This presentation was delivered to the Leeds Children's Hospital Research Forum, where the practicalities of involving and engaging children, young people and families in research was discussed.

1. GETTING TO GRIPS WITH involving
AND engaging CHILDREN, YOUNG
PEOPLE AND FAMILIES IN RESEARCH
Ruth Nightingale and Simon Stones
Thursday 23 August 2018
Leeds Children's Hospital PPI Research Forum

2. The basics
Let’s start off with some simple
reflections of the distinction
between participation,
engagement and involvement

3. When patients, carers and members of the public
are active partners in research, rather than the
‘subjects’ or participants of research.
It is about doing research with or by patients,
carers and the public, not doing research to
patients, carers and the public.

4. THINKING research AT EVERY OPPORTUNITY
• Where people are actively involved in
research projects and in research
organisations.Involvement
• Where information and
knowledge about research
is provided and
disseminated to people,
for example, a science fair
or hospital open day.
Engagement
• When people
take part in a
research study
(formally
referred to as
‘subjects’).
Participation

5. THINKING research AT EVERY OPPORTUNITY WITH YOUNG PEOPLE
Developing ideas
and prioritising
research
questions
Designing
research,
applying for
funding and
ethics
Conducting,
analysing and
disseminating
research
Providing and receiving training and development
opportunities – children, young people and their
families are an important part of your team

6. REMEMBER TO individualise OPPORTUNITIES
Diagnosis
Denial
Anger and
frustration
Adapting
Acceptance
Living
life to
the full
EVERY INDIVIDUAL IS ON A
DIFFERENT JOURNEY…

7. RESEARCH CAN empower CHILDREN, YOUNG PEOPLE
AND FAMILIES TO TAKE CONTROL
To learn about health conditions
To understand how to interpret evidence
To develop new skills and techniques
To find support from peers
To grow in confidence

8. IT’S MORE THAN JUST A nice THING TO DO
The quality and relevance of research can be
improved
Information can be made more appropriate and
accessible
Methods can be tailored so that they are acceptable
and sensitive to the needs of children, young people
and their families
Recruitment and retention to participate in
research can be increased
You can identify more relevant research questions
Children, young people and families can be
empowered

9. Children and
young people
living with
health
conditions and
their families
Patient
organisations
and charities
Health and
education
professionals,
researchers,
industry and
government
CLOSER COLLABOARATION BETWEEN ALL stakeholders IS NECESSARY
Ensuring
scientific and
technical
excellence
Ensuring relevance Accountability
Understanding of the real issues facing children, young
people and their families

10. Why and how should we
involve children, young
people and families in
research?

11. APPROACHES SHOULD BE bespoke
Existing groups
There are lots of existing young
person and parent/carer
advisory groups which you can
contact to support your work,
e.g. Young Dynamos,
GenerationR
Social media
Social media is an invaluable
tool for connecting with young
people and their families.
Advisory groups
Establishing new advisory
groups for specific projects or
initiatives is a good idea if you
want to establish a group you
can contact more frequently.
Ad-hoc focus
groups
Ad-hoc focus groups work well
for prioritising and designing
research for grant applications,
especially when budgets are
limited.
Consultancy
Meet with patient opinion
leaders and charitable
organisations to help them
advise and shape your work.
Co-researcher
partnerships
The gold standard is when
children, young people and
their families become co-
researchers: true research
partners with you.

12. THE TRECA project
The NIHR-funded TRECA study has
developed multimedia information
(MMI) resources with text,
animations, videos and diagrams to
inform children, young people and
families about research.
Place your screenshot here

13. THE SIRJIA project
Children, young people and families
were involved in identifying the primary
outcome measure for the study, as well
as the inclusion/exclusion criteria, and
methods of data collection.
OPPORTUNITY FOR
YOUNG PEOPLE WITH
ARTHRITIS!

14. COMMUNICATIONTAKES MANY DIFFERENT FORMS
PPIE
activities
Publicising
your
results
Telling
friends and
family what
you do
Lay summaries
(written and
visual)
Public
engagement
events e.g. open
day
Department
displays
Performing
arts

15. COMMUNICATING IN LAY LANUGAGE IS AN IMPORTANT SKILL
▹It’s not just a ‘nice thing to do’ anymore
▹It is an important transferable skill for
research and clinical practice
▹Being a good lay communicator is an art
▹Seize every opportunity to practice – a
good communicator is a better researcher
▸Talk to young person’s advisory groups
▸Take part in engagement events

16. Never use a long
word when a short
one will do!
Don’t use jargon for the sake of it!

17. PRACTICALITIES OF INVOLVING CHILDREN, YOUNG PEOPLE AND FAMILIES
FINANCIAL REWARDS
AND EXPENSES
RECOGNITION AND
APPRECIATION
LOGISTICS (DAY, TIME,
LENGTH OF MEETING)
CONSENT AND ASSENT
CREATIVE AND
PARTICIPATORY APPROACHES
SAFEGUARDING
AND ETHICS

18. KEY INGREDIENTS FOR including YOUNG PEOPLE IN RESEARCH
MAKE YOUNG
PEOPLE FEEL
valued
KEEP THE
MOMENTUM
going
LET YOUNG
PEOPLE
connect
WITH YOU
TALK with,
NOT AT
THINK ABOUT
THE simple
THINGS
Listen
AND act
KEEP
FEEDBACK
regular
ALWAYS BE
flexible
HAVE A
LITTLE
common
sense !

19. RESOURCES
▹INVOLVE: http://www.invo.org.uk/
▹GenerationR: http://generationr.org.uk/
▹Health Research Authority:
http://www.hra.nhs.uk/planning-and-improving-
research/best-practice/best-practice-in-public-
involvement/
▹NIHR Clinical Studies Groups:
http://www.nihr.ac.uk/nihr-in-your-
area/children/clinical-studys-group.htm

20. thanks!
ANY QUESTIONS?
Feel free to get in touch!
Ruth: Ruth.Nightingale@gosh.nhs.uk
Simon: hcsrst@leeds.ac.uk