1 Background

Young people experience a high burden of disease attributable to mental ill-health. Mental disorders increased from 1990 to 2019 and were the leading cause of disability among young people in Europe prior to the onset of the COVID-19 [1]. However, research indicates a two-fold increase in mental ill-health prevalence during the pandemic, with approximately one in four young people (aged 16–24 years) struggling with depression symptoms, while one in five reported elevated anxiety symptoms [2]. Additionally, young people are reluctant to seek help and have high dropout from treatment [3, 4]. An alarming rise in mental health challenges among young people necessitates a proactive response, as there is an anticipated increase in mental healthcare utilization [2]. Recognizing the importance of shaping children’s and young people’s well-being for future generations, UNICEF emphasizes the need to enhance mental health services for these groups of people [5]. “Youth-friendly” mental healthcare services are those that are tailored to meet the needs of young people [6]. An important aspect of any potential solution and youth-friendly services is involving young people in the design, implementation, and evaluation of mental health interventions and services [7].

A recognized description of quality in healthcare services is based on six dimensions: safe, effective patient-centered, timely, efficient, and equitable. Patient-centered implies that services are responsive and tailored to the preferences and needs of service recipients. In Nordic healthcare services, there is an additional emphasis on involving the users in the exchange of experience and knowledge to ensure that services are safe, effective, and coordinated [8]. The importance of youth involvement to improve mental health service utilization, to ensure that the services are developed in a way appropriate to youth has been increasingly recognized and advocated over the last two decades or more [9,10,11]. Recognition of young people’s competence and rights to participate in and influence healthcare decisions is consistent with article 12 of the United Nations Convention on the Rights of the Child [12]. Despite this recognition and recommendation, young people continue to be left out of mental health service planning and evaluation [13]. Consequently, service user involvement in mental healthcare for young people is described as a political objective that lacks general translation into clinical practice [14]. Thus, there is a need for knowledge about barriers and how to implement recommendations into practice.

Prior research has provided a framework for engaging youth in service user involvement [15, 16] and shown that involvement in mental health settings is beneficial for the youth participating in such initiatives, as well as for all those who use the health services, and for the organization as a whole [17]. A scoping review aiming to identify what characterizes youth-friendly mental health and substance use services found youth involvement at an organizational level to be a key component [11]. A systematic review of international literature over the last 20 years provides insight into user involvement for adolescents [18]. This literature review revealed sparse research with user involvement at the organizational level, yet it demonstrated how services can become more relevant for adolescents’ needs by allowing them to influence the design and implementation of mental health interventions. In turn, such involvement strengthens the appropriateness, acceptability, and outcomes of the treatment [18].

Previous research has thoroughly considered youth’ capacity to be involved in decisions regarding their own mental healthcare [19], but less is known about experiences when youth with mental health challenges is involved at an organizational level to improve the health services or how the youth themselves perceive such effort. Young people’s core motivation to take part in projects to improve mental healthcare services is to support their peers [20]. Contribution from young people with diverse backgrounds having personal experience with mental health is considered optimal for user involvement at an organizational level [18]. These “experienced users” may have differing formal or informal roles such as advisors representing a service user organization, or as employed consultants.

The terms “patient/user involvement”, “participation”, and “patient/user engagement” are frequently used interchangeably to describe a similar concept [21]. In this article, the term "user involvement" is used when referring to young people's involvement in quality improvement of mental health services. We used the following definition from Tritter's framework for patient and public involvement (PPI): “the ways in which patients can draw on their experience and members of the public can apply their priorities to the evaluation, development, organization and delivery of health services.” [22]. This definition recognizes the potential of considering users' experiences for quality improvement. The aim of this study was to gain understanding about user involvement in quality improvement of mental health services from the perspective of young people with a history of mental health problems and prior use of mental healthcare services. The following research questions were formulated: What are the pivotal conditions of incorporating user experience and what are the perceived benefits and challenges related to youth user involvement in quality improvement of mental health services?

2 Method

The study used a qualitative explorative design and were designed in collaboration with two young people with personal experience from both receiving mental health services and user involvement at an organizational level. Participating as co-researchers involved designing the objectives, recruitment strategy, information letter, and interview guide.

