Service user involvement for children and youth

Image: User intervieuws user group

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.

Competence center for lived experience and service development (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:

Article 12

  1. 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.
  2. 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.

Pasient- og brukerrettighetsloven [The Patiens’ Rights Act] § 4-4 include rights specifically regarding children and youth in health services in Norway: “(…) As the child develops and matures, the child`s parents, others with parental responsibility or the child welfare, shall listen to what the child has to say before consent is given. When the child is 12 years old, it shall say its meaning in all questions concering its own health (…)”. [Translation by KBT]

The Child Welfare Act § 6-3 Children`s rights during proceedings states:

A child who has reached the age of 7, and a younger child who is capable of forming his or her own opinions, shall receive information and be given an opportunity to state his or her opinion before a decision is made in a case affecting him or her. Importance shall be attached to the opinion of the child in accordance with his or her age and maturity.
A child may appear as a party in a case and exercise his or her rights as a party if he or she has reached the age of 15 and understands the subject-matter of the case. The county social welfare board may grant a child under the age of 15 rights as a party in special cases. In a case concerning measures for children with behavioral problems or measures for children who may be at risk of human trafficking, the child shall always be regarded as a party.

 

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 recent years can nevertheless be described a paradigm shift. Having seen children as adult dependent, vulnerable and incompetent objects in a maturation process, they are now increasingly seen as subjects and active actors with competence in their own lives. James and Prout describe this in their 1990 collection: Constructing and reconstructing childhood-New directions in the sociological study of childhood. Their collection is among the most referenced works on this topic. It says children’s immaturity is a pure biological factor, and how this immaturity is understood and used to something meaningful are cultural factors. Traditionally, children have been researched on and not with. The new paradigm is a development where children are participants. There is more room for the child’s own voice and action, and services and research departments make it happen.

This is often put in context with Honneth’s theory of recognition. Honneth assumes recognition arises and takes place in dialogue with others, i.e. a relational understanding of recognition. He divides recognition in three terms: Love comes from close private relationships characterized by trust, devotion and acceptance, and builds the child’s identity and self-confidence. Right comes from the rights a person has in relation to the obligations of society in terms of norms, equality and performance, and builds the child’s self-respect. Solidarity is about equal acceptance and appreciation for who you are and being part of a community, and builds the child’s self-esteem. Honneth argues that these three forms of recognition together form a basis for the child’s development and their place in society’s interaction. The author Nigel Thomas states in the article that one can access how children’s participation works in line with how strong these forms of recognition are, because they include both private and emotional and the public/social and rational.

There is no doubt there are more ethical considerations when it comes to children and adolescents. Including children affects ethical dilemmas in research, particularly related to the relationship between protection and participation. In the article “Sårbare” barn som deltakere i kvalitativ forskning [“Vulnerable” children as participants in qualitative research] (2010), the authors Strandbu and Thørnblad raise this dilemma in light of research. Ethical guidelines in research lay down guidelines for research design and for inclusion and exclusion, thus affecting the production of knowledge. The authors point out that predefining groups as “vulnerable” and “exposed” could affect the choice of method, which can lead to a risk that the results are of poor quality or to a lesser extent reflect the reality.

Navigating Ethical Challenges in Qualitative Research With Children and Youth Through Sustaining Mindful Presence (2017) addresses the same topic. On the other hand, the article mentions that including children and adolescents in research and evaluation can lead to empowerment. The ethical considerations include anonymity, consent, different understanding of phenomena, power, unexpected emotional or risky information, and especially the relational. Therefore, better ethical guidelines and tools for the researcher/evaluator are needed in form of mindful presence. This means self-awareness, self-regulation, involvement, empathy, acceptance, openness, curiosity, reflectiveness, flexibility and respect. Using mindful presence consciously in contact with children will help the adults cope with the ethical dilemmas.

On July 1, 2017, Norway received a new regulation stating children between the ages of 12 and 16 have the right to consent to participation in medical and health related research. The court has clear prerequisites regarding the type of research project, ethics, utility and informed consent adapted to children. This new regulation is important because it opens up opportunities for children who otherwise would not be able to participate, and because it shows recognition of children’s knowledge. It’s a step in strengthening children’s ability to participate and influence their concerns in society.

Much of the foundation is built on rights and recognition, but it’s more than that. The development of user involvement for children is characterized by tokenism- “sort of involvement”, i.e. symbolic involvement to achieve certain demands or benefits without giving children actual influence. In Teoretiske perspektiver i synet på ungdoms medvirkning – en litteraturgjennomgang [Theoretical perspectives of youth participation- a literary review] (2011), Backe-Hansen states that the end product of participation is the definition of power: influence. She writes that power is that what is being heard results in real influence, and when children have power that have consequences where decisions are taken therefore can be seen as successful participation- i.e. user involvement.

In practice

How does this happen in practice? One of the models that has had a lot of influence on this topic was developed by Hart in 1992, and has the name “Ladder of children’s participation”. This model is reflected in Teoretiske perspektiver i synet på ungdoms medvirkning – en litteraturgjennomgang [Theoretical perspectives of youth participation- a literary review].

