1.1 Organization of mental health services

The organization of healthcare services varies from country to country. In some, services are free, but availability is reduced by long waiting lists. In other countries, services have shorter waiting lists, but are privatized and costly. Mental health policies, legislation and health programmes are used with the intention to improve the quality of mental healthcare systems. However, laws and guidelines for service provision, which comply with international recommendations and regulations, are mainly accessible in high-income countries. Over 50% of people with severe mental disorders in these countries receive treatment, and governments spend an average of 2 USD per person annually on mental health services.¹ Meanwhile, in middle- and low-income countries, only 0.25 USD is spent per person each year, and 76%–85% of people with severe mental health conditions receive no treatment.

Examples of countries with differences in service provision include the United States, Australia, Mexico and Cuba. In the United States, some mental health services are provided for low-income citizens; others must pay out of pocket. Privately insured adolescents account for nearly half of the expenditures and three-quarters have unmet mental healthcare needs.¹³ In contrast, Australian low-threshold healthcare services are provided nationally, free or at low cost.¹⁴ In Mexico, 45% of the population is covered by social security; others benefit from an insurance scheme.¹⁵ However, many hospitals and health centres lack personnel to cover treatment demand and mental healthcare institutions are lacking in rural areas. Mental health services in Cuba are free of charge and available to all.¹⁶ A UN Committee expert described the Cuban healthcare system to be one of the best globally.¹⁷

In Norway, mental healthcare is free and most adolescents who experience mental health challenges first contact a school nurse or a general practitioner. Low-threshold outreach services are available for adolescents outside schools.¹⁸ Primary care services are the responsibility of municipalities.¹⁹ Since 2020, Norwegian municipalities are bound by law to offer psychologist services for mild to moderate mental health problems. Currently, 84% of municipalities provide such services.²⁰ However, service provision varies considerably between the 356 municipalities due to variations in population size and budgets. Primary care practitioners can refer adolescents with more severe or persistent mental health conditions to child and adolescent psychiatric clinics for short- or long-term care. However, the referral system creates a higher threshold to receive specialist help for mental health problems.

All children and adolescents in Norway have a legal right to access healthcare services of high quality.²¹ Pathways for mental health services were established in 2019 to secure adolescents' rights for timely and effective assessment and treatment.²² However, preliminary evaluations suggest that the pathways are inadequate and most practitioners do not find that it contributes to efficiently reaching treatment goals.²³ Instead, it causes frustration and stress among healthcare practitioners, negatively influencing work motivation.

Existing evidence suggests that adolescents experience insufficient access to services. In our survey of 1500 adolescents, four in ten said that they would not talk to a healthcare practitioner about their mental health.²⁴ Furthermore, 70% said that they had received insufficient information about the services available to them and more than half did not receive sufficient information about their own mental health issues.²⁵ Moreover, GPs serve as gate-keepers to the specialist mental health services. Only one-third of adolescents who have been diagnosed with mental health conditions are referred for secondary care, even though GPs provide limited follow-up.²⁶ There is a significant gap between the services developed in theory by policymakers and what adolescents encounter in reality.

In 2019, the Norwegian Government established an escalation plan to support child and youth mental health.²⁷ The plan stated that children and youth should, to a larger extent, be involved in service development. This is in line with the 2021 Patient and User Rights Act.²¹

The aim of this study was to explore adolescents' perspectives on the ideal healthcare services to meet their mental health needs.

1.2 The study background and context

This study was initiated and run by 10 adolescent coresearchers in the InvolveMENT research project, supported by the project lead (P. V.), who is a senior researcher. It is run by SHARE—Centre for Resilience in Healthcare, which was established in 2017 at the Faculty of Health Sciences, University of Stavanger, Norway. Patient and Stakeholder Involvement is one of SHARE's central strategic research priorities and the InvolveMENT project focuses on adolescent mental health, which has previously been described in Health Expectations.²⁸ The coresearchers were invited to provide their perspectives on research priorities since project start. Within the first year, they also initiated, planned and carried out parts of the research, supported by the lead researcher.

The InvolveMENT project receives financial support for some activities through the Resilience in Healthcare project funded through the Research Council Norway (FRIPRO TOPPFORSK funding stream, grant agreement no. 275367).

1.3 Adolescents' contributions to the research

This study was initiated, planned and run by adolescent coresearchers. Adolescent seminar participants contributed with data, analysed and supplemented by the coresearchers. The manuscript has been authored by the coresearchers. The project lead has provided support throughout all phases and contributed as a coauthor.

