In the present study, we identified four themes from the interviews with professionals in relation to the barriers experienced in the transition process by patients with AN and by the varied professionals: (1) Different treatment cultures describe how mental health professionals experienced differences in how to involve parents and expectations for patients’ with AN’s autonomy and responsibility; (2) mistrust between CAMHS and AMHS describes the attitudes between CAMHS and AMHS; (3) clinicians` factors describe the level of competence, security, and confidence experienced by the professionals; and (4) lack of trust between services and not enough focus on building a new alliance in AMHS negatively influences the transition.
Different treatment cultures
The professionals consistently emphasized the difference in treatment cultures between CAMHS and AMHS. The difference is related to the differing involvement of family members and the way patients with AN are expected to take more responsibility for their own health in AMHS than in CAMHS.
Involvement of parents
In CAMHS, parents are recognized as an important part of patients’ recovery process. In the focus group, professionals stated, “In CAMHS, the parents are involved from the first meeting.” Some AMHS professionals described fewer resources and less time to involve parents in the treatment process. Moreover, the AMHS professionals found it difficult to prioritize collaboration with parents, and often felt insecure about how to use information provided by parents. A consequence could be that patients’ parents feel less listened to and lose trust in the mental health care system. AMHS professionals acknowledged the benefits of family involvement, and were aware of treatment guidelines, but they found it difficult to implement them in practice. This is often “due to treatment culture and resources,” as one professional in the focus group said. Family members were described as often unprepared for the change of roles in AMHS versus CAMHS. After patients turn 18, they often choose not to involve their parents in treatment. AMHS professionals found this inadvisable and indicated that they want to facilitate interaction between patients and parents. One professional stated, “I try to encourage the patient to include the parents.” AMHS clinicians wanted to involve parents when it is important and appropriate. However, “when you are turning 18 years of age, maybe it is good for you not to be that close with your parents,” as one professional in the focus group said. The professionals understood that being a parent is challenging. However, they described no focus and guidance for how to prepare parents for the transition: “We have experienced that the parents don’t manage and back off,” a professional said.
Patients’ responsibility and autonomy
The professionals described that the patient’s age (18 years) normally defines whether patients should be treated in CAHMS or AHMS. According to the professionals, patients are expected to be more responsible for their own health and treatment when they are 18 years old. When transferring patients from CAMHS to AHMS, the professionals emphasized the importance of the patients’ level of maturity and readiness for treatment in AMHS: “The adolescent’s age is around 16–17 years when [they are] finished in CAMHS. You cannot just define that you are old enough and well enough to be an adult, because many are not.” They described it as natural to give patients a higher degree of responsibility for their own health in AMHS. However, the culture difference between how CAMHS and AMHS presume patient self-sufficiency is a hindrance during the transition process. In addition, AMHS traditionally have fewer resources to follow up with patients, as one professional described: “We are very dependent on cooperation with the patients. I think that—the responsibility we put on the patient with AN - feels overwhelming in the transition period.” Although the professionals had examples of good transitions, they consistently described a lack of systematic follow-up and ability to assess individual needs during the transition process. Moreover, the professionals often experienced patients’ ambivalence regarding treatment. Too much responsibility too soon often resulted in relapse. The professionals in the focus group emphasized the importance of being aware of patients’ ambivalence to treatment as a symptom of the AN disorder. CAMHS spend a lot of time trying to motivate patients to continue treatment in AHMS. A therapist stated, “Many have to reflect on how the anorexic patient relates to concepts like autonomy and voluntary treatment—cause many anorexic patients just want to be left alone with their symptoms.”
Mistrust between CAMHS and AMHS
Although CAMHS and AMHS collaborate and work together during the transition process, CAMHS professionals described transferring patients as difficult. CAMHS professionals are unaware of what kind of care the patients with AN will receive when they enter AMHS. Disregarding the CAMHS long relationship with the patient, professionals in AMHS make their own assessment of the patients when entering AMHS. From the CAMHS` professional’s perspective, it can be difficult to refer a patient you have worked with for a long time to a system you do not trust. “We as a system don’t play on the same team. It is a lack of trust between us.” One CAMHS professional described: “When I asked if I could talk to someone in the evaluation team, they answered that I have to submit a referral. Many do not discuss matters in advance.” CAMHS professionals described a focus on ending the therapeutic relationship rather than transitioning patients to AMHS. This closure was mainly due to a lack of knowledge of what they could expect from the AMHS concerning treatment.
The professionals experienced a lack of mutual understanding of each other’s systems and ideologies of treatment: “They called me from CAMHS, and I could feel they thought—that poor girl who is gone over to the wolves in AMHS.” This makes the establishment of a therapeutic relationship more difficult for AMHS clinician. As they put it: “Maybe it would be easier if CAMHS had prepared them for what is to come instead of give out uncertainty and you poor little one.” From the AMHS perspective, the professional described it as if CAMHS providers often were mothering the patient with AN, and did not give the patients responsibility for their own lives and health, for example concerning eating or follow up treatment.
