I’m not a diagnosis: Adolescents’ perspectives on user participation and shared decision-making in mental healthcare

This is a qualitative exploratory study in a Norwegian public healthcare setting. Two youth co-researchers participated in designing the study, the information sheets, and a semi-structured interview guide. The co-researchers had experience from similar healthcare services and were involved throughout the study (24). The study took place at two public hospitals in western Norway, at four CAMHS units within these hospitals. These CAMHS clinics provide treatment for adolescents 13 to 18 years of age with severe mental health disorders such as psychosis and suicidality. Three of the clinics have acute admissions, but also provide elective treatment. One clinic offers long-term treatment with rehabilitation for adolescents age 16 and older with psychotic disorders.

We used purposive sampling to recruit adolescents admitted to and receiving treatment in the CAMHS inpatient units. The participants had to be 16 to 18 years of age, speak Norwegian, and capable of giving consent. Selection of participants was not limited to specific diagnoses. The chief physician or psychologist made the inclusion assessments, and invitations to participate were handed out by the staff (e.g. nurses). The sample size was estimated at between 10 and 15 participants a priori.

Ten adolescents (eight females and two males) participated in the study (mean age 16.5). The sample covered both voluntary and involuntary treatment. Some participants had experience from several health services and admissions, and others had just recently made their first contact with mental healthcare services. We did not collect diagnostic data from medical records. However, most participants voluntarily shared details about their mental health problems and background. The diagnoses that they gave, in addition to suicidal intentions and self-harm are provided in Table 1.

Data were collected using individual in-depth interviews. The interview guide builds on key principles of person-centered care: valuing people, autonomy, experiences, relationships, and environment (25). To explore participants’ experiences with user participation and shared decision-making we asked questions about their expectations of treatment and involvement, the collaboration with therapists and staff, the treatment and opportunities to influence, involvement of family, and the adolescents view on forms and degrees of their participation in the clinic. A panel of five adolescents from a mental healthcare service user organization pilot-tested the interview guide. The questions were modified based on their feedback. All interviews were conducted by the first author (SB) from 1 January 2018 to 19 February 2020. Interviews lasted from 39 to 72 minutes, averaging 47 minutes. The interviews were audio-recorded and verbatim transcribed. After seven interviews, the data was reviewed. All authors read and discussed the transcribed interviews and agreed that they reflected a range of experiences representing the research topic. To ensure the data was sufficiently rich, we carried out three additional interviews (26).

When data collection was completed, interview transcripts were analyzed using qualitative content analysis. We used a six-stage method described by Lindseth and Norberg (27): 1) naive reading to understand the phenomenon; 2) starting a thematic, structural analysis by dividing the text into meaning units; 3) condensing and sorting the meaning units; 4) abstraction of condensed text to sub-themes; 5) establishing themes in a theoretical context, and 6) validating the themes against the original text. The first author transcribed and read all the interview transcripts to become familiar with the data, and then closely making notes of emerging themes. The two other authors (MS and TG) read the transcripts independently, and then all three met to discuss and identify sub-themes. Condensates were organized into these sub-themes. We then discussed the preliminary thematic structure and reached an agreement on themes. Stages 1 to 5 are illustrated in Table 2. In stage 6, the themes were adjusted to make sure they reflected the meaning of lived experience and the essence in the original text (27). The condensates and themes were presented and discussed with the youth co-researcher. By identifying sub-themes independently, involving experienced youth, and arriving at agreement in analysis meetings, we compensated for any possible bias.

All participants gave written informed consent. No sensitive information about the participants was exchanged with the healthcare professionals, and participation had no consequences for the treatment the adolescents received. To make sure the treatment staff were not involved beyond handing out the invitations, the participants returned their consent to participate to a secretary. The participants were also provided with the opportunity to contact the researchers directly by e-mail or mobile phone. The interviews were carried out by the first author, who has experience in conversation and therapy with youth. The researchers had no relationships with the participants, and none of the staff where present during the interviews. The interviews were conducted in the patients’ room or an office outside the ward, according to the adolescent’s preferences. The involvement of youth co-researchers in the study helped to safeguard the participants’ interests and provide an understandable language. The study was approved by the Norwegian ethics committee (reference number 2017/1195) and by the hospitals’ internal approval forums.