2.1 Participants and data collection

Data collection in Phase 1 took place at a 1-day seminar on 26 September 2019 at the University of Stavanger. The seminar, entitled ‘We all have a mental health’, focused on the stigma associated with mental health and mental health services. It was organized by and for adolescents, and six out of seven seminar presentations were given by adolescents, focusing on mental health issues such as ‘suffering alone with depression’, ‘coming out of the closet’ and ‘having a refugee background’. Adolescents in lower (10th grade, age: 15–16 years) and upper secondary school (1st–3rd grade, age: 16–19 years) were invited to the seminar. An invitation was sent to all 72 schools in the county and the seminar was fully booked with 330 adolescents from 18 lower (n = 5) and upper (n = 12) secondary schools from all parts of the county, including cities and rural areas.

Participants could contribute verbally during presentations with comments and questions. They were also encouraged to provide anonymous written perspectives using an online tool—the Mentimeter app.²⁹ Participants visited Mentimeter from their mobile devices and entered a seminar code to enable them to respond to the current questions. The tool supports active and equitable participation in discussions and data collection.³⁰ It provided participants with an opportunity to share instant responses or reflect and respond by the time presentations ended.

Questions posed (Table 1) were used to explore adolescents' perspectives on the ideal healthcare services to meet their mental health needs. The questions had been prepared by the coresearchers with the support of the senior researcher. A total of 295 participants (89%) responded digitally to one or several questions. Response rates for individual questions varied from 17% to 55%. Responses were used for the qualitative content analysis.

Participants in the second stage were the 10 adolescent coresearchers.²⁸ They were 16–20 years of age when they first joined the project and 17–22 years of age at the time of the seminar in 2019. They had then been involved in the project for one to two-and-a-half years. They provided their perspectives based on preliminary categories identified through the qualitative content analysis. Summaries of coresearchers' descriptions were developed by three authors (L. G. M., L. K., P. V.) and further discussed and expanded by the full group. Meeting notes were made and used for further data analysis.

2.2 Data analysis

The qualitative content analysis was chosen to identify the trends and patterns of terms used by the seminar participants. The 295 participants contributed with 588 responses to questions used to explore their perspectives on the ideal healthcare services. Content analysis was used as an exploratory approach assessing large amounts of data, to map the frequency of data and patterns of responses (Table 2).³¹

In the second stage, the 10 coresearchers explored their own perspectives on the categories developed in Stage 1. A thematic analysis was used to enable in-depth exploration of coresearchers' descriptions.³² Written notes of their reflections and discussions were in the form of narratives including context descriptions. Their reflections were assessed by three authors (L. G. M., L. K., P. V.), who wrote summaries for each category description. Categories were grouped into themes, each with a fuller description. The analytic process was iterative, as quotes from seminar participants and coresearchers were revisited and used to reassess the content of the themes until consensus on theme descriptions was reached. Notes were kept throughout the process.

Stage 2 of the data analysis provided more detailed and richer descriptions of the categories identified in the first stage. This provided better insight to understand how adolescents thought that help-seeking could be improved and how drop-out could be reduced. For example, a variety of services had been mentioned by several participants in the first stage. The data in the second stage analysis did, however, provide a richer description of the content of this category, which was therefore developed into a theme. As one of the participants stated: ‘A variety of services available for adolescents increases the chances for them to seek treatment. Not everyone is keen on […] talking face to face […] with a therapist, so having the ability to text and do it through call is important. […] Art therapy, animal therapy, music therapy, is also a good way of providing variety, and could allow for adolescents to help feel more comfortable during therapy if they do something enjoyable’. The data collected in the second stage also provided rich descriptions that brought to light how culture affected the other developed themes.

Participant quotes were used in-text and in drawings to illustrate each theme. The drawings were developed by one of the coresearchers (M. I.) with input from the other coauthors.

3.1 Culturally Sensitive and Responsive

Adolescents' cultural background influence the way they relate to mental health and the healthcare services. For example, sharing private and personal information with a stranger may be considered more or less acceptable and associated with stigma/taboo in different cultures, instead of talking to family members or friends. It is important that the healthcare services are sensitive to adolescents' cultural backgrounds and respond appropriately to meet their individual mental healthcare needs.

To encourage adolescents to search for help, information needs to be easily available online in multiple languages, presented in both audible and illustrative ways aimed at different groups of adolescents, including those who are illiterate and the vision-impaired. It is also important that the services actively reach out to adolescents who may be unfamiliar with mental health and unaware of the available options, for example, for newly arrived refugees.

Culturally competent translators should be available if adolescents and practitioners are unable to communicate through a shared language. Other forms of communication may sometimes be more helpful: ‘Healthcare practitioners [should be] ready to communicate with different methods, depending on what the adolescent is comfortable with, whether that is drawing, writing, or having a translator in the room’. Moreover, body language may have different meanings for adolescents from different cultures. Practitioners should be aware of their own body language and attempt to adapt to individual adolescents. If used constructively, body language can contribute to support verbal communication or feel reassuring where spoken communication is limited: ‘I remember my practitioner once held my hands and said: I am here for you, and will do anything for you to feel safe, but you need to trust me for me to help you. That's when I felt I was in safe hands’.

