Co-design of services in partnership with children, young people and young adults
Healthcare decision-making involving children and young people can be a difficult process, especially in situations of serious illness. When children are ill, adults have an understandable desire to protect them from difficult decisions and to shield them from unpleasant information. Yet, children want and need to be heard by healthcare professionals and to be provided with age-appropriate explanations and information in order to help them cope with the consultation and treatment processes. There is a need for better training for professionals in dealing with both children and parents and more research is needed into how participation works in practice and into the impact of factors such as social exclusion or other forms of disadvantage on participation .
Participation covers a broad continuum of involvement in decisions; it is a multi-layer concept involving many different processes. For example it can simply mean taking part, being present or consulted or, alternatively, it can denote a transfer of power so that participants’ views influence decisions with hierarchical or non-hierarchical distinctions between levels of participation according to the degree of power that is shared or transferred or the circumstances of the participating children .
The value of participation of children and young people in public decision-making is well accepted but there is an urgent need for internal and external evaluations of children’s involvement . Children have demonstrated that their level of understanding and interest qualifies them for a place in discussions about services for their age group. Collaborative work with children and young people is necessary for appropriate service development .
Children and young people clearly wish to have some say in the way decisions are made about their lives and generally do not believe that they have adequate appropriate opportunities so to do. Genuine and effective participation depends on several conditions: opportunity and choice in ways to participate, access to relevant information, the availability of a trusted advocate, proper resourcing, and supportive policy and legislation. Feedback from children and young people is also required to indicate whether it is happening.
Despite the importance of consulting with children, their views, in the past, were rarely sought nor acknowledged within the healthcare setting. Children were rarely involved in decision-making processes and appeared to occupy a marginalised position in healthcare encounters yet children, like adults, want to be partners in their own health care, especially those with conditions that will require lifelong engagement with health professionals .
For example, in a cross border project against trafficking and exploitation of migrant and vulnerable children in South East Asia, Save the Children UK have actively engaged children and found that their participation in concrete actions and policy advocacy protects them from trafficking. It is only by involving children and young people in the project that lasting positive changes can be achieved in the children’s lives.
In the project children are actively involved from the beginning when the needs assessments are undertaken, to planning, implementation through to monitoring and evaluation. Children conduct research on migration and human trafficking situations in their communities. Children are present in planning and discussing their project ideas with other project partners. With the support from adults, children and young people form their own committees and groups to carry out project activities. The project aims to develop the full leadership potential of children as partners, bringing them forward as the best champions for their own cause .
At Phoenix Children’s hospital a children’s council has been set up to empower children to take an active role in the decision-making process of the hospital including robustly challenging members of the Executive team to deliver on promises made in response to proposals from the children.
Through the work of the Emily Center, patients are empowered to find out more about their illnesses, and those of people who are close to them, to raise educational levels and enable children to participate in decisions about their own care in a more meaningful way. The real benefits of engaging children in this way are not just that the children themselves develop and improve but also that the decisions that are made are far wiser than would otherwise be the case if children were not involved from the outset.
In 2010 the Royal College of Paediatrics and Child Health and their Young People’s Health Special Interest Group published their guide to the participation of children and young people in health services . The guide provides key information to ensure the safe, meaningful and ethical participation of children and young people within the delivery of health services and practically demonstrates how child health service providers can contribute towards creating a culture of participation within child health services. Participation, it says, involves a continuum from involvement of individual young people in decisions affecting their daily life to engagement of larger groups of young people making strategic decisions about the use of substantial healthcare resources.
There are some key definitions that need to be highlighted:
Involvement
Describes the inclusion of children and young people in some form of decision making process
Consultation
The process by which children and young people are asked for their views and opinions
Participation
The process by which individuals and/or groups of individuals can influence the decision making process and bring about change
Manipulation
Adults can hijack or influence a participation project for their own means. Manipulation may involve exaggeration of the involvement of young people, coercing young people into projects without their informed consent or briefing young people to such a degree that the views expressed are those of the adult
Decoration
Young people may be represented at an event but not actually involved in the event or proceedings, the classic example being a child who presents a gift to a visiting dignitary without knowing who the dignitary is, why they deserve recognition or not being involved in the decision to present the gift.
Tokenism
This describes the situation where young people are offered the opportunity to participate but the project has been badly planned or poorly implemented. They may have no choice over the style of form of the process and too little time to either formulate an opinion or express it. The pretence is that children are being involved and will influence decisions but the reality is that the process is unlikely to be representative of young people’s views and that their views will not be taken seriously or influence decision-making.
For example, asking children to complete a patient-satisfaction survey pending an NHS Trust’s application to become a Foundation Trust but then not using the results of that survey during the application as the views are at odds with the views of the management team.
The Royal College guidance concluded that it is important to avoid non-participation such as tokenism, manipulation and decoration. The evidence base for children and young people’s participation is limited with no high quality systematic reviews of the effects of involving children and young people in the design and development of health services. Future research should concentrate on health outcomes and consider the cost effectiveness of different methods of participation and to how participation might reduce health inequality.
In 2013 the Office of the Children’s Commissioner for England launched a new publication called We would like to make a change championing children and young people’s participation in strategic health decision-making. The foreword by the then Commissioner, Dr Maggie Atkinson, highlights that good practice in the participation of children is not commonplace. There is no coherent national programme of activity to proactively encourage local bodies to include children and young people in strategic health service commissioning or other vital decision-making about NHS provision.
Dr Atkinson was clear that children would like to take part and have their views taken seriously with as wide a range as possible to take part and to be shown that their opinions are valued.
It was hoped that the report would:
• Provide assurance to health planners and commissioners that children are sensible, knowledgeable and valuable contributors to health decision-making when given a seat at the table, asked to represent their generation and supported to do so. They should not be treated as passive recipients who either have no views or whose views must defer to those of adults. Nor should their participation be feared because they may ask for the impossible or destabilise services if given a voice.
• Be used by areas and organisations to improve the way they involve children in strategic health decision-making. Many children have regular personal experience of a range of health services. All will have had at least some contact and experience. They are service users and have a right to have their views taken into account .
Locally, there is already excellent practice at the University of Salford Children, Young People & Families (CYP @ Salford) workstream . The CYP @ Salford recognises that the participation of children and young people in the services they use is essential if meaningful improvements to their lives are to be achieved. They believe that this principle extends to the participation of children and young people in all aspects of research; a model that could do well to be replicated elsewhere.
There has been some excellent work developing a child patient survey for urgent and emergency care in a collaboration between the Royal College of Emergency Medicine, the Royal College of Paediatrics and Child Health, the Picker Institute and others . Future versions of this tool would benefit from adaptation to be able to be used by pre-verbal children and those with learning difficulties.
This Not Just a Thought… project takes involvement of children, young people and young adults to the next level. This wasn’t about consultation; it wasn’t about a series of workshops; it wasn’t about decoration or tokenism; it absolutely was about true co-production and co-design from the outset and that is why this has been one of the most enjoyable professional projects to work on – because of the expertise that the children, young people and young adults have brought to this project, without which it would never have progressed.
A great injustice is done to children, young people and young adults when society fails to listen to their views, fails to facilitate their true participation, through co-design and co-production models, in decision-making processes and fails to value their contributions towards shaping a better society for everyone in the future.
Professor Andrew Rowland
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Drawing © Bradley Graeme Rowland and Kerrie-Mai Rowland
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