2.1 Study setting

The study was conducted within a Norwegian public healthcare setting for Children and Young People’s Mental Health Services (CYPMHS). The services consist of two levels: primary municipal healthcare and specialized healthcare providing treatment. Municipal mental healthcare for children and youth has somewhat varying services, mainly for mild mental health problems and preventive linked to school health services. The specialized Child and Adolescent Mental Healthcare Services (CAMHS) are organized under hospital departments of mental health/psychiatry and provide outpatient and inpatient treatment for children and young people up to the age of 18 with moderate and severe mental disorders. User involvement is a national quality indicator for the services and cooperation with service recipients is common through service user organizations or internal user councils. Service user organizations are independent of public healthcare services and are private non-profit interest organizations. They do, however, usually receive some public funding. The Change Factory (Forandringsfabrikken in Norwegian) is an innovative non-profit foundation mediating youth involvement at a policy- and organizational-level. The Change Factory advocates the rights of youths who have received mental healthcare to be heard in the process of renewing and developing services and has carried out projects where they have collaborated with both municipal services and CAMHS. Experienced users (called PROs) have in this context participated in several seminars and projects with healthcare professionals across the country. The PROs are not employed or paid for by public health services. They are recruited on the basis of their prior experiences but may still receive mental healthcare from a different service provider than the one for which they are assigned as PROs. As part of user involvement at an organizational level, the PROs and professionals from the mental health services, mainly from CAMHS, represented by managers and therapists with interdisciplinary backgrounds, have collaborated to improve the quality of the services. Children and Young People’s Mental Health Services who wanted to take part in this collaboration met The Change Factory at both national and regional gatherings. The first author (SB) participated as an observer on several gatherings and meetings. The gatherings contained a sequence in which the PROs presented their experiences and subsequent conversations in groups. Smaller follow-up meetings with the PROs were arranged at the individual healthcare services. In those meetings, the services could present themes or projects they wanted to collaborate on further (e.g., one hospital wanted to make treatment meetings more youth-friendly and used simulation training with PROs undertaking the role of patients).

2.2 Recruitment and sample

Purposive sampling was used to select participants with specific experiences best suited to shed light on the research question. Participants were eligible to take part if they had prior experience in organized user involvement at an organizational level with youth mental healthcare; prior experience with receiving mental health services themselves between the age of 13 to 18 years; and were currently over 16 years of age. Eligible participants were recruited through The Change Factory. We contacted the national advisor in The Change Factory with a request for recruitment. Regional managers were then informed about the study and the inclusion criteria and approached the PROs with information and an invitation to participate. Those interested in participation could contact the interviewer directly, or if they preferred, let the region manager arrange the meeting. Ten young people, nine female and one male, participated in interviews (Table 1). Saturation was assessed based on the richness of the data and whether they provided sufficient depth and insight to understand the phenomenon under study [23]. Initially, we aimed for approximately 10 participants based on individual interviews, assessed information strength along the way, and considered data richness to be sufficient after nine interviews. We did not map the extent of projects and meeting the paricipants had been involved in, but all the participant had extencive experience with user involvement and had been engaged as PRO’s for an average of 3,5 years. Even though the inclusion criteria only required previous treatment experiences, most of the participants had personal mental health challenges and several said they still were undergoing treatment. To protect anonymity, gender is not specified further in this article.

Table 1 Participants' characteristics and data collection
Full size table

2.3 Data collection

We conducted eight semi-structured individual interviews and one pair/group interview (Table 1). An interview guide was created in collaboration with two young, experienced users in the role of co-researchers. The interview guide emphasizes experience with questions such as: what has been challenging and how can user involvement be better facilitated at an organizational level. Two participants were interviewed by author SB and all the remaining interviews were conducted by author CL. Due to Covid-19 infection control restrictions, five of the individual interviews were conducted via Skype. Based on the participants' choice of where to conduct the interviews, one interview was carried out on the premises of The Change Factory, and the remaining interviews were carried out in a meeting room at the University. All interviews were audio-taped and lasted between 28 and 112 min (M = 59 min).