Where the adolescent and the practitioner are able to communicate, it is important to approach topics based on adolescents' knowledge of mental health. For example, adolescents from some cultures view mental health differently to a Western medical understanding and may, for example, consider such problems to be caused by spirits. Healthcare practitioners should be aware of this and be prepared to manage such conversations.

Different adolescents also have different experiences with and perceptions of mental health practitioners. For example, some believe that mental health practitioners are similar to general practitioners and expect a clinical medical treatment approach, whereas others seek guidance and prefer more collaboration. Their perceptions are in part influenced by their cultural background. Moreover, practitioners' physical characteristics and gender may also influence adolescents' willingness to use the services. For example, for some adolescents, it may be helpful to meet a practitioner of the same gender due to religious beliefs.

Overall, cultural identity is complex and formed by multiple factors such as ethnicity, race, religious and political views, education, peer and family influence, sexual and gender identity, to name a few. To varying degrees, each factor influences an adolescent's perspective on mental health and willingness to use the services. Although it is impossible to be aware of each adolescent's cultural background and needs before meeting them, being willing to adapt to their needs to enhance communication and build trust will aid in creating services that are experienced by adolescents as accessible and helpful.

3.2 Communication of Information

Insufficient information may result in incorrect perceptions about the services and adolescents may feel uncertain and reluctant to seek help: ‘I was scared the services were in contact with the authorities and would share my private information’. Adolescents need access to easily understandable information from reliable online sources: ‘an overload of information that can make it difficult to sift out the relevant information, especially for someone whose energy is drained by mental problems’ (Figure 3).

Key mental health topics, including service information, should be taught in school and the complexity of the information should increase with age. Learning about mental health in school should be as natural as learning about physical health. This would also contribute to destigmatizing mental health. It is equally important for the services to reach adolescents who are not in school. This could be done through other means of communication such as social media, gaming networks and other out-of-school activities to reach adolescents where they spend a significant amount of their time.

Additionally, communication of information should be a two-sided process—a dialogue. Adolescents need to experience healthcare professionals who listen attentively to them: ‘A lot of teenagers don't feel like they are taken seriously by adults. The more trusting the teenager is with the professional, the more they will feel comfortable with speaking to them. This will help them progress toward solving their mental health issues’. Dialogue is a necessary part to develop a trusting relationship that is essential to achieve progress in the long term and it can be used to continuously adapt the services to better meet adolescents' changing needs.

3.3 Easy Access

Accessible healthcare services are affordable, within reach, have short waiting lists and flexible hours. Many adolescents wait 6–12 months before their first appointment (Figure 4). By that time, their mental health can significantly deteriorate or they may lose hope and motivation to seek help. Quick access is possible with private practitioners, but costly, and not an option for those who have financial constraints or who do not want to involve their families.

Adolescents who attend school often experience that ‘the available hours of the school nurse is a running joke. Even when she is supposed to be there, she is often stretched thin over multiple schools and has to juggle other services’. Many do not know who their school nurse is and how they can help. Overall, the help-seeking process can be discouraging. In order for adolescents to reach out, they ‘wish the nurse would come around and speak to them individually and in classes’, initiate conversations and provide clear and updated schedules.

An online booking system should be available for all healthcare services. Access should also be timely in convenient locations. It should be placed so that they can be entered discreetly (Figure 5). Many prefer anonymous online services, where they can choose when to disclose information about their identity. Services must be accessible outside school hours and be user friendly. These aspects of service access are important to adolescents overall and may be even more important to those who have a minority background, ethnic or otherwise.

3.4 Variety of Support

Healthcare practitioners need to accommodate for individual needs early in the treatment process, rather than jumping to conclusions. By giving adolescents choices, practitioners communicate that they are actively listening and have genuine interest to help, creating a good start to build trusting relationships where both sides can communicate what they see as the most effective way forward.

In a technological society, texting practitioners or using online resources may correspond with how adolescents communicate in everyday life. Others prefer face-to-face meetings individually or group therapy with peers, which can also strengthen social bonds (Figure 6).

Moreover, how a practitioner meets an adolescent could be varied in an effort to ease the experience of seeking professional help, for example, asking if they prefer doing activities together, like simply making a cup of coffee in the office kitchen before sitting down. Offering a variety of activities can better meet individual needs and contributes to reducing tension and supporting openness. ‘Art therapy, animal therapy, music therapy, is also a good way of providing variety, and could allow for adolescents to help feel more comfortable during therapy if they do something enjoyable’. This may extend to the location of meetings. Sitting in an office is very formal, as opposed to going for a walk or sitting in an open area. Each individual will have preferences for support and treatment options that should be jointly considered by the practitioner and the adolescent, where the adolescent's cultural background should also be taken into consideration.

