Lm Brady cscy conference 1.7.14

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

Louca-Mai Brady

*Picture courtesy Investing in Children

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?

Approach

• Literature review• Critical inquiry

- workshops and presentations

- blog

- Twitter and other social media• Action research in two case studies

Background• Constructions of childhood: developmental

approaches vs sociology of childhood• Children and young people’s participation,

rights and the UNCRC• Growth of citizenship

and public engagement as issues in policy and practice

Navigating the landscape• Legislation: Health & Social Care & Children and

Families Acts• CYP’s participation in new NHS structures and

processes, incl NHS Constitution• Children’s Health Outcomes Forum• Tools and quality criteria: Hear by Right, You’re

Welcome• Continued NIHR commitment to public

involvement & increasing interest in public involvement with CYP

““This expectation for patient and public participation has no age limit. Children and young people…should be encouraged and facilitated to participate in decisions about their own care and, more broadly, about the health and social care services and policies that affect them”.

Annual Report of the Chief Medical Officer 2012 - Our Children Deserve Better:

Prevention Pays (DH, 2013).

Participation

A process by which individuals influence decisions which bring about change in themselves, their peers, the services they use and their communities

Participation

Works (2010)

• Article 12 . Every child and young person has the right to express his or her views freely in all matters affecting them

• Article 24. Children have the right to good quality health care and information to help them stay healthy

UN Convention on the Rights of the Child (UNCRC)

General commentArticle 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).

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

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

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

Workshops

Involving young people in a pilot clinical trial

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.

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.

2013 workshop: ‘Embedded’ participation is…• Integrated and integral• Meaningful• Well-supported• Inclusive and flexible• Realistic • Collaborative and sharing learning• Demonstrates impact

Key questions• CYP as ‘objects of concern’ or ‘person’s with

a voice’? Patients and/or citizens?• Power: adult/child, professional/service user,

well/unwell, researcher/researched• Which rights? participation, protection or

provision? Individual and collective rights• Participation – but within adult power

structures, with adult-led agendas and with adult agreement & support?

• Participation/involvement/engagement/voice?