  1. Manipulation- Children are used to argue a case in order to promote the purpose of adults or are consulted without feedback.
  2. Decoration- Children mark a case but play no role in the case itself.
  3. Tokenism- Symbolic involvement in which children have no influence.
  4. Assigned but informed – Adults have defined and designed, but children are invited and informed.
  5. Consulted and informed – Children are included in advance, informed and consulted, and their perceptions are taken seriously.
  6. Adult-initiated, shared decisions with children – Adults initiate, but both children and adults are responsible for making decisions.
  7. Child-initiated and directed – Children initiate and implement.
  8. Child-initiated, share decisions with adults.

The first three steps don’t count as involvement. It is emphasized that step number eight is not always necessary, it depends on the project and the fact that participation must take place in the way that is best suited for children/young people. The model’s purpose is to show different forms of participation. It can be a useful tool when working with user involvement.

Another widely used method in research projects is Participatory Action Research (PAR). This means people in the local community or an organization, i.e. persons in/near the target group, conduct research with educated researchers. The method aims at researching with and not on, and is thus very practical. It’s goal is to counteract power differences and increase the power of the marginalized groups, empowering people to take an active role in engaging in community improvements, as well as capturing issues and strategies relevant to the target group.

The Spaces and Places project in Canada has been carried out by this method. Researchers, service providers and youngsters of the Mi’kmaq indigenous people in Nova Scotia got together to explore how young people experience the local community and how it affects their health and well-being. In the article In This Together: Relational Accountability and Meaningful Research and Dissemination With Youth (2017), the young project team members discuss their participation and important factors that made the project successful. They draw attention to the importance of spending time getting to know each other, each other’s culture and agenda so that they entered the project with shared understanding and unity about what they should look at, why and how. It was important and personally enriching for the youngsters to take responsibility for the project, and it was important that training, adaption and changes were made along the way. The researchers emphasize it’s important to consider the youth’s knowledge as being of equal importance to the professional, and to meet the young people on their premises (e.g. venues, time, strategies). It was important to include the youngsters throughout the project so they had a great deal of influence and control regarding design, research questions and methods from the beginning, and how the dissemination of findings, recommendations and experiences should take place.

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.

Similar experiences and findings are described by Paulsen in Ungdommers erfaringer med medvirkning i barnevernet [Youth experiences with participation in child welfare], who have conducted interviews with youth in the ages of  16-26 years, with focus on their experience with participation in child welfare and factors that affect the degree of participation. The youth told that important prerequisites were good information and being involved in meetings, but first of all a well established relation was crucial for the desire to participate and the degree of influence on decisions. Employees that listens, recognizes, guide them though decisions and not automatically assume the best for them, made it easier to tell their meanings out loud and trust that these are affecting decision-making. Many of them told that they often ended up with not sharing their thoughts or not showing up at meetings because they were not listened to and taken seriously. An important conclusuon is that the degree of participation is affected by the number of meeting points  between youth and employees, and that continuity increases the opportunities of participation. In 2000, Nigel Thomas conducted a study among children under the care of child welfare regarding how they viewed their own participation. The children were asked to rank important factors affecting their participation on a scale from 1 to 9, 1 being most important. The results were as following:

  1. Being listened to
  2. To say his/her own meaning
  3. Getting support
  4. Getting to know what is happening
  5. Multiple choices
  6. Time to think about things
  7. No pressure from adults
  8. Adults making good decisions
  9. Getting what they want

A measure for more service user involvement at system level are service user council/committee/panel, a gathering of people with personal service user experience or representatives for service users that are given an advisory function to a health authority, departments in health services, planning or working groups in municipalities/counties or supervisory agencies. At a political level, the service user councils are involved before a political decision is made, in the forms of councils or committees who makes premises based on their experience in the field. Many counties, municipalities and health authorities have their own children/youth councils. In particular, in the context of the Norwegian municipal and regional reform, the Government has emphasized youth councils as a relevant and important agency. In 2018 on their web page, they advocate that each municipality should discuss with the region`s youth about how to solve this in the best way possible. They point out the following criteria of success:

  1. Real influence – Inputs have real impact in the municipality, and one has the opportunity to bring forward new initiatives.
  2. Contact person in the municipality – Contributes to continuity in the council. Collecting relevant cases in the municipality and has the resources to be a intermediary between council and municipality.
  3. Clear mandate – The council`s rights, duties and opportunities are clear, and ensure anchorage and legitimacy.
  4. Anchoring and interest in rapporteurs and councilors – A political and administrative management who requests ideas and views with respect and acknowledgement.

