The 132-seat hospital auditorium was full, it was standing room only as Jason our Co-Chair of the Youth Advisory Group took the stage to open the youth engagement showcase. A first for the Women’s and Children’s Health Network after 140 years, our children and young people took control of the Grand Round assembly of hospital clinicians to tell them and the world that youth voice matters! The YAG had finally arrived at its goal to educate the organisation on the importance of young people’s voice and activation in healthcare planning. What resulted was truly unexpected. In 60 minutes, the YAG demonstrated to the organisation that healthcare planning is safe in their hands.
As adults, it is our collective responsibility to ensure that we provide meaningful opportunities and moments to include children and young people in decision-making. In healthcare, we are not immune to the movement over the past 25 years to include the perspectives of children and young people in organisational governance.
The Women’s and Children’s Health Network (WCHN) is South Australia’s leading provider of health services for children, young people and women. The WCHN works in partnership with clients and families, the community and other service providers to promote, maintain and restore health. For the past three years, the organisation has chosen to partner with children and young people, through the establishment of a Youth Advisory Group (YAG) and operational committee to the YAG, WCHN Kids Klub.
The physical, mental, emotional, developmental and intellectual needs of children are very different from those of adults, and these needs change with time.
A significant percentage of our service delivery is aimed at children and young people and in 2015 the organisation deliberately set out a strategy to ensure that the voices of children and young people are heard. The physical, mental, emotional, developmental and intellectual needs of children are very different from those of adults, and these needs change with time. Coupled with the complexities of healthcare provision, particularly in acute and community health services, it was time for a complete solution to consider the different interpretations, perspectives and impacts healthcare planning and design has by asking children and young people directly.
WCHN decision making is made with children and young people, especially when those decisions have an impact on their wellness, wellbeing, resilience, health and recovery. Children and young people have an important role to play in community engagement and ideas, which we must tune in to. With the support of the YAG and Kids Klub, we are seeing a real difference in participation, where decisions on the important stuff are made with children and young people. By respecting, developmental milestones (influenced by biological, psychological and social factors) our two peak groups are underpinned by developmental competence principles. In short, we recognise that the interpretation, application and conceptualisation of data and ideas for children and young people is different to adults. Children and young people respond to a diversity of social cues and it is our responsibility to make sure they have a supported seat at the decision-making table.
YAG is committed to developing a healthy and resilient health system for children and young people, designed in partnership with children and young people. YAG members provide comment, ideas and research on areas relating to child and youth health. They focus on resiliency, recovery, wellbeing, wellness and health. They are the peak child and youth body for South Australia, with expertise through experience as previous patients, carers, siblings or friends of patients accessing a service within the Women’s and Children’s Health Network.
What is YAG?
Every three months the group rigorously audits a service at the Women’s and Children’s Hospital, reviewing the service’s ability to deliver safe, quality and comfortable care to teens and children.
Chaired by a young person from the WCHN, this is the peak body for youth and children for the WCHN. The group meets quarterly and operates as a consultative group, comprised of 20 young people aged 12-25. Young people lend their advice, opinions and lived experience to influence better health outcomes. The group has a yearly activity plan. Every three months the group rigorously audits a service at the Women’s and Children’s Hospital, reviewing the service’s ability to deliver safe, quality and comfortable care to teens and children.
What do they do?
- Meet monthly to raise issues, ideas and solutions to problems that contribute to the promotion of a healthy and resilient health system for children and young people.
- Make recommendations and suggestions on ways to enhance the quality and quantity of health services, procedures, policies, programs and practices that affect children and young people in South Australia.
- Inform the hospital and health network executive, staff, clinicians and other hospital employees of the work of the committee.
- Provide a platform for children and young people to participate in democratic decision making and develop scholastic and vocational skills.
- Apply their lived experience to quality-based audits.
- Advocate and adjust organisational responses to development making to ensure children and young people are included.
- Run health promotion programs and activities to support the mission of the YAG.
A child and young person’s fingerprint is across all aspects of the governance of the Youth Advisory Group. The Terms of Reference (view here) have been written so they attend to the tenets of child and youth language and story-telling, agenda planning. Negotiations with stakeholders who choose to present at the YAG is conducted with the youth chair and the evaluation reports are written by the members.
In three years, the group has been instrumental in health service reform within the organisation. They have developed two frameworks to support child and youth voice in safety and quality auditing and communications, with one of these models being adopted by the NHS (known as the ‘15-Step Challenge’). The 15-step safety and quality audit gives the power to the child and young person to have an individual and collective say about their first impressions of the health service environment and what could be done to improve overall quality of space. They have coordinated eight audits in three years, leading to refurbishments of the neurology clinic, hospital school, café and hospital foyer.
The YAG has developed guides to support wayfinding at the Women’s and Children’s Hospital, known as the Youth Guide to Places and Spaces (view here) and has developed new materials to ensure that children and young people understand their healthcare rights and responsibilities. These tools have included a colouring book, emoji postcard and 3D viewfinder.
A feature of the patient decision-aid was to use cartoon monsters to demystify the aspects of shared decision-making…
The YAG also enables clinical and corporate divisions within the health network to develop quality improvement activities. They have worked with Paediatric Emergency to design a challenging behaviours campaign and passport to reduce anxiety faced by children who are accessing the department for the first time (view campaigns here). They have worked with the Deputy Executive Medical Director and the Clinical Practice Development Unit to design a shared decision making educational campaign known as TUNE (see the video here) and designed a patient decision-aid to educate the community. A feature of the patient decision-aid was to use cartoon monsters to demystify the aspects of shared decision-making (view here with the monsters appearing on page 32 – 36). For a full list of the 2017 achievements, view the YAG annual report (view here) and visit our honour board (view here).
In June 2018, the chair of the YAG joined the eight other chairs of the WCHN governance structure to present a showcase of their overall achievements with the Minister for Health and Wellbeing. There was not a seat empty as the YAG not only celebrated their success, but more importantly demonstrated that when provided with the opportunities, they can make real impact and thrive. Our current Chair, Jason Cutler, says that the YAG says that the group is more than just a collection of individuals with patient experience, it is a united team committed to ensuring that best healthcare is delivered every day.
Tahlia, a 17-year-old member of the YAG who has been part of the committee for two years, says that the YAG shifts the power in favour of the child and young person, providing a much needed balance to ensure that children and young people are movers and shapers of healthcare, rather than users and choosers. In the next two years, the YAG will continue to shine by hosting a health conference on youth health matters with Port Adelaide Football Club, evaluating the TUNE training package and supporting the build of a new Women’s and Children’s Hospital.
To find out more about the YAG, contact the Director Consumer and Community Engagement, Allan Ball on 08 8161 6935 or firstname.lastname@example.org. Visit www.wch.sa.gov.au/consumerandcommunity for more details about WCHN’s unique approach to consumer and community engagement.