Embedding children & young people’s participation in health services and research

1. Embedding children & young people’s participation in health services and research Louca-Mai Brady *Picture courtesy Investing in Children

2. My background • PhD: embedding CYP’s participation in health services and research • Freelance researcher, including work on PPI • Background in applied social research, including leading on CYP’s involvement at NCB Research Centre • Member of INVOLVE

3. Key issues • Despite increasing profile of CYP’s participation, there’s a lack of evidence about how to ensure it is meaningful, effective and sustained • Limited examples of how guidance is applied in practice • Variable understanding of how principles and practice of public involvement, engagement and CYP’s participation intersect

4. Where I want to get to: Embedding children and young people’s participation in health services and research: • How is CYP’s participation defined and operationalised? • What does it mean to ‘embed’ CYP’s participation within health services and research? • What needs to be in place for participation to be meaningful, effective and sustainable - at different levels, for different groups and in different settings? • What are the barriers and challenges to meaningful, effective and sustainable participation and how can these be addressed?

5. The journey • Literature • Critical inquiries • Action research in two case studies

6. Navigating the landscape • Health & Social Care & Children and Families Acts • New NHS structures and processes – Healthwatch, CCGs, NHS England, Public Health England & changes to public health & local authorities • Continued NIHR commitment to public involvement • Children and young people’s participation, rights and the UNCRC • Campaigning work of organisations working with CYPs • Sociology of childhood • Growth of citizenship and public engagement as issues in policy and practice

7. “If the fundamental purpose of the Government’s proposed changes to the NHS – putting the patient first – is to be made a reality, the system that emerges must be grounded in systematic patient involvement to the extent that shared decision making is the norm.” NHS Future Forum Patient Involvement and Public Accountability Report (June 2011).

8. Children’s Health Outcomes Forum: Recommendation: All health organisations must demonstrate how they have listened to the voice of children and young people, and how this will improve their health outcomes Government response: The Government’s modernisation of the health and care systems will improve the quality and efficiency of the services children, young people, and their families receive …with children young people and their families involved in decisions about their care and the design of services

9. UN Convention on the Rights of the Child (UNCRC) Article 12 . Every child and young person has the right to express his or her views freely in all matters affecting them Article 13. Every child and young person has the right to freedom of expression, including the right to all kinds of information and ideas Article 24. Children have the right to good quality health care and information to help them stay healthy

10. General comment Article 12 highlights the importance of children’s participation...This includes their views on all aspects of health provisions, including, for example, what services are needed, how and where they are best provided, barriers to accessing or using services, the quality of the services and the attitudes of health professionals, how to strengthen children’s capacities to take increasing levels of responsibility for their own health and development, and how to involve them more effectively in the provision of services, as peer educators. States are encouraged to conduct regular participatory consultations, which are adapted to the age and maturity of the child, and research with children, and to do this separately with their parents, in order to learn about their health challenges, developmental needs and expectations as a contribution to the design of effective interventions and health programmes” (UN, 2013).

11. Key issues from July workshop: who is involved and how? • Equality of opportunity and reflecting diversity • Creating opportunities for participation • Making participation appealing and relevant to CYP • Roles and responsibilities for participation • Support for staff

12. Challenges and barriers • Complex and changing landscape • Prioritising CYP’s participation within existing structures and processes • Understanding participation and children’s rights • Power • Challenges to recruiting young people and planning involvement

13. Case studies: • NHS Trust working with a voluntary sector organisation to support CYP’s participation in the development and delivery of a Community Children’s Health Partnership • Young people’s involvement in an adaptation and feasibility study of an intervention for young people who misuse alcohol and drugs

14. Characteristics of action research • Research in action, rather than research about action • Collaborative democratic partnership • Research concurrent with action • Sequence of events and an approach to problem solving Coghlanand Brannick, 2010

