The analysis resulted in three main themes: (1) Hope for balance, (2) Initiated processes and (3) When and how matters (see Fig. 1). The first theme described how the ED influences exercise behaviors including thoughts about future PA and was further subdivided in: (a) CE as separate part of ED and (b) Future hopes. The second theme described LEAP participation related to insights, cognitions and behaviors and constituted three sub-themes: (a) Spurred reflection, (b) Triggered behaviors, and (c) Increased awareness in retrospect. The third theme focused when and how LEAP ought to be delivered and was subdivided into (a) Treatment design, and (b) Timing.
Themes and subthemes. Number of informants represented in each subtheme in parenthesis
Hope for balance
This theme describes how informants experienced a change in their relation to PA as they developed an ED, their experience of PA while in ED treatment, and their thoughts about PA in the future.
CE as separate part of ED
All informants had been physically active at different levels from a young age. However, as they developed an ED, activity that had previously been joyful became a rigid, monotonous, and compulsive way of burning calories, regulate negative affect, compensate for food intake, and manage thoughts about weight and shape. It also became a way of maintaining a certain view of oneself, and a strive towards ideals. Some individuals differentiated between exercise that they engaged in alone and competitive sports performed with others, with the former perceived as more compulsive and problematic.
“It has been a long time since exercise was fun and joyful. It (PA) has many functions – reducing anxiety,controlling weight, performing, to show off as someone who exercises,a lot to do with the body, the self-image and ideals”. [6]
Some experienced that their PA levels had varied over time. When at its worse, many were active in different ways for hours a day. Resting made them anxious and exercise was prioritized above other things in life and carried out despite injury or illness.
“When at its worst, so to speak, it was seven sessions per week, every day. Sometimes it was double the amount, but usually probably two-three hours. On top of that, I walked for about three-four hours a day. If I rested for one day I felt really anxious, or if I ate too much according to myself… I had to compensate even more the next day”. [2]
The informants were frustrated that their CE had not been given attention or been fully addressed in treatment, despite their experience of CE being such a central part of their ED. CE was identified by therapists, and they were encouraged to reduce their activity, but without further support on how to accomplish such change. Some individuals had been prohibited from exercising but received no support when they eventually were allowed to be active again.
”When I have brought it up (the exercise) the answer has basically been “yes but you have to abstain from exercising now, but you don’t have to do that forever”, something like that, and then we haven’t really talked about it anymore”. [8]
CE was also experienced as driven by several motives, not just weight loss, though ordinary treatment primarily focused on the latter.
“It sometimes felt like, earlier on (in treatment) that there has been a lot of focus on that all exercise is bad for you. Only driven by a desire to lose weight. I didn´t experience it like that. You get into an exercise routine you neither want nor have the energy to do, nor enjoy. If I exercised this much, then I had to do at least the same amount next time. then, it easily becomes a vicious circle. where the exercise becomes time consuming and creates anxiety rather than something positive. And you feel obliged and exercise to avoid getting bad conscience” [9].
Many expressed a wish to regain an enjoyable and healthy relationship to PA. LEAP was experienced as beneficial to gain both knowledge and strategies useful in everyday life, and many appreciated the possibility to reflect upon one’s exercise behaviors.
“Since I have experienced for years that my exercise…loses its purpose for me, that I want exercise to be fun, I want to be able to exercise and actually feel good as a result. And I saw this (LEAP) as an opportunity for me to perhaps rediscover this wishand this kind of healthy thinking and relation to exercise.” [1].
Future hopes
All informants expressed that they wanted to live an active life with enjoyable and balanced PA. As a result of participating in LEAP, they also expressed hope to in the future be able to engage in joyful exercise, treat themselves with more kindness, and rest without feeling anxious. To exercise sustainably, they planned on having a more low-key, sensible attitude towards exercise, with reasonable goals, more in tune with their bodily signals and greater awareness of ED thoughts.
“I see that I have hope…I see that I will try to recognize my boundaries and be able to prioritize other things when I need to, that it (exercise) should not rule my everyday life.” [6].
“I don’t want it (exercise) to feel like an obligation. If you skip training at some point or if you’re ill and can’t train that much for a few days, that it shouldn’t be an inner stress and something that causes anxiety and feels difficult. So that’s my hope, for it to be a balance.” [5].
Many also described a future hope for being more flexible in relation to their PA: “to not be a slave under it” [8], to avoid letting PA being prioritized above other important areas in life such as studies, relationships or work.
“If there is too much of it, performance, in exercise, it’s not fun at all and I try to focus more on sustainability over time” [9].
Several informants talked about the risk of relapsing into using PA as their way of coping, for instance with difficult emotions, and stressed the importance of receiving an ED treatment where they work with all parts of their illness (i.e., including CE) to be able to: “exercise to feel good, not to avoid feeling bad” [3]. As a result of participating in LEAP, they also had hopes of being able to manage potential set-back through strategies and long-term goals, but also by being open about their difficulties and accepting support from loved ones.
“I hope I can handle this, because I constantly return to thoughts like: “what is important to me” and “what do I prioritize”, “what do I want in the long run”, and that I can have people around me who knows about my background, so that I will always dare to say that it’s difficult right now.” [2].