2.4 Analysis

We used transverse thematic analysis to acquire themes across the whole dataset. The analysis was conducted according to Braun, Clarke et al. [24] six-step thematic analysis framework. The transcripts were read several times to attain a general understanding of the content before the coding process. Then all meaning units relevant to the research questions were coded, and the codes were clustered in groups constituting preliminary themes. The preliminary themes were then reviewed in relation to the dataset. Adjustments were made to make sure the final themes were coherent and reflected the content from the transcripts. In the final step, we developed a report of the findings with extracted examples for each theme. Extracts from the analysis is presented in Table 2.

Table 2 Example of meaning units, codes, and themes in the analysis
Full size table

3 Results

The analysis resulted in three themes; (1) involvement promotes recovery, (2) Involvement entails challenging responsibilities, and (3) involvement requires facilitation and support. The first theme refers to benefits related to user involvement at an organizational level, the second theme to challenges, and the third theme describes necessary conditions and possible limitations. Each of these themes is described in more detail below.

3.1 Involvement promotes recovery

Being involved as experienced users at an organizational level led to positive consequences for the participants at an individual level. All participants highlighted how user involvement contributed to own recovery even though their role as PROs and experienced users did not deal with their own situation or treatment. Working with user involvement at an organizational level gave participants the experience of being part of a team and fellowship with other young people who shared similar challenges in their life. In addition, they had to deal with health services and indirectly a large group of young people in need of such healthcare. Several participants described how it made them feel less abnormal and managed to handle their painful experiences. Part of this was related to the fact that they no longer felt a sense of guilt for their mental problems or as a burden to their surroundings and the healthcare. One participant described how user involvement contributed to a positive identity as follows:

It was kind of good to feel that you’re not abnormal. It was a kind of fellowship that is good. Suddenly my perspective was important. So, it was like … I gained more confidence from it (participant 5).

The feeling of confidence was associated with support from the fellowship, but also through using negative experiences in a way that felt meaningful. By doing so, it was easier to deal with such experiences. Several participants described a personal change of being more self-confident and able to speak openly and share experiences. In turn, this made social interactions and life in general easier. One participant summed up the coping experience like this:

Now I manage to put my own experiences into words in a better way. It gives me a feeling of mastering (participant 10).

For all participants, the experience of coping was also linked to another component of service user involvement: their contribution to change the systems could contribute to helping other young people. The participants went from being patients to becoming important voices, where their advice and opinion became respected and valued. Participants highlighted that their contribution should benefit a large group of young people. It entailed an awareness, as expressed by one of the participants:

My role is to convey something we call “main answers”. That’s what the vast majority of children and young people say, and in a way, we have the responsibility to tell this to the professionals. Of course, one can use examples from our own lives, but we must convey what is important for the majority (participant 1).

3.2 Involvement entails challenging responsibilities

A challenge several participants highlighted with user involvement at an organizational level was the concern for the other youth’s mental health. Being part of a fellowship with other young people with mental illness where they had a lot of information about each other’s challenges entailed a feeling of responsibility. The participants said such responsibility could be too great, made them worried, and in some cases afraid that other PRO’s may harm themselves. One participant described this challenge as follows:

An experience, which I have actually struggled a bit with during my involvement in this project, is that we (the PROs) affect each other negatively as well. If one youth is having a really bad time, and one of the other sees it, it hurts because you see how the other person struggles with very heavy things. You get worried and somehow feels a responsibility to protect them (participant 2).

Although a fellowship where several young people worked together with service involvement was described as positive, it could also give rise to some challenges. The same participant described further on the risk of negative influence on each other with an example where another PRO posted pictures of self-harm on Instagram:

It is particularly on social media that youth post bad thoughts, stuff they struggle with, when hospitalized or similar. When you see this, that someone have gone this far to get attention, you might think; okay, should I also do that to get help? It’s a challenge with this role, that you must be able to process it (own experiences) enough so that we don’t trigger each other or get triggered ourselves to do things... (participant 2).

