Of the 50 patients who started with MBSR, 43 patients completed the training. Reasons for dropout were the reluctance to face other (palliative) patients (n = 5), training did not fit in schedule (n = 1) and side effects of chemotherapy (n = 1). Of the 43 patients who completed the training, data of 40 patients were available for qualitative data analysis. Thirty-seven patients who participated in MBSR solely for breast cancer patients participated in the focus groups. One palliative patient who could not attend the focus group was interviewed individually, because she could have different experiences as being a minority in the group. Two patients who participated in the group for mixed cancer patients were also interviewed individually. Demographic and clinical characteristics of the study participants are summarized in Table 1.
The analysis of the focus group and interview data resulted in three main themes: anticipatory fear for suffering of others, feeling (un)connected and learning from each other, which can be subdivided into 11 subthemes (see Table 2). It appears that participants go through a process of participation where fear for facing fellow patients especially palliative patients is mostly apparent before the start of MBSR. Throughout the training, participants feel more connected with and supported by one another, which resulted in learning from each other (see Fig. 1).
Theme 1: anticipatory fear for suffering of others
Four categories of anticipatory fear for suffering of others emerged: avoidance of facing fellow patients, fear for a negative course of the disease, identification with suffering of others and survivors’ guilt.
Avoidance of facing fellow patients
Many participants mentioned that before they started with the training, they tended to avoid meeting other breast cancer patients.
Yes so, I did not really need all these stories from my fellow patients. One drama story after another, I was like I’d rather focus on my own story and get that right. That was my starting point.
As a consequence some patients mentioned that they detached themselves from the experiences of fellow patients to protect themselves, especially at the start of the MBSR.
And then, the first time I really did not hear some of your stories. I was thinking, I can’t do it and I won’ t do it. Just to only listen to these stories, so, sure I did miss some things the first time [laughs]. I just could not absorb it all.
Fear for a negative course of the disease
Although patients chose to participate in a mindfulness training for breast cancer, they felt reluctant to face fellow patients, especially palliative patients, as they gave rise to feelings of uncertainty about their own prognosis.
I find that so difficult, every little ache makes me scared that I might die after all.
Identification with suffering of others
For some participants, being in a group with fellow-patients led to identifying with the suffering of others. This identification process appeared to be distressing and could result in fear when experiences of others were used as references for possible outcomes in their own lives.
Well, I thought it was a little scary, (…) my last chemo was not that long ago and I was scared of what would come and then you hear all these stories. I was thinking: oh my goodness, that can happen to me too
Experiencing the stories of fellow patients weighted heavily upon the shoulders of some participants.
Recognition is fine, but I did also experience it as difficult. (…) The intensity of the stories that you hear and the intensity of the emotions and other people’s problems, that I carry along with me
These fears gradually subsided as the training proceeded.
In each MBSR group, only one to two patients who could not be cured anymore participated. Patients with a curative perspective mentioned that they would have found a higher number of palliative group members difficult, in that they might have felt reluctant in sharing their own difficulties which seemed much less important than those of fellow-group members who had to face dying.
I would feel uncomfortable to express my minor concerns, because these are less heavy in comparison to the ones people are dealing with who know they are not going to get better
Theme 2: feeling (un)connected
Participating in the MBSR training with fellow patients resulted in feeling connected with each other. Most participants emphasized the fact that everyone faced the challenge of coping with (breast) cancer as an important benefit of participating in MBSR with fellow-patients. However, participants who were less represented in the group, for example, being the only one with palliative treatment or the only one with a proportionally less intensive treatment for her cancer, reported feeling disconnected from the rest. The theme feeling (un)connected was subdivided into three subthemes: recognition, feeling accepted and feeling disconnected.
Since participants shared a (breast) cancer diagnosis, participants recognized themselves in each other. This recognition lessened the need to explain things that people without (breast) cancer might not understand.
xIt’s really easy because you do not have to explain everything, going through it together makes it really easy for me to be with fellow patients. I think that is the same for everyone. (…) The starting point is about the same.
Because all participants specifically chose for a mindfulness-based training, there was also recognition in the way they wanted to deal with their breast cancer diagnosis.
Because we all chose mindfulness, I think that is also important. You are looking for some deeper feelings
The MBSR training provided an atmosphere of support and safety. The majority of the patients mentioned that participating with fellow patients in MBSR resulted in feelings of connectedness, solidarity and trust.
The fact that you can talk about it without any constraint and that you also feel safe.(…) That you feel safe because you say what you want to say and you don’t feel restricted in what you would like to say because it could be very difficult of upsetting. There were no constraints and I got the impression it was the same for others. That you have a safe place to be.
A few participants belonged to a minority in the group, due to having a poor prognosis or a less intensive treatment than most others in the group, which made them feel less connected with the other patients. One patient described how having incurable cancer, which separated her from the others in the group, made her angry:
It was grief really, after all you do meet women who can continue for another ten years doing hormone therapies or take all kinds of pills. After awhile I was noticing I was getting angry. Like, damn it why are they taking this from me. My life. Although I still try to just go on.
Theme 3: learning from each other
As the training continued and participants gained insight into their feelings, thoughts and emotions, contact with fellow patients facilitated the individual learning processes. The following dimensions of learning emerged from the analysis: acknowledging emotions, de-identification with the disease, gaining different perspective and learning to cope.
Seeing and hearing how fellow patients learned to deal with their emotions during MBSR, facilitated how participants learned to recognize and acknowledge these emotions within themselves. Moreover, they learned to allow these feelings and to experience the positive effects of the willingness of being vulnerable.
Yes, in the whole process of being ill I have learnt to show my vulnerability. Like I just said, I was always tough and yes, I’m OK and no problem at all. I hear the same from others around.’
Furthermore, participants mentioned it was helpful for them to see how others in their group expressed their feelings.
And it really helped me, I find it very difficult to always explain or say how I feel, and they put that into words. And then I realize, well, this is what I mean.
De-identification with disease
In contact with fellow patients, women started to see and get to know the person behind the disease and consequently person and disease became more and more distinct from each other. De-identification took place in how they viewed themselves as well as the others, meaning redefining their identity from being a breast cancer patient to having breast cancer.
We just formed a group of all kinds of people and not diagnoses. And I didn’t think that would happen beforehand. It wasn’t confronting, it wasn’t a nuisance. I mean: Well, D. is incurably ill, but when I think of D. I do not think of her as being incurably ill.
Gaining different perspectives
During the MBSR, patients gained insight into their thoughts, feelings and automatic reaction patterns. Sharing their perspectives with one another led to change in their views and facilitated understanding of what they experienced themselves.
It was very inspiring to hear the other women talk about their experiences especially after the silent retreat day. Hearing other people’s stories helps me put my own problems into perspective. That’s the reason why it’s nice to hear about other experiences
Learning to cope
Seeing how others dealt with having breast cancer in the MBSR training, gave patients strength and helped patients learning to cope differently.
Because I see how she is handling it and that gives me strength as well. Just because if I would ever be in the same situation then that is the way I would like to deal with it. That is really beautiful. That shows me, I don’t have to fear it, I could do it in this way, too.