Participation and public involvement: planning an 'inclusive' PhD

Louca-Mai Brady

3rd May 2013

Starting the journey…

Where I want to get to:Embedding children and young people’s participation in health and social care service settings:- How is children and young people’s participation in health and social care service settings defined and operationalised?

- What does it mean to ‘embed’ children and young people’s participation within service settings?

- What needs to be in place for participation to be meaningful, effective and sustainable?

• What are the barriers and challenges to meaningful, effective and sustainable participation and how can these be addressed?

• How can children and young people’s participation in health and social care service settings be ‘embedded’ as a democratic and collaborative process of learning and change?

How I planned to get there

• Qualitative research in three case studies• Action research approach• Literature review• Initial inquiries• Critical reference group

The bigger picture

You are here

Navigating the landscape• Health and Social Care Act 2012• New NHS structures and processes – Healthwatch,

CCGs, NHS England, Public Health England & changes to public health & local authorities

• Children and Families Bill• Continued NIHR commitment to PPI• Campaigning work of organisations working with

CYPs• Children and young people’s participation and the

UNCRC

“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 the norm.”

NHS Future Forum Patient Involvement and Public Accountability Report (June 2011).

Recommendations from Children’s Health Outcomes Forum:• 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.

• The revised NHS Constitution is drafted in such a way as to be applicable to all children, young people and their families.

• The DH should bring together all relevant partners to co-produce a children’s health charter based on the principles of the UN Convention on the Rights of the Child, and aligned with the NHS Constitution.

• 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

Influences on acceptance of children and young people’s participation • Developing culture of involving CYP in decision-making processes

• children’s rights agenda and in particular the United Nations Convention on the Rights of the Child (UNCRC)

• growth of citizenship and public engagement as issues in policy and practice

• Participatory appraisal (used in development studies field)

• Article 12 . Every child and young person has the right to express his or her views freely in all matters affecting them

• 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 healthy

• Article 25. Children who are looked after by their local authorities, rather than their parents, have the right to have these living arrangements looked at regularly to see if they are the most appropriate. Their care and treatment should always be based on “the best interests of the child”

UN Convention on the Rights of the Child (UNCRC)

Theoretical perspectives• Involving those on whom research

focuses on can have a positive impact on what is researched, how research is conducted and the impact of research findings (Staley, 2009)

• Shift in sociological studies of childhood 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 their competence to do so and the power of the ‘child voice’ in research (eg Alderson, 2001; Powell & Smith, 2009)

Models

Ladder of participation

Office of the Children’s Commissioner

Model of children and young people’s involvement in research CYP have increasing control of the research process

CYP have

ownership of the research

CYP are

sources of research

data

CYP are actively involved in aspects of the planning and process of research

CYP are research

participants

CYP are

collaborators in the research

CYP are

consulted about the research

CYP’s participation

Engagement/ involvement

PPI

Action research

Bringing things together

Theory

• Patient and public involvement/engagement• Children’s rights and participation• Sociology of childhood• Action, inclusive & participative research

Policy

• Health and social care (DH)• Children and young people (DfE)

Practice

• Critical inquiries• Input from children and young people

Case studies

Theory

Policy

Practice

Where I am now

• Qualitative research in two case studies• Action research approach

• Critical inquiries• Critical reference group

• Literature review……….

The journey so far

• Trying to plan an ‘inclusive’ research PhD is hard!

• Models and maps can only take me so far• Being open to new ideas and collaborative

learning – but keeping endpoint in mind• Locating myself within the research• Co-production and ownership

One final model

AA

Thank you!