Five main themes were identified: 1) a comprehensive treatment, 2) the benefits of sharing and connecting with others, 3) growing trust, 4) moving toward valued goals – but some remain, and 5) doing well in treatment. Between two and four subthemes were identified within each main theme. Themes and subthemes are described below and presented in a summary in the Additional file 1.
A comprehensive treatment
A flexible and complex approach
Patients expressed appreciation for the fact that the treatment was intense and comprehensive with a holistic view on their problems, both in response to the initial open question and when they contrasted it to previous treatments. The treatment was also experienced as flexible, with interventions adapted to individual needs.
I felt that this treatment is more thorough than previous treatments … you see the whole person and nothing fell through the cracks … you’re not only focusing too narrowly on the eating disorder. (Participant 9)
Patients also said they liked that RO DBT included both individual therapy and skills training. Some highlighted that it was helpful with text message contact between sessions, others appreciated that contact through text messaging was available, even if they did not use it. Individual therapy was described as essential for adapting the therapy to fit individual needs. Descriptions mentioned that the treatment dealt with the ED from multiple perspectives, that it was adequately long, and that the balance between working with overcontrol in general, such as social signaling, relationships and emotions, and working with ED symptoms, was helpful.
There has been a lot of focus on feelings and relationships, which is very different from previous treatments. I’ve been to day programs several times, focusing only on eating, but that has not been therapy … and once I went to regular therapy with no focus on the food - which made me sink like a stone. This therapy has been a good balance. I was allowed to talk about food if I felt “I have to talk about this and get a structure!” … It’s been a very good combination. (Participant 4)
Even though most participants highlighted the flexibility of the treatment as a strength, one description included a wish for even more flexibility. It was also mentioned that severe ED symptoms, such as starvation, were sometimes an obstacle to working with overcontrol and participating in the skills class, as they made it hard to grasp the essence and the sometimes demanding material and training. Both the lack of flexibility in receiving more help if needed, and the preoccupation with food and weight, was experienced as a hinder for completing the treatment. Some experienced the contents and the materials in skills class as extensive or complicated, while others felt they were overly simplified.
It was hard to focus on other things because I was so caught up in the eating disorder and everything else became less interesting, I was kind of hijacked by the eating disorder … I think it would be easier if you are more stable. (Participant 1)
Following, or not following, the treatment wholeheartedly
Following the treatment wholeheartedly was necessary for it to be helpful. It was also essential to make the decision to challenge your fears and actually practice applying the skills. Some participants described that they did not put enough time and effort into the treatment, and experienced that fear and not being receptive to change prevented them from getting better.
It is important to try to be actively involved and let the treatment come first, to do it at a hundred percent. (Participant 10)
Skills for moving toward valued goals
Values were highlighted as being important for recovery, and skills as helpful for moving toward valued goals. Recurrent and continuous emphasis on values and valued goals helped patients remember and reflect on why they were doing certain things, such as gaining weight or challenging their fears.
It’s like, what do I want to be like? Do I want to sit there when I’m 65, by myself, because no one wants to hang out with you any more, that’s not how you want your life to be. You want to be able to see that you’ve done fun stuff. (Participant 7)
Various skills were pinpointed as helpful. Examples included working with chain analyses to learn how to see patterns, activating their parasympathetic nervous system in order to feel safe in social situations, participating without planning ahead, and using self-enquiry to learn more about oneself. Another example was enhancing intimacy in relationships through sharing personal experiences, e.g., by using a skill called “Match + 1” that helped the patient increase interpersonal warmth and closeness.
I think it is called match, when you start small and go deeper and deeper in the relationship when you talk to someone … I did this when I met a friend, for like half a year, and in the end I was able talk about almost anything. (Participant 4)
Patients described that not gaining adequate skills, for example for reducing anxiety, not following up on homework assignments, or not generalizing enough to the home environment might have hindered progress. Some felt that the material in skills class did not always fit their needs.
The benefits of sharing and connecting with others
A trusting and genuine therapeutic relationship
A trusting, honest and open therapeutic relationship was important in the therapy. In particular, the open and genuine atmosphere was highlighted by the participants as being essential for sharing personal experiences and connecting with the therapist.