Even though the participants were engaged at an organizational level, which was not directly related to their personal healthcare, the process was described as challenging because it involved revisiting old memories. Some participants had previously moved past these experiences but were compelled to confront them once again. Additionally, some participants were still undergoing treatment, which added an additional layer of complexity. A few participants expressed that healthcare professionals did not seem to grasp the notion that young people could be involved in improving the quality of care at an organizational level while simultaneously grappling with mental illness. One participant vividly described the peculiar sensation of discussing user involvement and the adaption of health services with healthcare professionals who claimed that such an approach would be difficult to implement in the clinic, particularly when dealing with specific diagnoses with severe mental disorders. It was disconcerting for her, as she personally faced ongoing challenges of the same nature:

So, it’s almost like you somehow need to use “cases” to describe how I can stand here and talk while I am still actually hospitalized (…) It’s a heavy ship to turn, if I can put it that way. It’s demanding. After all, it doesn’t seem like everyone (the professionals) wants to do things differently (participant 9).

The problem of health professionals disregarding severely mentally ill youth as incapable of contributing and expressing themselves was repeatedly mentioned as a challenge by several participants. According to the participants, the PROs represented crucial perspectives and voices, and they believed it was indeed feasible to integrate mental illness and user involvement in order to enhance the quality of services. Even those participants who were personally grappling with mental health issues and had encountered negative experiences with their own treatment demonstrated a keen awareness of distinguishing between their individual experiences and the collective needs of other young individuals. They emphasized the importance of ensuring that their contribution accurately reflected the diverse youth population at large.

3.3 Involvement requires facilitation and support

Even though the participants recognized the distinction between their role in user involvement at an organizational level and their personal needs, they repeatedly drew parallels between conditions influencing user involvement at both individual and organizational levels. They emphasized the importance of youth feeling confident and secure to voice their opinion and be able to collaborate both with their therapist and with healthcare professionals related to the provision of healthcare services in general. According to the participants, creating a sense of safety was crucial, which could be achieved through receiving comprehensive information and having open-minded healthcare professionals who regarded experienced youth as equal partners in decisions pertaining to service design. The importance of partnership in all kinds of user involvement was described by one of the participants as follows:

I believe that in order for young people to be able to get the right help, they must be taken in as equal partners. This is quite important, as it is they who know their life best. They know what is difficult and what they need help with (participant 6).

The way in which the healthcare professionals responded when the participants expressed their views as experienced users was highlighted as especially important. The nature of interaction between experienced users and the healthcare professionals played a crucial role in shaping the participants’ perception of fruitful collaboration and their ability to actively engage in discussions. During the participants’ engagement in user involvement at an organizational level, they frequently encountered situations where they had to present the needs and experiences of young people with healthcare services to a large group of healthcare professionals. In such settings, they were peculiarly attuned to the attitudes and level of interest displayed by the audience:

If you see that they (the healthcare professionals) are really critical and they have kind of “stone faces” it can become quite difficult to speak up in front of them (participant 7).

Nevertheless, the participants frequently encountered a scenario where healthcare professionals demonstrated enthusiasm and a genuine desire to adapt their clinical approach to be more accommodating for children and adolescents. However, they often faced obstacles imposed by regulatory framework and service providers, which limited the extent to which such changes could be implemented. Additionally, the participants sometimes found it challenging to directly convey their opinion to healthcare professionals, especially when their input involved strong disagreement or criticism that they feared could be hurtful. To illustrate this, one participant provided the following explanation:

It’s a bit challenging to say that the professionals are doing their job wrong, or somehow in a bad way. That it can be done better. Many people might react, getting frustrated or upset (participant 3).

When it was perceived too challenging expressing their thoughts to individuals face-to-face, the opportunity to provide feedback anonymously where recommended. For instance, one participant suggested the implementation of an anonymous feedback system regarding service design that would be accessible for all patients. Such a feedback system would enable young people receiving treatment to contribute to user involvement at an organizational level, even without being formally engaged as experienced users through user organizations or project participation.

