In total, the models contained 5468 concepts. The thematic map was based on 4908 (90%) of these concepts. The remainder of the concepts (560; 10% of total) were not included in further analysis because they could not be meaningfully interpreted.

Out of the 4908 included concepts, 4272 (87%) were completely patient-specific, meaning that they were mentioned by only one single patient, 481 (10%) concepts were mentioned more than once but less than five times, and 155 (3%) concepts were mentioned five times or more. The most common concept was “anxiety”, which was mentioned by 17.8% of all patients. Figure 2 contains a subset of the frequency distribution with only the 20 most often mentioned concepts.

Number of ISMs (frequency) in which each concept was mentioned at least once, displaying the top 20 most often mentioned concepts ordered by rank, with the percentage of all ISMs at the top of each bar. Note that certainty and safety are both related to the meaning of sicherheit in German and are therefore both retained in the English translation

Seven main themes were constructed from the data (Fig. 3). Each theme is discussed below. Short examples, presented between quotation marks, are provided to illustrate its meaning. Subthemes are written in italics. A detailed, interactive figure of the thematic map including all underlying subthemes and concepts can be found at the open science framework [https://osf.io/afc7b/; DOI: https://doi.org/10.17605/OSF.IO/AFC7B].

Schematic overview of thematic map including the main themes and first order subthemes. The first order subthemes describe the first layer of grouped concepts below the seven main themes. The size of the seven themes is chosen for readability and has no relation to the number of underlying concepts

The theme autonomy is characterized by four subthemes. First, patients wanted freedom to act as they desired, being independent from others, and actively enjoying the freedom they achieved. Second, patients sought more sovereignty over their lives. They wanted “to be the captain on the ship” of their own life and to be able to stand up for themselves, e.g. “defend myself”, as well as restoring volition, e.g. “make autonomous decisions”. Third, patients included concepts related to control, either having a need for control, e.g. “want to control”, or letting go of control, e.g. “give up control”. Finally, patients sought to differentiate themselves from others, for example by defending their limits, e.g. “say stop”, or demarcating themselves, e.g. “can differentiate oneself well”.

The theme connectedness reflects the degree to which patients perceived themselves as part of a group. Three subthemes were identified. First, the experience of belongingness subtheme contained both a positive (feel like I belong) and a negative (do not feel like I belong) formulation. For the positive side, patients mentioned concepts related to giving or receiving support, e.g. “take care of others”, as well as feeling accepted by, in contact with and close to others. Patients sometimes did not feel like they belonged to the group, e.g. “being the outsider”, because they felt lonely or were actively rejected by others, e.g. “feel refused”. Second, the need to belong, reflecting the desire to be part of a group, was mentioned by patients. Patients had a strong desire for loving relationships in which they experienced affection and attachment, e.g. “seeking to be loved”. They wanted to be recognized, e.g. “feel seen”, and appreciated, e.g. “experience appreciation”, and mentioned pleasing others as a potential strategy to gain such appreciation, e.g. “please everyone”. Third, the subtheme relationships reflects both with whom the patient has relationships, e.g. family and friends, as well as the quality of those relationships, e.g. “secure relationship”. As another aspect of relationships, patients mentioned the skills employed to regulate their relationships such as “listen carefully” and “communication”.

The theme emotions consists of two subthemes. Due to the similarity between emotions and feelings in everyday meaning, we grouped them together under emotions. Patients mentioned several experienced emotions, which were categorized as being positive or negative, and being high or low in arousal. Examples of high arousal positive emotions were joy, excitement, and happiness, whereas examples of low arousal positive emotions were satisfaction, ease, and lightness. High arousal negative emotions were characterized by anger, anxiety, fear, and pain, whereas the low arousal negative emotions focused on grief, guilt, emptiness, and sadness. Besides experienced emotions, patients mentioned their emotion regulation abilities. First, patients mentioned their ability to perceive their emotions, they wanted to gain “access to my own feelings”. However, it was also mentioned that this access was not always there, given that some patients experienced a lack of perception of their emotions. Second, whilst some patients stated that they suppressed their emotions, many sought acceptance, e.g. “allow feelings”. They wanted to “give space to emotions” and trust, e.g. “trust in my feelings”, and endure them, e.g. “enduring uncomfortable feelings”. Third, patients desired to share their emotions with others. This took the form of communicating them to others, e.g. “communicating emotions”, as well as expressing them directly by showing the experienced emotions, e.g. “show my fear to the outside”. Some patients in contrast stated that they covered their emotions and kept them inside, e.g. “not allowed to express pain”. Finally, various other emotion regulation strategies were mentioned by the patients such as down-regulating, withdrawing, ruminating, or reacting more cautiously to their emotions.