3.5 Consistency

Service consistency means that adolescents should experience little unanticipated changes in the care that they receive. ‘Adolescence is a tumultuous period of life with many changes… healthcare services that are consistent are extremely important [to] ensure they get the help they need’.

Raised concerns include ‘the therapists changing too often, making it difficult to progress’. Adolescents are then forced to explain the same issues to different practitioners, over and over again. This is discouraging and they may withhold information to avoid repeating themselves (Figure 7). It is demotivating and halts progress towards achieving mental well-being, along with the adolescents repeatedly being reminded of the trauma without consistent support from one practitioner. This may be even more detrimental for adolescents with minority backgrounds, some of whom may have significant difficulties in trusting ‘strangers’.

Over time, adolescents may limit their openness and willingness to try practitioners' suggestions and therapy. They do not feel that practitioners know ‘the whole story’ and they are therefore unequipped to help. On the other hand, adolescents may also wish to change the practitioner. Although practitioner change is permitted, it is not consistently offered. While some adolescents can request changes, others are reluctant to do so or are met with ‘doubt and opposition’. This causes some to drop out of treatment.

Adolescents need a system that reinforces trust, and encourages hope and progression. Adolescents who feel comfortable with the practitioner are more likely to approach therapy with a positive mindset and build long-term, trusting relationships. They are more open to feedback, support and suggestions. Regular appointments agreed ahead of time can facilitate scheduling their busy lifestyles around appointments, thereby reducing the likelihood of dropping out.

4.1 Implications of the research

We suggest that implementation of the proposed measures described as part of the five themes may increase the likelihood of adolescents seeking help from the mental health services and reduce treatment drop-out.

The research has multiple implications for practitioners, educators, system organizers, researchers and adolescents. We suggest that the current healthcare system needs to be redesigned through the involvement of multiple stakeholders, including researchers, service designers, technology experts, clinicians, mental health/interest organizations and last but not least adolescents and their support networks (e.g., family members and friends). We suggest adolescents should take part as co-researchers in planning and carrying out the research and as participants in testing the implemented changes. Suitable research designs could include e.g. approaches to codesign/coproduction and action research, in particular, with a view to also integrating culturally diverse perspectives.^{51, 52}

Educational institutions should teach healthcare students to be sensitive and flexible to adolescents' individual differences and how to adjust the service to meet their needs. Teachers and schools should encourage adolescents to play an active role in their mental health by teaching them about mental wellness. Healthcare practitioners should contribute to establish a trusting relationship, to encourage hope and engagement. Institutional leaders should consistently check with service users to gather their perspectives. Politicians and policymakers should acknowledge the importance of youth mental health and allocate sufficient funds.

Moreover, implemented changes to the healthcare services should be assessed using rigorous research methods to determine the acceptability, effectiveness, cost-effectiveness and safety of the services, using pragmatic (cluster-)randomized-controlled trials, case–control and cohort studies. This should be combined with qualitative research methods, in particular, to gain insight into adolescents' and healthcare practitioners' experiences with the implemented changes. We suggest that a revised and improved mental health service should also be a self-learning system, that is, it should include strategies to further learn from the on-going experiences gained within the services.

Redesigning the mental health services and implementing a continuously learning and changing service system could contribute towards significantly improving mental health in adults as well. One in eight adults is affected by mental disorders.⁵³ Three in four experience mental health symptoms before the age of 24.⁵⁴ Improved awareness and access to properly equipped services for youth will enable prevention, early detection of mental health problems and effective provision of interventions.

4.2 Strengths and limitations

The main strength of this study is that the research was planned, led and carried out by adolescent coresearchers. It is not unreasonable to assume that the anonymized and adolescent-to-adolescent data collection approach may have contributed to honest responses. Adolescent co-researchers leading the project likely strengthens the relevance of the results to other adolescents. On the other hand, their limited research competence could pose a potential risk to the validity and reliability of the results. However, a senior researcher was extensively involved in planning the project, analysing the data and coauthoring the manuscript. The involvement of healthcare practitioners would have been likely to provide different perspectives, but the focus of this study was to emphasize the voices of adolescents.

The data in this project were collected from adolescents in lower and upper secondary school, and therefore, results may not be generalizable to the population of younger adolescents or young adults, as well as those who have dropped out of school. Moreover, caution should be exercised when generalizing results to other countries due to cultural differences and different systems of health service provision.