This study explored how 26 young adults with lived experience of NSSI perceived the treatment they received as adolescents. Most participants no longer engaged in NSSI at the time of the interviews. The interviews were analyzed with thematic analysis and resulted in three overarching themes: Changed perceptions in retrospect, The Importance of a Collaborative Conceptualization, and Lasting impression of the relationship. In general, participants experienced a change in perspective of themselves and the treatment, with a deeper understanding of the processes over time. Further, the importance of agreeing and being included in treatment planning was emphasized. The relationship to the healthcare professional and the way in which the healthcare professional talked about NSSI made a strong impression and was salient several years later.

The first theme pinpointed participants’ change of perspective with the passing of time, when looking in the rear-view mirror at their experiences as adolescents. The change reflected in this theme covered processes related to themselves, their NSSI and previous life context, as well as the treatment. Several participants reported that during adolescence, when they were still actively engaging in NSSI, they had negative perceptions of themselves and the treatment, but that they had gained a more nuanced perspective with time.

Participants mentioned being very self-critical during their adolescent years, and also experienced anger and criticism toward healthcare, doubting both their own and healthcare’s ability to deal with their life situation. It is known that self-criticism is associated with NSSI [26], and self-punishment is a commonly endorsed function of NSSI [10]. That NSSI decreased with age is in line with earlier research [3]. In the current study, participants reported that the negative perspective of self also decreased as they got older and were no longer actively engaging in NSSI. Participants reflected on how their own developmental processes during adolescence and mind-set at the time influenced how susceptible they were to interventions. Some participants also touched on issues related to identity formation, which is a critical developmental task during adolescence. Gandhi et al. [45], for example, previously showed a bidirectional relationship between NSSI and identity in a longitudinal study of adolescents, with identity confusion predicting NSSI and vice versa. An earlier systematic review [27] found that individuals with NSSI were in an ongoing process of constructing and negotiating their identity as patients with NSSI. Results from the current study also confirm that this process is ongoing and active from adolescence to young adulthood. Except for one previous study [34], where individuals were interviewed about their experiences of inpatient child and psychiatric healthcare 15 years earlier, most other qualitative studies that explore participants’ experience of healthcare in relation to self-injury do so in closer proximity to the healthcare contact. Our study encompasses the aspect of time, which makes it possible to understand changes of perspective that come with time.

Some participants reported that their motivation was lacking or fluctuating when they were in treatment. This is not uncommon in NSSI cessation processes [31], and NSSI cessation is best understood as a non-linear process with setbacks and fluctuating motivation [32]. NSSI serves several functions [10] and helps individuals to cope with life stress and challenges, which need to be considered when treating NSSI [31]. Several participants in our study could give several reasons to cease NSSI, which they could not do earlier, and described what Vansteenkiste et al. [31] refer to as a lack of internal motivation during the adolescent years.

It is not uncommon that people other than the person with lived experience of NSSI, such as parents, teachers, and clinicians, argue that NSSI needs to stop immediately and therefore focus on problem-solving, emphasizing change at the expense of understanding, validation and acceptance [32]. It is often difficult for parents and healthcare professionals not to force change toward cessation, since NSSI most often is conceptualized as a dangerous and potentially life-threatening behavior [31]. Individuals with NSSI thus often experience external pressure and control from others to cease NSSI, which can restrict autonomy and ultimately aggravate NSSI [46].

The three sub-themes under the main theme interpreted as The Importance of a Collaborative Conceptualization all relate to the experience of treatment. The common thread was the agreement-disagreement continuum which was conceptualized as a central part of how the treatment was perceived. Participants who had experience of mental health professionals or therapists who overtly expressed and included participants in the conceptualization of NSSI, and where the goals and focus were agreed upon, were most satisfied with the treatment content. Participants that had taken part in a structured treatment, such as DBT or emotion regulation skills training, were generally more positive. Specific aspects that were appreciated were focusing on emotions, chain analyses of emotions and NSSI and strategies for regulating emotions and coping with NSSI. These are modules that are recommended and incorporated in modern treatments of NSSI [15, 16].

In cases where therapists and participants had different views, mainly on whether NSSI should be targeted in its own right or be viewed as a symptom of some underlying issue or problem, and when this disagreement was not negotiated and discussed explicitly, participants were more negative to the content of treatment. Such lack of communication has been problematized in treatment of self-harm, irrespective of intent, in an earlier systematic review [33], despite adolescents specifically requesting collaboration and open communication [37]. Participants’ preferences for focus differed: some wanted more explicit focus on NSSI, whereas others sought more focus on underlying mental health concerns or life circumstances. The common theme was that treatment focus needed to be discussed and agreed upon jointly, and a lack thereof influenced perception of healthcare.

Agreement on treatment goals and tasks in an atmosphere of collaboration is the ground for a constructive treatment alliance [47]. When patients in general describe what is important for them, shared directionality is a recurrent issue [48]. It is important that the goals are personal [49], and that therapist and patient together identify and clarify obstacles for change [50]. In order to achieve agreement, goals and tasks need to be negotiated. Therapist sensitivity about patients’ unformulated or vague goals and expectations is essential [51].

Earlier qualitative work [39] emphasizes the need to broaden the perspective to include overall health and functioning, and that too much focus on NSSI as a marker of distress is neither appreciated nor meaningful. In the current study, some participants confirmed this perspective whilst others wanted to focus on NSSI and experienced that NSSI was left out of treatment. In clinical samples, NSSI occurs together with different diagnoses [6] and serves several functions [9, 10]. Given the heterogeneity of the NSSI population, it is reasonable that needs and preferences differ, but open communication and joint decision-making on what to target were emphasized and improved perceptions of treatment content.