Februrary 2018, Norway`s first service user council for child welfare were started, consisting of members of the service user organizations Landsforeningen for barnevernsbarn [Association for Children in Child Welfare], Forandringsfabrikken [The Change Factory], Voksne for barn [Adults for Children], Barn av rusmisbrukere [Children of Drug Addicts], Mental Helse Ungdom [Mental Health Youth], Norsk innvandrerforum [Norwegian Immigrant Forum], Elevorganisasjonen [The School Student Union of Norway] and Organisasjon for barnevernsforeldre [Organization for Child Welfare Parents]. They are going to promote the service user perspective in cases and processes, and contribute to children and parents being heard.

In 2015, Anders Bjørkås Knuten conducted a study of service user council in a Children and Adolescent`s Psychiatric Out-Patient Clinic in a large city in Norway, aiming to get a picture of how a service user council works in the light of influence from service user representatives to representatives from the service and the consequences affecting the service. Seven participants from the council were interviewed about their experiences. The findings enhance several challenging areas: First of all, there were different experiences and competence among the representatives with this type of work, something that clearly affected the degree of participation, influence, initiation of cases on the agenda and the outcome of impact on the service. There is therefore a need for more competence among both service user representatives and representatives from the service. Solutions to this that had been tried were offering module-based training for the service user representatives, but few of the participants had begun or completed this. There were also challenges related to how the experiences from the children/youth actually using the service are obtained. Increased use of service user surveys and creating a service user forum at the service department in the purpose of exchanging experiences and bringing forward issues were highlighted as possible ways to gather these.

Peer support specialists (people that are employed in health services because of lived experience with mental health or drug abuse problems) are an action that bring forward user participation and user satisfaction in health services, lately given increasingly attention. UngArena is a peer support specialist service in Norway for children and youth in the ages of 12-25 years, developed by Mental Health and Mental Health Youth on the basis of status, deficiences and needs revealed in a study of youth experiences with mental health, work and vulnerable situations in life from 2013. UngArena is an easily accessible low-threshold service with long opeing hours, free of charge and without the need of reference and waiting lists, which offer conversations or practical help with big or small problems for children and youth. On the Arena-centers, youth are met by voulenteer young adults with lived experience with training and by professionals (psychologist, consultant of drug abuse, social worker, nurse and counsellor of study), with the opportunity to be referred to other services if needed. UngArena is based on a young-to-young-method, where the intention is to create trust and increase safety though peer work, to achieve support and help on youth premises in youth language. In time to come, more Arena-centers will be established in more cities, in cooperation with municipalities, voluntary agencies and professional communities. This is in accorance with the norwegian governments priorities and goals regarding early intervention, low-threshold services and preventive work for public health for children and youth.

Venues and methods

Organizations, foundations and voluntary agencies

  • 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.
  • Wisdom2Action – Supports researchers, community based organizations, educators, policy makers and others working to improve the mental health and wellbeing for vulnerable children and youth in Canada.

Literature

For literature in norwegian, see our norwegian resource pages.

Public documents

Books

Reports and publications

Research articles

Links for more information

For links to norwegian pages, see our norwegian resource pages.

How KBT works with this

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.

My voice matters is a three-year development project aiming to develop a method for real user involvement for children and youth as service users. The goal is to enable children and youth  to bring forward their experiences with the services with their own voice.

The project is based on User Interviews User (UIU) as a methodology, where former service users interview current users of a service. In this project, we have young people/young adults in the ages of 18 and 23 as project team members, who themselves have experience with the use of mental healthcare services. These project team members are trained in the UIU-method, and participates in designing the interview guide, conducting interviews, analysis, writing report and presenting the results in the dialogue conference with the service and participants of the projects. Here, we discuss the findings and how to work with them further on, before we incorporate these results in a final report, which is given to the service for future work. One year after the project has ended, we will meet the service to follow this up. The goal is to make sure that the services are continuously developed after children and youths experiences and views.

In 2015, we evaluated Children’s and Young People’s Psychiatric Out-Patient Clinic of St. Olavs Hospital in Trondheim, where we interviewed service users between the ages of 16 and 18. In the fall of 2017, we evaluated the outpatient offer to service users between the ages of 12 and 18 at the Children’s and Young People’s Psychiatric Out-Patient Clinic of Levanger Hospital, which report will be published soon. In the fall of 2018, we are going to evaluate Team Children and Youth at Stangehjelpa, the mental health service in Stange municipality. We are currently working on planning and recruiting this evaluation.

The project is funded by Extrastiftelsen through Rådet for psykisk helse.

In 2017, KBT entered a collaboration with Regional Centre for Child and Youth Mental Health and Child Welfare Midt-Norge (RKBU Midt-Norge). The goal of the collaboration is for both parts to strengthen the user perspective and make children and youths knowledge valid in research, service development, teaching and dissemination. We aim to work together with projects, and KBT will contribute with user competence in this four areas. Together with us in this collaboration are the volunteering adolescents from “My voice mattes” in both planning and conducting. We have already contributed to teaching in the Master`s program “Children and Young people`s Mental Health” in 2018.

About Anne Benschop

Works as a project team member in KBT. Works with Canada-Norway research collaboration, web page and social media.

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