The participants described their involvement as experienced users as often occurring by chance. Typically, they became engaged in service user involvement through a friend or encountering a therapist who was aware of a user organization specifically for young people with mental health issues. When asked about ways to enhance user involvement at an organizational level for youth, many participants expressed a need for more accessible information explaining why and how youth can contribute to making services more youth-friendly. They recommended involving young people with lived experience in the dissemination of this information and suggested reaching out to schools as well as patients in the clinics.

4 Discussion

Overall, the results demonstrate positive experiences of youth being involved in quality improvement of mental health services, such as the fostering of a positive identity and personal recovery. However, the youth also experienced challenges, including concerns for peers’ mental health, the emotional impact of revisiting past experiences, and the presence of systemic barriers and attitudes within healthcare services. These results underscore the importance of providing necessary support and facilitation to enhance user involvement at an organizational level for youth.

While previous research has primarily focused on user involvement at the individual level, our study suggest that much of this knowledge is applicable to the organizational level as well. The prerequisites for user involvement at the individual level, such as establishing a sense of safety, receiving accurate information, and fostering transparency and equal partnership between service users and providers [18], are also relevant for the involvement of young people at the organizational level. A recent review [25] examining the recovery process of youth with mental health issues emphasized the significance of agency and participation and highlighted the need for a “youth-friendly” mental health service that supports involvement and recovery. Engaging experienced users in the planning and implementation of interventions to leverage their unique experiences is considered beneficial for creating such youth-friendly services [25].

Previous literature has described approaches for youth engagement and service user involvement, such as the Orygen Youth Engagement and Participation Strategy [15] and the McCain Youth-Adult Implementation model [16]. Although our study concerns young people’s experiences with user involvement at an organizational level rather than designing the framework for youth participation like the Orygen and the McCain models, our findings remain congruent with the imperative need for adept support and mentorship among experienced users. The involvement of young, experienced users in user involvement at an organizational level brings forth emotional challenges associated with revisiting past memories, a sense of responsibility towards peers, and possible negative effect on each other. These findings, which have not been previously described in research, underscore the importance of the organization’s responsibility in providing support for young, experienced users recruited for service development and quality improvement. While user involvement offers significant benefits for the services [18], it also requires sufficient allocation of resources to support it, similar to other quality-enhancing measures. However, it is worth noting that emotional challenges related to confronting past experiences and engaging in social interactions are considered necessary aspects of a recovery-process. Supporting personal recovery can be a challenging and ongoing journey, but it is a guiding principle for the 21st-century mental health services [26].

Interestingly, our findings demonstrate that participating in service user involvement at an organizational level promotes recovery. Therefore, being engaged in user involvement at an organizational level can also be considered health promoting at an individual level. According to Slade [26], the experience of recovery for an individual involves four phases: developing a positive identity, establishing personally meaningful perspectives, taking personal responsibility, and assuming new valued social roles. The involvement of young people as consultants or PRO’s can have significant implications, fostering their sense of autonomy, enhancing social skills and network, and empowering them in their own recovery process [17]. The results signify a transition moving from a mental illness identity to being accepted and valued, which is a crucial aspect of young people’s recovery process [25].

Consistent with our findings, previous research has identified organizational challenges that act as barriers to youth-adult partnership, including existing cultures, lack of flexibility, and limited legitimacy within the organization [27]. Addressing culture and attitudes among service providers requires initiatives such as training, skills development, and management support [18, 19]. However, our study results demonstrate that healthcare professionals are often perceived enthusiastic about supporting user involvement and adapting services accordingly. Unfortunately, they encounter obstacles imposed by organizational regulations [28]. Although there is limited research on user involvement at an organizational level, similar findings have been reported, highlighting how inflexible regulations hinder the provision of treatment aligned with the needs of service users [19]. Embracing a recovery orientated approach, it is essential to view young people with mental illness as part of the solution rather than the problem [26]. Mental health services that recognize the value of experienced users as resources and align their values and role expectations accordingly will promote the development of youth-friendly services.

