UWE postgrad research students presentation 030513
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This document outlines the plan and approach for a PhD that aims to embed children and young people's participation in health and social care service settings. The goals are to understand how participation is defined and operationalized, what it means to embed participation, and what is needed for participation to be meaningful, effective, and sustainable. The researcher plans to conduct qualitative research through action research and critical inquiries in case studies. Key influences discussed are children's rights, citizenship, and participatory approaches. Models of participation and involvement are presented. The researcher is navigating relevant policies and locating their work within theories of participation, children's rights, and action research to guide the inclusive PhD journey.
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UWE postgrad research students presentation 030513
- 1. Participation and public involvement: planning an 'inclusive' PhD Louca-Mai Brady 3rd May 2013
- 3. 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?
- 4. • 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?
- 5. How I planned to get there • Qualitative research in three case studies • Action research approach • Literature review • Initial inquiries • Critical reference group
- 6. The bigger picture You are here
- 7. 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
- 8. “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).
- 9. 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.
- 10. • 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
- 11. 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)
- 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. 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)
- 13. 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)
- 14. Models
- 17. 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
- 19. Action research
- 20. 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
- 22. Where I am now • Qualitative research in two case studies • Action research approach • Critical inquiries • Critical reference group • Literature review……….
- 23. 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
- 25. Thank you!
Editor's Notes
- Also – where I’m starting from
- One of the challenges of PhD research is locating yourself within the wider context, and even more so for me because I’m drawing on several disciplines and approachesBut also cloudscape because as well as being at the ‘blue skies’ stage of my research it’s also very hard navigate/get bearings
- Health and Social Care Act 2012: strengthens the collective voice of patientsEmphasis on the views and experiences of patients, carers and the public helping to improve the quality of health and social care services.C&F Bill “The Government has also paid particular attention to Article 12 – which gives children the right to express views on matters affecting them - and many of the provisions in the Bill take account of consultation with children and young people during their development
- McNeish and Newman (2002) suggest that the acceptance of children’s and young people’s participation and drive for increased participation has been influenced by a convergence of ideas
- Focus on children’s rights has, to some extent, been reflected in increasing interest in children and young people’s involvement in research
- Ref earlier PPI model of consultation, collaboration & user-controlled research
- • Inclusive research seen as encompassing all participative and action research approaches (see model below). It is an equal, collaborative partnership between stakeholders who have something (skills and/or experience) to contribute to the research and are enabled to do so in ways that work for them.Ref: also grounded theory
- Inclusive research seen as encompassing all participative and action research approaches (see model below). It is an equal, collaborative partnership between stakeholders who have something (skills and/or experience) to contribute to the research and are enabled to do so in ways that work for them.Is the idea of research leading to improved lives, as is often argued for inclusive research, also problematic? Is this the role of research? Does the inclusive research movement ask too much of researchers, making them feel guilt and like they are doing things wrong or not well enough?Is there a conflict between co-producing knowledge and the need for ownership for a thesis or report, and between accessible outputs and academic writing? Or can they co-exist? Interdependency – ideals (people being involved at all stages) vs reality (negotiated division of labour)
- If researchers have really entrenched positions and rigid definitions on inclusive/action research – how does this marry with ideas of collaboration, inclusion and co-production? IR was developed to move away from entrenched positions in emancipatory/participatory disability research, but is now also developing entrenched positions (ref: criticisms of presenters research by some people who said it was not sufficiently inclusive). Is there also an issue with trying to do inclusive research within an academy which is fundamentally undemocratic? Are there also hard limits about what is ‘good’ research and good/acceptable inclusive practice?