UWE UREC TRAINING DAY - Ethical issues in Research with Children

The ethics of involvement: involving children and young people in researchLouca-Mai Brady

Postgraduate Researcher, HAS

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

Overview

• Wider context

• Practical examples:

- Public involvement (incl involving a ‘seldom heard’ group of YP)

- Using social media

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

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

Making contact

• 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

• 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

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)

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

• 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

• 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)

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

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

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

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

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

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)

Blog: www.younghealthparticipation.com

@louca_mai

Guidelines for research with CYP: http://www.participationworks.org.uk/resources/guidelines-for-research-with-children-and-young-people