Additionally, implementing feedback systems allows the system to gather insights from the experience of those receiving mental healthcare and develop services and methods according to their needs. Thus, a feedback system contributes to user involvement at an organizational level for young people in mental healthcare without requiring their direct participation in projects, advisory boards, or user organizations. This type of involvement can be characterized as collective and indirect, as described by Tritter [22]. In contrast, collective and direct involvement occurs when young, experienced users actively participate in decision-making processes related to service development [22]. It is relevant to note that while ideal organizations should be independent from the healthcare system, they have their own agenda. For instance, in Norway, the Change Factory has faced criticism for selecting young people to advocate their specific policies. When involvement is responding to a pre-existing agenda, it is considered reactive (22). However, organizations and user boards typically represent specific agendas. Therefore, a feedback system would supplement the input provided by these representatives.

4.1 Strengths and limitations

A study strength lies in gathering the experiences of several young, experienced users, as their perspective on user involvement at an organizational level in mental health system strengthening is scarce in previous research. Further, the participants represent diversity in their backgrounds and comprehensive experience with user involvement at an organizational level with different mental health services. As to the study limitations, all data collection primarily relied on individual interviews, with only one interview conducted as a pair/group. Four of the interviews were conducted digitally, which could be considered a limitation. Image transfer and similar procedures for carrying out the interviews and transcription were used in order to minimize inequality. Two participants are normally not characterized as a group. Originally, the intention was to use a combination of individual interviews and focus groups to allow participants to choose the format that felt safe and allow them to express themselves freely. In addition, a combination of information sources was planned as part of triangulation. To ensure consistent and reliable findings, observations at meetings provided a more comprehensive understanding of the research findings.

The sampling method was chosen due to the limited number of youths with the acquired characteristics. We did not aim for a representative sample but a greater variety, not least in terms of sex, could have contributed to more nuanced findings. Study participants with experience from one specific user organization/foundation may introduce biases. However, the study is not an evaluation or related to The Change Factory except for recruitment and the fact that the PROs experiences are related to their work in The Change Factory. To ensure transparency, a detailed description of the study setting is provided. Although the findings demonstrate consequences for youth at the individual level, the study is limited to user involvement at an organizational level with youth as experienced users taking part in quality improvement and shaping of the services.

5 Conclusion

This study demonstrates how young people experience positive outcomes of being involved in user involvement at an organizational level. Their engagement, role, and cooperation with other experienced users and healthcare professionals contributed to the promotion of a positive identity and personal recovery. The study shows that young people have capacity to, and will benefit from, participating in quality improvement of healthcare services regardless of whether their mental health challenges are mild or severe. It is thus important ensuring a diversity in user experiences and perspectives of young people participating in quality improvement. It may be appropriate to exercise caution when relying solely on experiential expertise that exclusively represents one user group, organization, or project.

However, in addition to the positive consequences the participants experienced, they also encountered challenges such as emotional impacts. Hence, providing necessary support and mentoring is essential. Experiencing equal partnership with healthcare professionals promoted the user involvement. On the other hand, experiencing an attitude among healthcare professionals that young people with ongoing mental health issues lack capacity to participate in service development inhibits user involvement. A practical implication of this finding is thus the importance of addressing attitudes within healthcare services to enhance service user involvement at an organizational level, and thereby contributing to improve quality and ensure more youth-friendly services. Based on the study findings, we also recommend measures for recruitment of experienced users and feedback systems to obtain views about the services from a wider group of young people.

Although previous studies have demonstrated how young people’s involvement contributes to more relevant services, research on the impact of such involvement in service development is still lacking. There is also a need for further research on how to effectively organize service user involvement in public healthcare services and address organizational challenges.

5.1 Recommendations for practice

  • Ensure diversity in user experiences and perspectives among young people participating in quality improvement initiatives within healthcare organizations.

  • Provide necessary support and mentoring to address challenges, including emotional impacts, faced by young people engaged in user involvement.

  • Address attitudes within healthcare services and among healthcare professionals that may perceive young people with ongoing mental health issues as lacking the capacity for participation in service development and foster equal partnership to promote effective user involvement.

  • Develop and implement feedback systems to obtain comprehensive views about healthcare services.