Presentation to Centre for Studies of Childhood and Youth5th International Conference. "Researching children's everyday lives: socio-cultural contexts "

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

2. 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?

3. Approach
• Literature review
• Critical inquiry
- workshops and presentations
- blog
- Twitter and other social media
• Action research in two case studies

4. 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

5. 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

6. ““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).

7. 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)

8. • 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)

9. 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).

10. 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

11. 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

12. 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

13. Workshops

15. Involving young people in a pilot
clinical trial

16. 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.

17. 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.

18. 2013 workshop: ‘Embedded’
participation is…
• Integrated and integral
• Meaningful
• Well-supported
• Inclusive and flexible
• Realistic
• Collaborative and sharing learning
• Demonstrates impact

19. 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?