15. Community Children’s Health Partnership • Working collaboratively with groups of staff, young people who have been involved in participation activity and other stakeholders, through a series of workshops and other activities • First cycle: developing a strategy • Second cycle: putting strategy into practice

16. Stage 1: Process Feb 14 Nov 13 Dec 13 Sept 13 Oct 13 Continues bi-monthly Core group meeting Core group meeting Participation strategy workshop 1 Participation strategy workshop 2 Participation strategy workshops 3 & 4 – includes young people’s group Stage 2 Young people’s group Focus groups with parents, managers & CCG

17. Whole systems approach to participation* • Culture: demonstrating a commitment to participation • Structure: planning, development and resourcing of participation; including identifying key staff, roles and resources required for implementation • Practice: ways of working, methods of involvement, skills and knowledge required • Review: recording, monitoring and evaluation systems which will enable organisation to evidence change affected by participation *Social Care Institute of Excellence (2006) Practice Guide 11

18. Workshops

21. Young people’s cover letter for strategy

22. Involving young people in the YSBNT study

23. Plan A… • Recruit an advisory group of 10-12 young people who had previously used drug and alcohol services and would be actively engaged throughout the project. • Members of this group, along with parent representatives, would then be supported to attend trial steering committee meetings.

24. YPs involvement in Y-SBNT: what have we done • So far we have engaged 9 young people from 4 different parts of England. • London, Cornwall, Bristol & Didcot. • 6 female & 3 male. • There have been 10 meetings attended by one or more young people. • Met with 4 YP on more than 1 occasion. • Bristol – work with Drugs and Young People Project. • Met with 3 YP, met with 1 YP on 4 further occasions, incl. at KFC & Costa.

25. What have the meetings involved? • Commenting on project leaflet and information sheet. • Flipchart exercise to think about the important people in YPs life and why they are helpful/supporting or unhelpful/unsupportive. • Card sort exercise about what YP find helpful, or what are barriers, to YP engaging with services. • Writing an open letter to an important person about what it’s like to have a problem with alcohol or drugs, and how YP would like that person to help them. • Drawing YPs social network so we can have ‘real’ examples in the Y-SBNT intervention. • Commenting on a worksheet (which will be used in the Y-SBNT intervention) which looks at which areas of life YP might want to work on during treatment sessions. • Giving ideas for what’s important to include in a newsletter for YP involved with the project. • Meeting with the 2 trial researchers to test all the questionnaires.

26. What we’ve learned • YP’s involvement has been extremely helpful and has informed key elements of the intervention. • Managing sensitive nature of topics discussed. • Relationship between Researcher & YP. • Complex needs & range of services accessed by this group of YP – e.g. mental health problems. • This is a seldom heard and group of YP who can be difficult to access and to keep engaged. • Traditional advisory group model in one location does not seem to be effective. • Flexible, local and YP-centred engagement has worked better but YP also want to meet the whole team and each other! • Different understanding and expectations about what is possible for YP’s involvement– also influenced by time & other resources.

27. Plan B • Shift from a traditional Advisory Group model to something more localised & led by YP. • On-going recruitment. • More workshops or consultations with YP in services they use and/or near where they live. • If YP are then interested in on-going involvement in the project will be given opportunity to be involved in smaller and more flexible young advisors group. • Options for input via email, text, Skype & social media (eg Facebook) as well as face-to-face. • Report to trial steering committee with input from/attendance by YP if interested.

28. ‘Embedded’ participation is…? • Integrated and integral • Meaningful • Well-supported • Inclusive and flexible • Realistic • Collaborative and sharing learning • Demonstrates impact

29. Young Health Participation • Blog about CYP’s participation in health and social care, including presentations and reports from recent workshops: www.younghealthparticipation.com @louca_mai louca.brady@uwe.ac.uk

30. Your thoughts… • What is your response to the key characteristics of ‘embedded’ participation which emerged from the earlier workshop? • What might this mean in practice for health services and research?