There is increasing focus on the importance of the service user perspective in developing health services. Children and adolescents have previously had little involvement in this process, and been underestimated for the benefit of observing adults like parents or professionals.
KBT thinks it’s important to raise these voices. We believe that good services must be built with those who will benefit from them. Therefore, children and young people with experience need to be involved directly in the process.
User involvement – a human right
The Norwegian Directorate of Health states that “user involvement is a statutory right, and thus no service provider can choose to relate to or not”. The UN Convention on the Rights of the Child has adopted the following:
- States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.
- For this purpose, the child shall in particular be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child, either directly, or through a representative or an appropriate body, in a manner consistent with the procedural rules of national law.
After searching the internet, it seems difficult to find focused research and concrete projects that deal with this, especially those that are active today. This can be seen in connection with the challenges associated with obtaining service user experiences from children and adolescents: underestimation of children and young people’s competence, doubts about credibility in terms of development and rationality, the method of communication itself, and the consent regime for children under the age of 16. It is clear that more knowledge is needed.
The project “My voice matters” focused, among other things, on children and adolescents` experiences with user involvement on individual level. The youth says that a well established relationship with therapists, room for feedback and that their meaning is taken seriously are important elements to succeed with user involvement. Crucial prerequisites are sufficient information and for health professionals to explain why they think and act the way they do. The youth emphasize that health professionals must directly ask for their opinions and wishes, and that their opinions gets real impact on the health service.
There are several venues and methods that focus on and protect children and young people’s rights:
- Equal cooperation – Participation in own plan and process as a service user
- Peer support specialists.
- Written surveys
- Networks with focus on dialogues, exploration, education, dissemination and research considering children and youths mental health
- Childwatch International Research Network – A global, non-profit, nongovernmental network of institutions that collaborate in child research for the purpose of promoting child rights and improving children’s well-being around the world.
- Interviews and dialogue based evaluation
- User Intervieuws User (UIU) – A qualitative method where former service users participate in designing and conducting interviews with current service users. The results are summarized in a final report and shared in dialogue conference with all involved. KBT has long experience with this method.
- The Regional Centres for Child and Youth Mental Health and Child Welfare (RKBU) – Working with developing, managing and providing quality assurance of knowledge about child and adolescent mental health and child care.
- Children and youth as co-researchers
- Children`s Research Centre – Works with children and young people to support their involvement in research, UK.
- The project “My voice matters“, at KBT.
- The project “Spaces and places” – A multi-site, visual methods study exploring spaces available to youth that establish a sense of community and cultural connection when facing increased risks, Canada.
- Child and Youth Council: Young representatives with an advisory function from a service user perspective, aiming at promoting communication, experiences and challenges, for the benefit of service development. Some existing Youth Councils in Norway:
Organizations, foundations and voluntary agencies formed to protect children’s interests:
- The Change Factory. Presents knowledge and experiences from children and adolescents, through lectures, counseling and courses.
- Save the children. Working for children with children, especially vulnerable groups.
- Voksne for barn. Provides knowledge on experience and methodology for systems and individuals.
- Mental health youth. Working for increased openness, visibility and better support for those with mental health problems.
- Landsforeningen for barnevernsbarn. Improvement of children and young people’s meeting with child welfare and change of negative attitudes related to child welfare and children.
- Vårres Brukerstyrte senter. Collection and dissemination of service user experiences.
A selection of literature:
Official documents of Norway
- Norwegian Ministry of Children and Equality. (2016). “The Rights of the Child in Norway” (Report).
Reports and publications
- Kurtze, N., Meneses, J.F., Nguyen, L. (2016). «Effectiveness of user involvement in institutions for children and youth» (Report 2016). Oslo: Norwegian Institute of Public Health.
- Høiseth, J. R., Kvisle, I. M., Kildal, C. & Bjørgen, D. (2015). “My Voice Matters” (Report). Trondheim: KBT.
- International Journal of Qualitative Methods special issue (2017): “Understanding meaningful engagement of youth in research and evaluation”. University of Alberta, Canada.
– Which contains following articles:
- Liebenberg, L. (2017). “Editor’s Introduction to the Special Issue: Understanding Meaningful Engagement of Youth in Research and Dissemination of Findings». (Vol. 16, p. 1-3).
- Woodgate, R. L., Tennent, P. & Zurba, M. (2017). “Navigating Ethical Challenges in Qualitative Research With Children and Youth Through Sustaining Mindful Presence”. (Vol. 16, p. 1-11).
- Bird-Naytowhow, K., Hatala, A. R., Pearl, T., Judge, A. & Sjoblom, E. (2017). “Ceremonies of Relationship: Engaging Urban Indigenous Youth in Community-Based Research”. (Vol. 16, p. 1-14).
- Sanders, J. & Munford, R. (2017). “Hidden in Plain View: Finding and Enhancing the Participation of Marginalized Young People in Research”. (Vol. 16, p. 1-12).
- Reich, J., Liebenberg, L., Denny, M., Battiste, H., Bernard, A., Christmas, K., … Paul, H. (2017). “In This Together: Relational Accountability and Meaningful Research and Dissemination With Youth”. (Vol. 16, p. 1-12).
- Mitchell, C. (2017). “”The Girl Should Just Clean Up the Mess”: On Studying Audiences in Understanding the Meaningful Engagement of Young People in Policy-Making”. (Vol. 16, p. 1-9).
- Liebenberg, L., Sylliboy, A., Davis-Ward, D. & Vincent, A. (2017). “Meaningful Engagement of Indigenous Youth in PAR: The Role of Community Partnerships”. (Vol. 16, p. 1-11).
- Docherty, S. & Sandelowski, M. (1999). «Focus on qualitative methods interviewing children». Researching in Nursing and Health (Vol. 22, p. 177-185).
Links for more info:
- The Norwegian Directorate of Health
- The Ombudsman for Children website
- Children`s Research Centre`s resources
KBT will contribute through initiatives aimed at quality assurance, method research and service user involvement of children and young people, and further dissemination of this work by documentation, lectures and education.
In 2015, the pilot project “My Voice Matters“, in collaboration with the Mental Health Council, Save the children Central region of Norway, and Mental Health Youth, launched the trial and adaptation of the UIU method for youth between the age of 16-18 in St. Olav’s BUP (Young people’s Psychiatric Out-Patient Clinic) Trondheim. A group of young project team members with personal experience received training in UIU and participated in the implementation of interview and process work. November 2th in 2015, a dialogue conference was held with employees from BUP where the final report was presented and discussed.
The goal was to develop a real service user engagement methodology for the children and young people, and bringing the findings to system levels. The results received very good feedback from both the participants and employees at BUP.
In 2017, KBT received support from Extrastiftelsen to continue “My voice matters” as a 3-year method development project, where we will further develop and test the method for different age groups and service, within specialist health services and municipal services.