Several participants described not remembering if and what treatment they had received and that the adolescent years with mental health problems and NSSI were a blur. There are no robust findings of differences in working memory in participants with NSSI compared to healthy controls [52, 53]. Common comorbid conditions such as neurodevelopmental disorders, trauma or depression are, however, known to impact attention and memory [54, 55].

In addition to being included in the conceptualization of NSSI and jointly agreeing on the focus and goals of treatment, the relationship to the mental health professional was another important factor that influenced how treatment was perceived by participants. Participants’ recollection of encounters with healthcare professionals’ attitudes and communication style was still highly salient, even though several years had passed.

The general importance of the therapeutic relationship in treatment and psychotherapy research has been consistently found in earlier research [56, 57], and also specifically in relation to NSSI [27, 35, 36, 38]. Studies of alliance building underline that confidence in the treatment as well as confidence in the therapist are basic aspects of a constructive therapeutic relationship [58, 59].

In the current study, positive experiences were identified, such as being listened to, taken seriously, understood, and not judged, together with negative experiences of being invalidated and misunderstood. Participants in earlier studies have emphasized the impact of the human contact in treating self-harm, irrespective of intent, and that practitioners generally underestimate the importance of the relationship [29].

Applying a problem-solving perspective too early in the treatment process was not uncommon and was mainly perceived as invalidating by participants. This included an extensive focus on getting rid of NSSI and receiving suggestions for replacing the behavior with other less harmful behaviors, such as drawing on skin. Such so-called harm-minimizing strategies, mainly sensation or process proxies, using elastic bands or drawing on skin have little empirical support, and are also mostly perceived by young people with self-harm to be ineffective [60], and thus need to be used with caution. Other non-optimal clinician approaches were minimizing and dismissive comments. This is not uncommon and confirms earlier studies of self-harm, irrespective of intent [29]. Also, too much focus on NSSI frequency as a proxy for well-being, resulted in participants feeling misunderstood. Frequency of NSSI does not necessarily correlate with mental health or need of help [39]. Having the injuries labeled with judgmental language, such as “that wasn’t that bad”, was perceived as hurtful and risks individuals needing to turn up the volume or frequency of NSSI to be taken seriously [27, 39].

Participants also emphasized the role of shame in relation to NSSI and that they needed time to build trust to disclose NSSI, which was not always possible in the CAP setting. Challenges related to inadequate number of sessions and abrupt termination of treatment have been described earlier in relation to self-harm, irrespective of intent [35]. Also, confidentiality, and breach of confidentiality in relation to NSSI, needs special consideration and is a recurrent issue for adolescents, both in the current study of NSSI and self-harm, irrespective of intent [38].

All participants were assigned female sex at birth. More research of healthcare experiences is needed with males and ethnically diverse samples. Every participant had experiences from CAP and it is this treatment that is referred to in the current study. Results are thus not transferable to males or all treatment settings. A majority of participants were no longer engaging in NSSI. Furthermore, they were in different phases toward recovery of NSSI and other mental health problems, which potentially could influence how earlier treatment during adolescence was perceived. The background of the researchers involved could potentially influence the analysis. Interviews were conducted by two licensed female psychologists (HA, MZ) with experience of CAP and treating NSSI. Analyses were conducted by three females (HA, ES, MZ) and two males (RH, AM), with varying ages and experience of clinical work and research, however, which contributes to minimizing bias in interpretation of data.

The lived experiences of participants with NSSI who have been in contact with CAP during adolescence have several important implications for clinicians. It is important to embark on the journey of assessment and treatment of NSSI collaboratively and include the perspective of the adolescent. The conceptualization of NSSI, and agreement on focus, goals and methods that guide treatment, need to be negotiated openly together. It is striking how seldom adolescents expressed their dissatisfaction directly to the healthcare professional. Staff therefore need to be mindful of this and initiate ongoing discussions about adolescents’ thoughts and feelings related to the treatment and the relationship. It is also important that they become aware of and address conflicts and ruptures in the treatment alliance. Such attention may not only prevent premature termination, but also has the potential to improve adolescents’ competence for interpersonal conflicts [61]. The actual focus and content can differ and should be individualized. Furthermore, adolescents need clarity in aspects such as treatment length and plans for termination, where continuity is preferred. Clarity concerning breach of secrecy, such as when parents need to be contacted, is also essential.

It is also important that clinicians take into account that adolescents with NSSI in a clinical setting might be suffering from impaired attention and memory, and therefore clinicians need to also rely on written material and summarize therapeutic work in writing.

Furthermore, relationship variables such as kindness, warmth, empathy and validation, and a non-stigmatizing communication style are crucial components and have a large impact on how treatment is perceived. Being too quick to problem-solve, and excessively focusing on the need to stop NSSI can potentially communicate that the problem is less complex than it actually is and can therefore be perceived as invalidating and dismissive. Also, minimizing comments such as “that wasn’t too bad” were not perceived as helpful, and a more descriptive language is preferred. Knowledge about the complexity of NSSI is needed for professionals that come in contact with NSSI. It is often more effective to promote internal motivation to change based on understanding, validation, and empathy and to avoid limit-setting, rules, and bans. Cessation processes can seldom be rushed and take time.