It was nice that we had a genuine tone, If I did something my therapist thought was strange, she told me. And if I thought she did anything that was strange, I told her … that was helpful. (Participant 3)
Patients also stated that they liked their therapist and felt that the therapist cared for and understood them. Several patients described the therapists as relaxed. It was seen as important that the therapist believed it was possible to get better; hope could fade if the therapist no longer communicated that change was possible. One description mentioned feelings of being reserved in therapy because of being scared of not being good enough or not being liked by the therapist.
I don’t think it had anything to do with the therapist, I have trust issues and am afraid of not being liked … When I finally let my guard down and dared to show what I felt, then it was easier to feel trust. (Participant 1)
Not being open to the therapist and not feeling like the therapist believed in change, could contribute to treatment drop-out.
Sharing and connecting with others in the group
The skills group provided an opportunity to practice sharing personal information and opinions with others. In particular, patients described sharing as important, saying it helped them recognize themselves in others and gain new perspectives and social connectedness. The experience of opening up and showing weakness – and still being accepted in the group – was seen as helpful.
It was hard at first because you talked about sensitive stuff, but it was really rewarding hearing the others and recognizing myself in them … It was nice, you could help each other out, many of the things they said to me when I told them about things, I still remember and carry with me. (Participant 2)
Patients welcomed that the instructors encouraged openness, and felt that the more they got to know the group, the better things got. If a new member joined, the group became more closed again for a while. Though most patients appreciated that the group was focused on life outside the ED, others wished for more opportunities to talk about the ED. One description mentioned not feeling safe in the group, contributing to treatment drop-out.
There was an initial skepticism regarding various aspects of the therapy, e.g., sharing experiences and thoughts with the therapists and peers in the skills training. However, trust grew as the therapy progressed thanks to the perceived open and non-judgmental approach. Some questioned the contents of the treatment in the beginning, but this changed as the therapy progressed.
In the beginning I felt like “these questions are really uncomfortable, I don’t want to do this”, that’s why I was skeptical in the beginning … I wanted solutions right away, like “This is what you should do” and “if I do that everything will be fine”. I know it doesn’t really work like that, but that’s what I wanted … But looking back it was really helpful. (Participant 5)
Initial skepticism was partly based on the participants’ feelings of agony that came with exposure to something stressful. However, aversive feelings and physiological reactions also helped patients realize that something needed to be challenged. Openness in the group and the therapeutic relationship, as well as skills, helped them overcome such skepticism.
In the beginning I was really suspicious and did not feel that I trusted my therapist … But the better I got, the more proof I got that what she did was good. And also … the more you open up to someone, a bond grows, whether you want it to or not. (Participant 3)
Change takes time
Patients who completed treatment mentioned that change was not immediate, but growing as therapy progressed. It was important to highlight that things might get harder first and that the benefits could come later. Initially, confronting anxiety and gaining weight was difficult and it was important to highlight that a change in well-being would not come just because the weight began stabilizing.
I did a lot of comparing: how fat I was, and if I had breakfast and felt full, that was the only thing I could think of. But then it gradually changed, and like in November I noticed “It’s been several days and I have been sitting on my bus and didn’t think about it, I’ve been thinking about other stuff” — but this was after several months of struggles. (Participant 2)
Moving toward valued goals – but some remain
Getting to know myself in a kind, but sometimes painful, way
Getting to know oneself in a kind way, even though it was sometimes painful, was perceived as a helpful process. The treatment gave the participants new perspectives, self-knowledge and self-awareness through self-enquiry. Reflecting on oneself was perceived as difficult: seeing who you really were, not just what you presented to others. Patients also described the experience of learning to embrace the pain and reflect, rather than escape. Many descriptions mentioned that participants liked themselves more and were kinder toward themselves after the treatment.
Self-enquiry was one of the most positive things for me, to try and find the core, like “why does this make me sad or upset?” “What is this about?” Previously I kind of moved on and just dealt with things … but to take the time and find the essence is kind of a starting point to actually change, because you find out what really needs to change. (Participant 11)
Receiving feedback on their social signaling was described as helpful to improve self-awareness and change overcontrolled behaviors.
