Service user involvement – a human right

By Silje Margrethe Jørgensen | 3. August 2022

Text by Anne Plathe, 2017 

 

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:

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.

What does the Norwegian law say?

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.

Research on user involvement for children

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.

 

A paradigm shift

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.

The book “Samproduksjon i forskning” [“Co-production in research”] has a chapter dedicated to children as co-researchers. It highlights important concepts; the child perspective and child’s perspective, where the child perspective represents the researcher trying to put himself in the child’s place on the basis of theory/observations. Contrary to the child’s perspective where the child itself communicates it`s experiences from it`s own point of view. The key here is what perspective the researcher is working from and how.
The authors list several examples of methods for how the child can produce knowledge itself:
  • drawings
  • video recordings
  • photographs
  • cartoons
  • postcards
  • records as a starting point for conversations
  • stories that are activated through pictures and symbols
  • by  interviewing other children themselves.

The researcher has the responsibility to facilitate both the right to participation and the need for protection.

Children as important contributors in research

When children understand that they are important contributors in research it can be difficult to say no and withdraw. At the same time it is important to recognize children’s competence in determining if they want to participate or not. The researcher’s responsibility includes a vigilance and balance between this, by providing clear information face to face about the research and how to withdraw consent.
Children must decide for themselves where  they want to participate in the process. The authors point out that co-production in research to a greater extent can contribute to change because the actors involved are closer to the phenomenon that are being explored.

Honneth's theory of recognition

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.

Ethical considerations about user involvement for children and adolescents

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 say something about research design, inclusion and exclusion. Thus they are 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.

Other publications that put this into focus is Historien om Stina [The story about Stina].  This is a report from the County Governor after inspection of Kristiansand Municipality, Sørlandet Hospital, Bufetat Region South, Næromsorg South and Aleris Ungplan & BOI 27.07.18 – 07.02.18. The report is  about a young girl`s journey through child welfare and other services, and describes, among other things, challenges with assessing the degree of participation where many different services are involved.

Ethical challenges in qualitative research

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,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
  • respect.

Using mindful presence consciously in contact with children will help the adults cope with the ethical dilemmas.

 

Law regulations on childrens participation in medical and health related research

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.

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