The participants cited trust as the basic and most crucial element of their treatment. Mutual trust between the therapist and the adolescent was essential for the adolescents to feel secure, recognized, and to speak freely. Thus, trust was described as a prerequisite for shared decision-making. The adolescents’ trust in the therapists was established when they felt the therapist was present, listening and showed that they “really” cared about them. To be accommodating, to use humor, and to dare to act personally were used as examples. One adolescent advised therapists on how to establish a trusting relationship:

Equally important was the therapists’ trust in the adolescents. The experience of being believed, no matter what, was emphasized in several interviews. Otherwise, the therapists drew their conclusions without the adolescents’ participation. One participant described the experience of not being believed as so traumatizing that she fled the inpatient unit and jumped from a bridge. It was only after this desperate action, she said, that she was taken seriously. Another youth described the relationship between trust and shared decision-making:

Those who described good experiences with user participation referred to being included. As a result, the treatment was perceived as appropriate. The trust was linked to some therapists at the clinic. The interviewed participants emphasized that it was important to be part of the decisions regarding the assignment of their treatment team. However, most of the participants said that therapists were randomly assigned without consultation with them. One youth expressed her frustration that she had been stuck with a contact person that she could not stand for almost five months. It was suggested that all clinics should have one designated person who would talk to the patient about the expectations of the therapist, and then figure out who was the best fit.

The participants reported a lack of knowledge and information about their treatment. As a result, they experienced admissions to inpatient care as entering the unknown. The admissions and decisions made along the way could appear suddenly. The adolescents were then reduced to passive recipients of treatment. During the interview, the participants were asked to describe the content of their treatment, but most of them found it difficult to explain anything beyond rules and routines at the inpatient clinic. However, several had searched for this information through friends and the internet.

Conversely, a participant who got involved early in the decision-making about admission to inpatient care explained its importance. She was able to postpone an emergency admission. In the meantime, she met the therapist and attended a meeting. She was prepared, aware of the opportunities, and involved from the start. Several interview participants linked knowledge about the hospitalization and treatment to a feeling of being in control. The participants also argued that they wanted to control healthcare professionals’ contact with parents. Although they understood that their parents had to be informed of some urgent matters, they expected to be involved and kept informed. All participants said they had a great need for information about the treatment. Most of them were not told how they could benefit from treatment, possible side effects of medication, and possible treatment alternatives. Thus, it became difficult to participate in decisions about their treatment. One adolescent who had been hospitalized for a long time said she had gradually lost her belief in recovery. She thought it would be easier if she had just known that she could have influenced the choices about her healthcare:

Treatment meetings with the mental healthcare professionals were referred to as a setting where decisions were made. The young people had different experiences of participating in such meetings. Some wanted to participate, and others did not. However, everyone wanted to be able to influence the agenda of the meetings, and at least know what was being said about them.

The way in which adolescents perceived what others were thinking and saying about them influenced their role and participation. Some participants said they had previously viewed the inpatient mental health clinic as a place for crazy people, as they had seen in movies. Although they said they were tired of life or had problems and needed help, they did not identify with the role of a psychiatric patient. They used terms like “feeling stupid” or “labeled.” Those who had been hospitalized or in contact with mental healthcare expressed frustration that previous assessments had left them hanging. The medical record could state “the patient is well known,” but they said they had changed or moved on. Some said they were struggling with something else, but they had been stuck with a previous label or diagnosis. Nevertheless, health professionals drew their conclusions based on past reviews.

Disagreement about the problem was often mentioned as a reason for the adolescents’ inability to participate. Some compared psychological assessment to taking tests in school. They claimed that it was annoying to answer standard questions because they seemed repetitive and not customized to their needs. They added that it was easy to know how to respond to get one diagnosis or another. The participants rarely perceived themselves as being included in discussions about diagnoses and criticized the diagnoses they had been given.