It’s like with the body language, like “yeah I have a quite closed body language … oh, so of course people don’t find it enjoyable to talk to me” … now I know that about myself and how to handle it. (Participant 3)
A journey from rigidity to more flexibility, openness, and connectedness
Patients reported that they had gained improved flexibility and freedom, acting more from personal values than from a desire to be perfect and avoid distress. Some felt that the perfectionistic tendencies remained, but they became more able to make mistakes and did not act based on their fears to the same extent. Examples of participating without planning ahead and letting others do things in their own way were described. Changing from avoiding things to showing vulnerability, being more open and being able to show their real feelings, helped improve and deepen relationships.
Even if it is hard to show it or talk about it, I really try to do it anyway … with some friends. Before, I tried to control other people’s picture of me a lot, I do that less now, I really try to show more of who I am … because I noticed that it has brought me stronger and better relationships. (Participant 4)
Changes in the eating disorder
Patients described a normalization of their weight and less ED symptoms, improved flexibility and new perspectives on their body. For example, they described that their body was healthy, that they learned to listen to their body, and that their body was better suited for life in accordance with their personal values. Patients also described that they saw the connection between the ED and their overcontrol and relational difficulties, and that the eating had changed due to changes in the overcontrol behaviors.
I’ve been able to let go of these thoughts about having a certain body and a certain weight, there are other things in life that are more important. There are days where I want to go with the eating disorder, but then I remind myself … “there are friends and school and things that I enjoy doing” … yeah, it’s really nice to have a life. (Participant 6)
There is nothing I can’t eat anymore, that is a huge difference … and when you don’t have as many “don’ts” you can be more social … and eat lunch with a friend, and it’s not so strict where and when. (Participant 8)
… but some remain
Descriptions related to an absence of improvement mentioned that the ED changed character but had not improved, that it was too difficult to make changes, or an unwillingness to continue weight restoration, resulting in treatment drop-out. One description mentioned an intention of coming back to treatment after additional care. Patients sometimes described that they were healthier than before, but that some problems, such as weighing and measuring food at times or having issues with their body, remained. It was also noted that it was challenging to try new things, to start sharing experiences in social situations, and that it was scary and difficult to get closer to others.
… there are some left, and I think it will take some time before that goes away too. I can get a lot of feelings of being fat at times … I guess that is what’s still left, and the fact that I need an approximate plan for my meal routines. (Participant 5)
Doing well in treatment
Not wanting to be a bother
The idea of potentially bothering the therapist was described as an obstacle to seeking contact and asking for help, especially in between sessions and through text messaging. Participants experienced that their difficulties with wanting to perform well or that they felt they were not doing well enough or were not liked by the therapist might have hindered them from seeking as much contact as they would have wanted.
It felt difficult to contact her in between sessions, I felt like I was bothering her … I called a few times when I panicked and really wanted to deal with something. But this way of working between sessions was totally new to me … it could have been clearer, like “It’s not that I’m being nice to you, this is a part of my job, I want you to call”. (Participant 4)
Being the best of patients
Wanting to be a good patient and do well in treatment was common, especially in comparison with others in the skills class. These ideas could be either helpful (e.g., pushing yourself in doing the homework or sharing in skills class) or unhelpful (e.g., not feeling like you were doing enough, or wanting to do too much, making the treatment stressful which might have contributed to treatment drop-out).
It was good that there were other people in the group … it felt a bit like you’re not only disappointing yourself if you’re not working on a homework assignment, but the others in the group as well. (Participant 3)
It was also considered helpful that it was seen as acceptable not to do everything perfectly in treatment. Social comparison in that area could be beneficial at times, since it was focused on adaptive skills, not on food or the ED.
If someone hadn’t done something as well as the others in skills class, it was okay. I think that was a relief, since there wasn’t so much pressure on doing things perfectly. It’s like, what is a perfect treatment, should you be the perfect RO patient, or what?”. (Participant 5)