experienced as mostly positive, but this can be modified by personal preferences, and previous experiences and knowledge. Awareness of concepts that can be difficult to grasp, the value of heterogeneous groups despite initial scepticism and areas where participants experience benefits are among the study’s significant contributions.