This document summarizes an ethics training day on conducting research with children. It discusses: 1) The importance of involving children in research and obtaining their informed consent while protecting them from harm. 2) Practical challenges like ensuring diversity, working with gatekeepers, and obtaining consent from both children and their parents. 3) Examples of successfully involving "seldom heard" youth and using social media to engage young people in research projects.

1. UWE UREC TRAINING DAY - Ethical
issues in Research with Children
The ethics of involvement: involving
children and young people in
research
Louca-Mai Brady
Postgraduate Researcher, HAS

2. Background
• PhD: embedding CYP’s participation in
health services and research
• Background in applied social research,
including NCB Research Centre and
Disability Rights Commission
• Member of INVOLVE
• Freelance researcher, including work on
public involvement in research

3. Overview
• Wider context
• Practical examples:
- Public involvement (incl involving a
‘seldom heard’ group of YP)
- Using social media

5. 1. Protection from harm & ensuring
safeguarding /child protection
2. Making contact (working with ‘gatekeepers’)
3. Getting informed consent
4. Protecting confidentiality & anonymity
5. Minimising impact during the research/
evaluation and in how it is used
Minimising any detrimental impact
of the research process

6. How to ensure you get past the easiest to
reach & those most articulate (+possibly
selected by others) & ensure diversity &
inclusion...?
Making contact

7. • Gatekeepers give you permission to
contact & seek consent from the CYP (not
consent obo CYP)
• Layers of consent
• Identifing relevant gatekeepers
• Who has parental responsibility if CYP are
not living with their parents?
• Providing accessible information
Working with gatekeepers

8. • Accessible information
• Competence?
• Parental consent?
• Freely given without coercion,
sanctions, loss of benefits or
inducements.........
• Not just a once-off: ongoing
process in fieldwork
• Recorded as well as verbal
Informed consent

9. Involvement: theoretical perspectives
• Involving those on whom research is
focused can have a positive impact
on what is researched, how research is
conducted and the impact of research
findings (Staley, 2009)
• Shift from seeing CYP as objects of
enquiry towards a view of children as competent
social actors with ability and the right to active
participation (eg Grieg et al, 2007; Prout, 2002)
• Increasing acknowledgement of competence to do so
and the power of the ‘child voice’ in research (eg
Alderson, 2001; Powell & Smith, 2009)

10. INVOLVE definitions
• Involvement: Where members of the
public are actively involved in research
projects and in research organisations
• Participation: Where people take part in a
research study
• Engagement: Where information and
knowledge about research is provided and
disseminated
INVOLVE (2012). Briefing notes for researchers. www.invo.org.uk

11. • Consultation is the process by which
children and young people are asked their
opinions – on a specific issue or broader
agenda (eg as research participants)
• Involvement/participation is the process by
which individuals and groups of individuals
can influence decision-making and bring
about change (eg through involvement in the
planning and process of research)
*Participation Works

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

13. Involving a ‘seldom heard’ group
• The Y-SBNT project is funded by the
National Institute for Health Research
[HTA programme] (project number
11/60/01)
• Testing the feasibility of adapting an adult
intervention for young people
• 30 month study in which involvement of
young people in the research process is
central to whole project

14. Some emerging issues
• YP’s involvement has been extremely helpful
and has informed key elements of the
intervention
• Managing sensitive nature of topics discussed
• Relationship between researchers & YP
• Complex needs & range of services accessed
by this group of YP – e.g. mental health
problems
• This is a seldom heard 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

15. Using social media
• Social media = interaction among people
within virtual communities and networks,
e.g. blogs, Facebook, Twitter, LinkedIn,
Wikipedia and YouTube
• Use of social media and digital methods
as research tools is an emerging area, so
there is as yet limited ethical guidance

16. Using social media
• Using Twitter to engage policymakers,
practitioners and young people with an
interest in my research
• Project blog
• Blogs as a source of data
• Using Facebook to engage with YP
• Part of steering group for INVOLVE work
on using SM for involvement in research

17. Further information
• ESRC/NatCen: ‘New social media, new social science?’
www.methodspace.com/group/nsmnss
• Social Research Association (incl presentations from annual ‘social
media in social research’ conference: www.the-sra.org.uk
• Young Digital website: www.youngdigital.net
• ESOMAR (2011). ESOMAR guidelines on social media research.
http://www.esomar.org/uploads/public/knowledge-and-
standards/codes-and-guidelines/ESOMAR-Guideline-on-Social-
Media-Research.pdf
• Jones, C. (2011) Ethical issues in online research, British
Educational Research Association:
http://www.bera.ac.uk/researchers-resources/publications/ethical-
issues-in-online-research
• Smee, H. (2008). Web 2.0 as a social sciences research tool.
London: British Library.
www.bl.uk/reshelp/bldept/socsci/socint/web2/web2.pdf

18. Some ethical issues to consider
• Children’s rights to have a say in matters that affect
them vs safeguarding and assessments of
competence and vulnerability
• Inclusive research – who gets heard, and who
doesn’t?
• Gatekeepers, consent and assent
• Issues of power
• Responsive but responsible ethical processes in
relation to changing modes of communication (eg
social media)

19. Blog: www.younghealthparticipation.com
@louca_mai
Guidelines for research with CYP:
http://www.participationworks.org.uk/resourc
es/guidelines-for-research-with-children-and-
young-people