The theme self-care can be divided into five subthemes. First, patients had to deal with their needs in a constructive way. To do so, patients wanted to enhance the perception of their own needs, e.g. “see my needs”, as well as communicate them to others, e.g. “express my needs”, and finally take better care of these needs, e.g. “respond to my needs”. Second, patients mentioned bodily self-care, e.g. “to take care of my body”. By living a healthier lifestyle, e.g. “get healthy and fit” and exercising more often, e.g. “do more sports”, they wanted to enhance physical health. Furthermore, they wanted to trust, e.g. “trust in my body”, and accept their body more, e.g. “acceptance of your own body”, and listen to it, e.g. “pay attention to body feedback”. Third, patients included mental self-care. Growing a loving, e.g. “be loving with me”, accepting, e.g. “I am good the way I am”, and kind, e.g. “be nice to myself”, attitude towards their own self was relevant for many patients. Also, patients sought ways to better understand themselves, e.g. “understand me better”, feel in contact with themselves, e.g. “keep in touch with me” and feel protected and safe, e.g. “feel safe in me again”. The fourth subtheme of self-care was finding serenity. This means that patients sometimes wanted to “take time for myself”, seeking an accepting, e.g. “it may be as it is”, balanced, e.g. “find balance”, and peaceful, e.g. “in peace with me”, state of mind, allowing them to be “in the here and now”. Finally, patients mentioned self-negligence in that they undervalued, e.g. “nobody likes me”, neglected, e.g. “don’t pay attention to me”, or harmed themselves, e.g. “self-destruction”.

The theme identity contains five subthemes. Many patients mentioned their character traits such as perfectionism, courage, curiosity and openness. Additionally, patients included their perspective on life in their models, which consists of the direction of their focus, e.g. “focus on suffering”, the broadening of perspective, e.g. “step out of my usual frame of reference”, but also their general worldview, e.g. “realist” and experienced trust, e.g. “trust in life”. Besides this, patients also named the desire to know who they are by e.g. “find[ing] out who I am and what I like”, and developing themselves further by e.g. “find[ing] the right place to grow” or by “develop[ing] goals”. Finally, the identity of the patients contained the private and professional life of patients. The private life entailed hobbies such as “making music” and “painting”. The professional life consists of patients’ desire to make job related changes, e.g. “courage to change professionally” and to be satisfied with their job, e.g. “joy in work”.

The theme self-efficacy reflects the believe patients have in their ability to reach desired goals and contains four subthemes. First, a fundamental part of experiencing self-efficacy formed the believe patients had in themselves. They wanted to regain their self-confidence, e.g. “I can do this”, and trust in themselves, e.g. “trust my skills”, feeling that “[I] can shape my life”. Second, patients mentioned the strength they have to move towards their desired goals, e.g. “I am strong”, whilst simultaneously being aware of the limits of their energy, e.g. “recharge battery”. Third, patients mentioned motivation and perseverance, such as having a performance orientation, e.g. “want to be the best”, as well as feeling pressured to fulfil expectations, e.g. “pressure to work”. Also, they mentioned their desire to come into action, e.g. “get going”, and persevere once they did so, e.g. “keep going”. Finally, patients mentioned their competence and both the absence, e.g. “helplessness”, and presence, e.g. “ability to convey” of it.

The final theme is bodily sensations and contains descriptions of bodily states such as freezing, e.g. “be frozen”, and tension, e.g. “body tension”. Patients also mentioned bodily sensations located in specific parts of their body, such as headaches, tinnitus and heart symptoms. Finally, patients also mentioned concepts that influenced their physiological regulation, such as eating, e.g. “binge eating”, sleeping, e.g. “sleep disorder”, and substance use, e.g. “alcohol”.

Last, we explored to which extent the codes that were grouped under the main themes were featured in the different ISMs. We found that codes grouped under autonomy were present in 65% of the ISMs, for the other themes this was: connectedness [81%], emotions [94%], self-care [97%], identity [86%], self-efficacy [81%] and bodily sensations [34%].