Some professionals described that CAHMS and AHMS clinicians have different treatment approaches. CAMHS clinicians focus on meeting patients with a holistic approach and flexibility to compensate for the patients’ lack of function and motivation. AMHS clinicians described a stricter diagnostic focus, and they emphasized the patient’s own motivation and responsibility for recovery from their AN. In AHMS, patients’ individual freedom seems to be the focus. Consequently, patients become more in charge of their own life and health. A professional stated, “CAMHS want to work from a more contextual approach while AMHS have a more rigid medical understanding.” If the patients are too ill and do not follow up with treatment appointments (or are not motivated enough), they are discharged: “So, if they don’t meet for appointments, they are discharged, and (the patients) experience that they aren’t acknowledged by the professional. So, the system could be a factor in obtaining and amplify the symptoms.”
When treating patients with AN, professionals experience a need for competence on many levels. However, despite having this competence, clinicians can find it difficult to trust themselves. This lack of confidence has a negative effect on patients’ transition from CAMHS to AMHS.
Due to the complexity of treating patients with AN, the professionals described a need for a high level of competence. They need to be highly skilled in building relationships and in different aspects of having AN: “These adolescents are so sick and have complicated comorbid conditions.” The professionals described how they felt their personal attitudes influenced patients’ motivation for treatment and hope for recovery. They emphasized that they had to be present, understanding and use sensible formulations not to be perceived as dismissive. Additionally, they had to communicate their competence and clinical skills to the patients.
Furthermore, the professionals described patients with AN as sensitive and in need of a close relationship with a competent therapist. Patients are often left with a sense of being too difficult: “Adolescents are concerned with what and how we can help them. We have to be ‘in the same boat’ and show them that we care.”
Clinicians` feelings of security
The professionals described it as difficult to believe in their own competence in meeting the needs of patients with AN. The professionals often felt a need for support and supervision to have confidence in their own decisions, to provide patients with the level of security they need. The professionals had experienced colleagues who claimed feeling incompetent during the transition period (“I have no knowledge about this”) and found that easy to understand. The professionals were also influenced by patients’ behavior and attitudes. AMHS professionals experienced that patients and parents have high expectations for treatment, much higher than the professionals have the capacity to fulfill. This influences the way patients are met during the transition period: “My experience is that these patients have so pronounced expectations combined with their own uncertainty that it’s easy to get insecure as a therapist.” A professional said, “I have more experience helping AMHS clinicians with feeling confident and able to manage the pressure from the patients. Just by saying that they do a good job, they calm down.”
Professionals, based on their experiences, think that the patients need proof that they really care for them. Some patients even feel a need to test the professionals to see if they really care. This was described as challenging by the professionals: “This is a group of patients that is challenging to work with. They have a grip on you, and, sometimes, I go home and think to myself, when am I going to be finished with this one?” They described some degree of anxiety about when patients undergo a bad period and/or reject the treatment offered. A consequence is that the patients can be discharged too soon and maintain their destructive way of living: “A patient once said to me, ‘Do you know why I got ill again? Cause they stopped treating me, and I wanted to get back to my therapist.” The professionals emphasized that in mental health care units, nurses and doctors have basic knowledge about treatment of AN due to their profession. Still, it can be difficult for them to rely on their own expertise, and they often want to transfer patients to specialized eating disorder treatment units.
Transfer of alliance
The professionals experienced that there is a lack of transfer of alliance and trust between systems, clinicians, and the patients. The professionals assessed the change in clinicians as an important element in the transition, because patients are especially vulnerable to changes in close relationships. This factor complicates the transfer for an unsure, ambivalent patient with AN: “We don’t manage the transfer of therapeutic alliance and level of trust the adolescent needs.” To try to compensate for this lack of a safe meeting point in the transition to AMHS, the school nurse or someone the patient relies on in CAMHS makes a connection with AMHS: “We often make a phone call to inform AMHS what the essential problem is, because patients view AMHS’ approach as scary.” The professionals experienced that patients have to elaborate their story several times during the transition, which has a negative impact on the patients’ motivation for treatment. CAMHS and school nurses try to bridge the information flow, but more often than not, the patients have to elaborate anyway.
The professionals described that it seems difficult for the patients to start therapy in AMHS. It appears difficult to achieve a good therapeutic relationship, as the patients easily feel rejected. The consequence is often that patients drop out of treatment, “and they end up back with us and the GP,” as a school nurse said.
The professionals experienced that the patients have a pressing need to be acknowledged, and it is important for them to feel perceived for more than their eating disorder. When the patients are given a treatment plan that does not meet their expectations, they feel rejected: “They are often met with ‘now we have ten sessions`—and when they know that, this approach don’t meet their needs for more long-term therapy.” The experience is that many patients drop out of treatment and relapse.