People and Research West of England Research Forum

Involving children, young people and families in health & social care research

Louca-Mai Brady

17th April 2013

Providing opportunity to:

• Link with PRWE colleagues and share knowledge and experiences of involving CYPFs in health and social care research

• Discuss the practicalities of involving CYPFs in research

• Consider what next

Introductions

• Who you are

• What brings you here today?

• What are you hoping to get from the forum?

• Any key issues and questions?

My background

• PhD student at UWE

• Member of INVOLVE

• Freelance researcher, including work on PPI

• Background in applied social research, including leading on CYP’s involvement at NCB Research Centre

The context for children and young people’s involvement

The policy context• Health and Social Care Act 2012• New NHS structures and processes –

Healthwatch, CCGs, Public Health England• Children and Families Bill• Continued NIHR commitment to PPI• Campaigning work of organisations working with

CYPFs• 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.

Government’s 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 through the creation of a more autonomous system…with children young people and their families involved in decisions about their care and the design of services”.

DH (2013) Improving Children and Young People’s Health Outcomes:

a system wide response

Patient and public involvement in research• INVOLVE define ‘involvement’ in research as meaning that patients and the public are active partners in the research process rather than the ‘subjects’ of research

• An active partnership in which both researchers and those researched are involved in the research process

• 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)

• 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.

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)

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)

•But … how does all this fit with PPI?

PPI: levels of involvementConsultation

Collaboration

User-controlled

Ladder of participation

Office of the Children’s Commissioner

NCB 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

Benefits and challenges of involvement

Benefits: for research• Keeps research grounded in the lived experience of

CYPFs• Supports recruitment and can boost response rates• Helps to identify appropriate methodologies, or creative

and innovative ways of collecting data• Increases relevance of research tools• Enhances the data gathered • Brings an additional perspective to the interpretation of

research findings• Ensures findings are accessible to other CYPFs• Benefits communication of research findings to wider

audiences• Likely to lead to policy and practice that better reflect the

priorities and concerns of CYP and families

Benefits: for children, young people and families• Access their right to have a say in decisions that affect

them

• Make an active contribution to their communities and to improve services used by CYP

• Develop a variety of transferable skills

• Develop and extend their social skills and networks

• Access broader personal development

• Enhance their CV/ portfolio

• Gain acknowledgement of their contribution by receiving a payment, reward or other recognition

• Availability, age and accrual• Informed consent and the role of gatekeepers• Safeguarding and child protection vs rights to participate• Power issues• Balancing young people’s, families & researchers’ expectations• Issues of research quality and ethics• Professional understanding of what participatory research and

development involves (not just having a view) • Professional/adult attitudes to children and children’s ability to

participate – from researchers, research bodies and funders• Lack of a culture of participatory learning and change in many

public sector contexts • Who sets the agenda? • When is involvement in research not meaningful, possible or

appropriate?

Challenges

Challenging the myths – views of PEAR group members

• Research is too difficult for young people to understand

– give us training and support and think about how you can make information clear and accessible. Then we can understand a lot more!

• Young people don’t have the skills and knowledge that adult researchers have

- but adults can assume that they know what matters to young people, and what questions to ask them. We have expertise in being young people, and you may learn something from us!

• My boss/ the person funding the research will like it

– don’t do it just because you think it looks good! Be clear about the benefits for the research and us, and be really committed to involving us properly

Principles into practice

Planning involvement• What type or model of involvement would be appropriate for this study?

• And what stages of the research, and in what roles, could CYPFs be involved?

• Are there particular groups of CYPFs you could or should involve?

• Is involvement adequately resourced (costs, staff time etc) or is the involvement planned possible within available resources?

• Do you have sufficient involvement expertise within the team, or know where to access this?

• Is it possible to consult other CYPFs on your proposed plans?

An example of involving children and young

people…

: our voices, our health • A Wellcome-funded project by NCB Research Centre supporting 20 young people to contribute to UK public health research and policy

• 20 young people - met in school holidays

- activities included:• Working with public health researchers, policymakers

and research bodies (eg PHRC, NICE, INVOLVE)• Website (www.ncb.org.uk/PEAR)• Producing research summaries and

guidance • Speaking at events and conferences• Responding to consultations• Commissioning own research project• Organising a conference

Practical and ethical considerations

• Recruitment – comprehensive and accessible information on the study and the proposed role of CYP

• Access to CYP via gatekeepers• Consent – from CYP and parents (if under 16), informed and

ongoing• Anticipate availability of CYPF – both in timings of meetings

and expectations of input• Communication between meetings• Planning for further recruitment• Data protection• Safety – travel arrangements, medical treatment, risk

assessments and registers• Planning induction, training and support• Reward and recognition• Child protection and safeguarding – especially when CYP are

involved in data collection and analysis

Involving CYP at different stages of research

IMPLEMENTATION

IDENTIFYING & PRIORITISING

DEVELOPMENT OF THE GRANT

PROPOSAL

ANALYSING & INTERPRETING

DESIGNING

UNDERTAKING & MANAGING DISSEMINATION

MONITORING & EVALUATION

research cycle

INVOLVENovember 2004

Creative and inclusive methods• When considering who would be the most

appropriate CYP to involve in a study, also think about any implications for how you would involve them (eg age, background, access and support needs)

• As well as providing accessible, child-friendly materials, consider how you can use a variety of activities and creative methods to keep CYP engaged (eg writing, drawing, video) and ensure that these are accessible to all CYP in the group

• Make sessions as active as possible – keep Powerpoint to a minimum!

Evaluating involvement

• Currently very limited evidence base on the impact of PPI in research (Staley, 2009) and even less on the involvement of CYP

• Useful to evaluate in relation to learning for project/institution but also to contribute to wider evidence base

• CYPFs can contribute to this evaluation:- as participants (feedback forms, focus groups etc)- through involvement in the evaluation process

Checklist for involvement• Benefits to research and CYP

• Plan involvement from the start

• Recruitment

• Informed choice

• Consent from parents and young people

• Training and support

• Involve CYP in as many stages of research as possible

• Agree clearly defined roles

• Genuine opportunities for meaningful decision-making

• Reward and recognition

• Safe and ethical

• Enough time and money

• Evaluation and feedback

• Exit strategy – what happens after the project ends?