Embedding CYP’s participation in health services & research
1. Embedding children & young people’s
participation in health services and
*Picture courtesy Investing in Children
2. My background
• PhD: embedding CYP’s participation in
health services and research
• Freelance researcher, including work on
• 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
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?
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
• 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
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. • Article 12 . Every child and young person has the
right to express his or her views freely in all matters
• 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
UN Convention on the Rights
of the Child (UNCRC)
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
• Creating opportunities for participation
• Making participation appealing and
relevant to CYP
• Roles and responsibilities for participation
• Support for staff
12. Challenges and
• Complex and changing
• Prioritising CYP’s participation within
existing structures and processes
• Understanding participation and children’s
• Challenges to recruiting young people and
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 in action, rather than research
• Collaborative democratic partnership
• Research concurrent with action
• Sequence of events and an approach to
Coghlan and Brannick, 2010
15. Community Children’s Health
• 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
16. Stage 1: Process
Sept 13 Oct 13 Nov 13
strategy workshop 1
strategy workshop 2
3 & 4 – includes
Focus groups with
17. Whole systems approach to
• 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
21. 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
22. What have the meetings involved?
1. Commenting on project leaflet and information sheet.
2. Flipchart exercise to think about the important people in YPs
life and why they are helpful/supporting or
3. Card sort exercise about what YP find helpful, or what are
barriers, to YP engaging with services.
4. 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.
5. Drawing YPs social network so we can have ‘real’ examples
in the Y-SBNT intervention.
6. 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.
7. Giving ideas for what’s important to include in a newsletter
for YP involved with the project.
8. Meeting with the 2 trial researchers to test all the
23. 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
• Different understanding and expectations about what is
possible for YP’s involvement– also influenced by time &
24. 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.
25. ‘Embedded’ participation is…?
• Integrated and integral
• Inclusive and flexible
• Collaborative and sharing learning
• Demonstrates impact
26. Young Health Participation
• Blog about CYP’s participation in health
and social care, including presentations
and reports from recent workshops:
Notes de l'éditeur
INVOLVE – since 2007
Freelance researcher – incl GSTT training and HTA PPI study
NCB – incl development of guidance, PEAR project and work with MCRN CC
Health and Social Care Act 2012:
strengthens the collective voice of patients
Emphasis on the views and experiences of patients, carers and the public helping to improve the quality of health and social care services.
C&F Bill “The Government has also paid particular attention to Article 12 – which gives children the right to express views on matters affecting them - and many of the provisions in the Bill take account of consultation with children and young people during their development
General comment on Article 24: Article 12 highlights the importance of children’s participation, providing for children to express their views and to have such views seriously taken into account, according to age and maturity. 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...
‘ Participatory intent’ (Greenwood, 1993) I intend to use an action research approach in order to understand the systemic arrangements required for CYP’s participation to be embedded effectively, but am also aware that the uncertainties inherent in the process mean that I need to remain flexible and open to alternatives.
SCIE whole-systems approach to participation has four elements that we considered during:
Culture – Ethos of an organisation shared by all staff and services users which demonstrates a commitment to participation including an ongoing process of capacity building and information available to children, young people, parents and carers to help them participate.
Structure – The planning, development and resourcing of participation evident in organisation’s infrastructure, with key staff, roles and resources identified for its implementation.
Practice – The way of working, methods of involvement, skills and knowledge which enable children and young people to become involved.
Review - The recording, monitoring and evaluation systems which enable an organisation to evidence change affected by participation. This should be shared within the organisation, with partners and the commissioners.
LT to handover to LMB after this slide.
We will retain a core Young Advisors group who will meet at regular intervals throughout the project, but this group is likely to be smaller and more flexible than anticipated with YP moving in and out of the group if necessary, and when more or less interested in different aspects of the project (see appendix I). So young people’s involvement will no longer centred around 2-3 monthly meetings but start with smaller consultations based at services or other locations convenient for young people, as well as email, phone or Skype conversations when this is more convenient or timely. We will try and arrange at least two face-to-face meetings for young advisors in the next year and keep in regular contact with young people in between. These consultations may be co-facilitated by YA members if they are available and interested (some are peer mentors or have been involved in training). If interested young people will then be given the option for on-going involvement and invited to become a young advisor, but there will be no obligation. This will give young people, and services, a chance to find out more about the study and potential involvement without making an on-going commitment at the outset.