Initiated processes
This theme describes what LEAP initiated in terms of thoughts, behaviors, and changed awareness.
Spurred reflection
LEAP seemed to stimulate thoughts, different perspectives, and engaging reflections. The content of the sessions was described as “interesting”; understanding and discussing the mechanisms maintaining CE was described as “thought provoking”. The informants experienced the fact-based content as relevant and relatable to their difficulties and their own experiences.
“I had different ideas that I believed in about how much one should exercise and about eating in a certain way and all sorts of things, and it lead to a situation that eventually became dangerous. To be shown these kinds of different models and try to understand, and then start challenging it to realize that it is not dangerous to rest, that nothing super drastic will happen.” [5].
LEAP also acknowledged that CE is driven by more aspects than a drive for thinness. “You get some sort of confirmation that you have other problems (in exercise) than “exercise to lose weight”. It was accepted. There are so many more aspects of exercise that can be negative and difficult when you have an ED”. [9]
Several informants expressed that LEAP provided them with a lot of new information. Some recognized CBT-techniques from their standard treatment but found LEAP more focused on PA. The knowledge and discussions about the factors maintaining CE were novel to most and the activities in relation to these were often experienced as eye-opening.
I found it very interesting and very good with these different maintaining factors, and especially that a lot of time was spent going through all of them. Because that’s probably what I have experienced as most helpful for me in hindsight, that I have gained an understanding that there are several things that keep it going. It’s not just that I have an ED but it can also be due to the fact that I am compulsive or that I am very difficult to let go of my routines, or such things. And I haven’t thought about that at all before, what keeps the behavior going, you know.” [7].
Sharing experiences with others in the group was highly valued. It gave a sense of connection, of not being alone with these difficulties, and of being seen. Individual insights about one’s relationship with PA also increased through group discussions.
“My goals that I have had previously, they are not reasonable, it is not strange that I have not reached them”. [4]
Many informants were surprised that the group discussions were rewarding and experienced as quite easygoing. This spurred reflection even though the group participants had different experiences or opinions.
”It was more fun and sometimes easier to bounce thoughts around specific things related to our EDs even though we may not necessarily agree with each other all the time. It felt more productive at times to have group discussions about such sensitive topics.” [1].
Triggered behaviors
Four informants expressed that LEAP initially triggered an increase in PA because of feeling more anxious, comparing oneself to others in the group, and a sense of having to really delve into it now, to then be able to leave it behind.
“It has been somewhat triggering in a way to hear everyone else’s issues and the feeling that I wasn’t sick enough. At first, it became more triggering before I kind of came to the realization that yes, but I am also ill, but my illness looks different”. [3]
Informants described how this increase in PA started to decline after three to four sessions of LEAP. At that time, they felt more comfortable in the group and dared to talk more openly about their experiences of being triggered. This resulted in a sense of a “new beginning” with a calmer attitude towards PA. Some informants raised that the therapists could have informed them already in the beginning about the potential of triggering processes and social comparison, to reduce their anxiety.
While the group climate could trigger comparison, many felt that it was positive that their difficulties manifested differently within the group, challenging their image of both CE and ED. Just like the initial increase in PA, the comparison also decreased when informants started to feel more comfortable with each other.
Increased awareness in retrospect
Most informants experienced a change in their thoughts and attitudes towards PA a few months after completing LEAP. They described this change as being able to take a step back, understand reactions in their bodies, reflect upon emotions and thoughts, and have a more long-term focus rather than reacting in the moment.
“I actually felt that, when I was there, that it (LEAP) did not give me that much. But then in the end I could see, sort of, that it actually did somehow change my point of view or way of thinking. And that is probably due to the treatment, helping one to discuss and take a step back and observe it.” [6].
Many had also changed their pattern of PA after LEAP, for instance by adding recovery days, taking breaks during training sessions, and lowering their own demands. They also experienced more joy in their activity and had managed to keep it at a less intense level. Learning more about emotion regulation in relation to PA and being able to stay in an emotion and accept it, was mentioned as helpful and created an enhanced awareness about emotions in relation to PA. Several informants highlighted that they had become aware of their own reliance on exercise as a means for regulating negative affect and that this dependence felt unsustainable.
“That dynamic is not fair to me, being dependent on exercise [to decrease anxiety].” [1].
“Later, when the treatment was completed, you may realize that many things have been related to earlier stuff and so on, that it is put in a context. To acquire tools to deal with your emotions in relation to exercise and to stay in it and learn has resulted in me not having the sort of emotional breakdowns in relation to physical activity as often.” [6].
Several informants expressed that ED thoughts and urges to be active remained, though after LEAP they found it easier to resist such urges. They expressed that LEAP had increased their awareness of how their activity was governed by rules and that this opened for a possibility to start reducing the control and attempt to engage in recovery and joyful exercise, for increased well-being. LEAP also seemed to increase the informants’ awareness about the function of PA and the importance of listening to bodily signals, even though that was experienced as immensely difficult.
