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?
UWE postgrad research students presentation 030513
Participation and public involvement:planning an inclusive PhDLouca-Mai Brady3rd May 2013
Where I want to get to:Embedding children and youngpeople‟s participation in healthand social care service settings:- How is children and young people‟s participation in healthand social care service settings defined andoperationalised?- What does it mean to „embed‟ children and youngpeople‟s participation within service settings?- What needs to be in place for participation to bemeaningful, effective and sustainable?
• What are the barriers and challenges tomeaningful, effective and sustainableparticipation and how can these be addressed?• How can children and young people‟sparticipation in health and social care servicesettings be „embedded‟ as a democratic andcollaborative 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
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 withCYPs• Children and young people‟s participation and theUNCRC
“If the fundamental purpose of theGovernment‟s proposed changes tothe NHS – putting the patient first – isto be made a reality, the system thatemerges must be grounded insystematic patient involvement to theextent that shared decision making isthe norm.”NHS Future Forum PatientInvolvement and Public AccountabilityReport (June 2011).
Recommendations from Children‟sHealth Outcomes Forum:• All health organisations must demonstrate how theyhave listened to the voice of children and youngpeople, and how this will improve their healthoutcomes.• The revised NHS Constitution is drafted in such away as to be applicable to all children, young peopleand their families.• The DH should bring together all relevant partners toco-produce a children‟s health charter based on theprinciples of the UN Convention on the Rights of theChild, and aligned with the NHS Constitution.
• Consultation is the process by whichchildren and young people are asked theiropinions – on a specific issue or broaderagenda (eg as research participants)• Involvement/participation is the process bywhich individuals and groups of individualscan influence decision-making and bringabout change
Influences on acceptance of children andyoung people‟s participation•Developing culture of involving CYP indecision-making processes•children‟s rights agenda and in particularthe United Nations Convention on theRights of the Child (UNCRC)•growth of citizenship and publicengagement as issues in policy andpractice•Participatory appraisal (used indevelopment studies field)
• Article 12 . Every child and young person has the right toexpress his or her views freely in all matters affecting them• Article 13. Every child and young person has the right tofreedom of expression, including the right to all kinds ofinformation and ideas• Article 24. Children have the right to good quality health careand information to help them stay healthy• Article 25. Children who are looked after by their localauthorities, rather than their parents, have the right to havethese living arrangements looked at regularly to see if they arethe most appropriate. Their care and treatment should alwaysbe based on “the best interests of the child”UN Convention on the Rightsof the Child (UNCRC)
Theoretical perspectives• Involving those on whom researchfocuses on can have a positive impacton what is researched, how research isconducted and the impact of researchfindings (Staley, 2009)• Shift in sociological studies of childhoodfrom seeing CYP as objects of enquirytowards a view of children as competent social actorswith ability and the right to active participation (egGrieg et al, 2007; Prout, 2002)• Increasing acknowledgement of their competence todo so and the power of the „child voice‟ in research(eg Alderson, 2001; Powell & Smith, 2009)
Model of children and youngpeople‟s involvement in researchCYP have increasing control of the research processCYP haveownership ofthe researchCYP aresources ofresearchdataCYP are actively involved in aspects of theplanning and process of researchCYP areresearchparticipantsCYP arecollaborators inthe researchCYP areconsulted aboutthe research
Bringing things togetherTheory• Patient and public involvement/engagement• Children’s rights and participation• Sociology of childhood• Action, inclusive & participative researchPolicy• Health and social care (DH)• Children and young people (DfE)Practice• Critical inquiries• Input from children and young people
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 PhDis hard!• Models and maps can only take me so far• Being open to new ideas and collaborativelearning – but keeping endpoint in mind• Locating myself within the research• Co-production and ownership