Integrated care pathways were mentioned, but none of the participants knew much about them. Some said they understood the purpose of diagnosis. It could make it easier for professionals to explain a patient’s problem. However, most of the participants clearly stated that they did not support the use of diagnosis because they considered diagnosis as a way of controlling and limiting treatment and user participation. The participants highlighted that everyone is different, and therefore it is vital to listen to the patient’s opinion to adapt treatment and services to their individual needs. Many felt incorrectly diagnosed and deprived of opportunities to influence further treatment; healthcare professionals were seen as having reduced them to their diagnosis. For example, one participant said he had struggled with depression, but after being diagnosed with ADHD, the professionals focused on ADHD, not the depression, and considered the “problem as solved.” Another participant stated that although the inpatient clinic eventually saw that she was struggling with something else, she did not receive the help that she needed because the diagnosis was misleading. Between admissions, she had experienced rejection at inpatient clinics due to “wrong” diagnosis.

Throughout the interviews, the adolescents expressed resistance to the patient role. Such reactions were related to both voluntary and involuntary treatment. When the mental healthcare professionals had decided something, the adolescents often perceived it as final. Their limited participation led to protests instead of partnerships with mental healthcare professionals. It was particularly evident among those who did not feel involved in their admission.

The participants described different reactions when they felt pushed to follow decisions made without their involvement. Some of them felt that they had been left with two choices: to disagree with everything or to pretend to agree. Some said they became silent or merely responded “don’t know” instead of engaging. One participant felt tricked into treatment without being able to participate in that decision. She said she later rejected everything, because that was the only kind of influence that she had. Other participants said they realized that they needed help and were going to give it a try but became irritated when they felt left out of decisions. It could result in an assumption that the treatment was not working anyway.

Those who had experienced involuntary treatment in the past felt that the threshold for using restraints was lower. One participant said she did not get a new chance to cooperate. She sometimes ended up screaming or throwing objects because her opinion was not heard. Another participant gave this example:

However, examples of positive experiences with user participation and involuntary treatment also emerged. For example, one participant who had been admitted against her own will described experiences with shared decision-making in decisions regarding supervision and being able to leave the ward unescorted. As a result, she expressed satisfaction with the treatment. In general, being part of decisions made inpatient admission seem less negative. It gave a sense of control and made the adolescents receptive to accepting and participating in further treatment.

The importance of knowing what would happen during hospitalization and after discharge was emphasized. The adolescents had clear opinions about what a treatment plan should contain, who should be involved in preparing the plan, and what they should be able to decide for themselves. Several participants missed or were not aware of having any plan, and those who had one highlighted the importance of participation in designing it.

Several forms of collaboration affected user participation, not just what happened between the patient and the therapist. Cooperation between the mental healthcare professionals in the inpatient clinic and with other services was necessary to develop a functioning treatment plan. The participants had different experiences with such collaborating and service coordination. As far as most of the adolescents knew, there had been little or no interdisciplinary collaboration between the inpatient and the outpatient mental health clinics. Communication among the clinic, general practitioner, other mental health services, or child welfare was mostly limited to written reports. The adolescents wanted to take part in the treatment planning, but several of them considered this involvement difficult and resulting in poorly coordinated services. Their healthcare professionals seemed to have different agendas and plans for them. One participant described how the inpatient clinic focused on suicide risk assessments to make sure they did not stay any longer than necessary. It gave little opportunity to influence the treatment plan and made the transition between treatment services difficult. A joint plan and establishing relationships with those who were supposed to follow up with them after discharge was suggested to avoid re-admissions and have “smooth transitions.” Cooperation with the school was emphasized. Adolescents being involved in this stated that further help was adapted to their needs.

The experience of collaboration within the clinic was also described in various ways. Some participants reported good experiences with being involved and associated it with flexibility and a consensus among the employees. Good interprofessional cooperation made it easier to get involved in and be comfortable with their treatment and decisions. However, several participants perceived disagreement among the staff or a culture that made participation difficult.

All the participants talked about their own experiences, but they also expressed a desire to contribute to increased user participation at an organizational level. They thought user participation and shared decision-making should be offered through all phases of treatment. Guidelines were proposed, and experienced adolescents should be involved in designing the services. They also believed that conversations with former patients during the treatment would increase engagement, participation, and recovery.