“By and large, it [LEAP] has changed my relationship to exercise. Exercise should still be something I can enjoy, something I like because that is really why I work out. I have now calmed down, I try to see it from a different perspective, what is my body capable of now, and I tune in much more. So I am probably a bit more accepting, even though I think this acceptance is one of the hardest things.” [1].
Many informants experienced LEAP as valuable and useful, and added that they see a need for it to be further developed and become more widespread.
” I needed these strategies to be able to exercise in a healthier way. I wouldn’t have been able to start exercising if I hadn’t joined LEAP, I think I had remained in the worse condition. I think it’s really important with LEAP. It needs to start on a large scale [within ED care].” [6].
When and how matters
This theme describes the structure of LEAP and when LEAP should be conducted during ED treatment time.
Treatment design
The informants experienced LEAP and its components as concrete, informative, and leading to results with no content missing. Most experienced the sessions of 60 min as too short and wished to double the time to finish tasks and have time for more in-depth discussions of the topics/subjects.
“I think they covered good topics, but then these sessions were so short, it was only an hour, so we sort of never had the time to really go in deep.” [5].
The behavioral experiment was experienced as a valuable concept, that the informants were happy to continue to work with after LEAP. However, more time and support would have been appreciated and beneficial during the sessions.
” I found it difficult to come up with a challenge that was just right and not too easy and then “is the purpose to be able to take the bus or is the purpose to feel that it’s okay to take the bus?”. That there are many steps involved. And that we didn´t really have time to talk it through.” [7].
Everybody participated in small groups with two, four or five participants, and all agreed that a small group was preferable for everybody to be able to speak up. However, some thought that two participants were too few to share perspectives. Regardless of the number of group participants, the time per session was perceived as scanty, but in the end, when the intervention gained context, the treatment was experienced as extensive enough. Some reflected that although longer sessions could potentially be helpful, they might end up being tiring. Shorter sessions might also facilitate participation.
“It might be easier to implement change if it is more compressed. And if you do other things, like studying, it might be harder to make time for things that last a long time”. [9]
A couple of informants wished for LEAP to be spread out over a longer period by having sessions once a week, to have more time to apply techniques between sessions. “You would try to apply it to yourself, but it felt like you didn’t quite have time” [5]. However, there were perceived advantages of an intensive treatment, as the informants did not lose focus in between sessions or had to wait too long if they felt they needed assistance. As an alternative to extending LEAP, a booster session was suggested two weeks after the intervention, to for instance follow-up on the behavioral challenges.
“Of course, there are pros and cons. If the sessions are too far between, you kind of have time to forget. That’s the advantage of having it a little more intensive, that you really keep momentum in the process, and that you can also get help if you get stuck.” [8].
It was perceived as a good balance that the group was led by a psychologist and a physiotherapist, the latter to provide more specific knowledge about PA. Several informants would have liked individual advice about PA. Most, but not all, were further positive towards complementing LEAP with PA in a clinician-led group, as a potential opportunity to learn more about and to resume healthy and adequate PA, preferably after weight recovery. Such PA was believed to potentially contribute to a shift of focus and improved body awareness and acceptance: “To shift the focus from it being exercise, to maybe learn to listen to the body in some way” [3]. The informants did see a risk of comparison, but most thought positive group effects, such as a sense of community, would outweigh that risk, given that participation was voluntary.
Timing
The informants had been in their standard treatment for at least three to four months prior to LEAP, but most around six months. All agreed that LEAP seems best suited in the final phase of standard treatment, after having gained certain insights, a more flexible mindset, feeling more comfortable in the group setting and being more receptive to change. “If I had been in the LEAP-study at the very beginning of my treatment, I don’t think I would have gotten these insights.” [1].
With earlier LEAP initiation, some speculated that the overall ED issues might have overshadowed the specific CE focus. However, others found it potentially helpful earlier on, especially when PA was tightly connected to their mindset around food. Even so, many thought that LEAP fitted better later in treatment when everyday life had begun to normalize, to be better able to apply strategies, home tasks, and behavioral challenges. It also seemed beneficial to engage in some kind of PA during LEAP, as it otherwise can be difficult to remember thoughts and feelings connected with PA.
“I would have been a little bit more helped by it [LEAP] even a little further on, now that I feel that, as I said, I am a little more flexible. If you haven’t exercised for a very long time, you might not really remember exactly how you thought and felt when you did exercise.” [5].
LEAP also matched the final phase of standard treatment when leisure interests are usually integrated, as PA had been a leisure interest for most since a young age. It also felt natural to end ED treatment with LEAP “to then sort of be. set free.” [4].
LEAP was perceived as a helpful complement to standard ED treatment and vice versa, although having both in parallel could be somewhat intense. There were however requests for LEAP to be better integrated with the standard treatment, by having a focus on PA also in standard treatment during and after the LEAP period.
“So you don’t forget, you might need more support to apply it according to your own needs. That the therapist has it (PA) as a part of your treatment plan, to follow up.” [9].
Potential improvements of LEAP through the patients’ perspective
Aggregated potential improvements to LEAP found in the accounts of the informants are summarized below in Table 1.
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