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‘Coffee & Cake’ – improving KT in childhood disability research through stakeholder engagement

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  1. ‘Coffee & Cake’ – improving KT in childhood disability research through stakeholder engagement Eve Hutton, eve.hutton@nhs.net

  2. “Involving users in the design and conduct of evaluation, as well as ethically preferable, has important practical advantages. Recruitment & retention are likely to be better if the intervention is valued by potential participants, concerns about fairness are addressed and, in the case of community based interventions, community leaders support the evaluation. Involving users may also contribute to better understanding of the process by which change is achieved” Developing & evaluating complex interventions MRC

  3. “ I often say to researchers ‘turn the pyramid upside down’. Often with research when you look at how the project has been mapped out – the last point is the person. And I have said turn it upside down. Start with the person – then it should evolve from there” ‘Turning the pyramid upside down’ INVOLVE 2012

  4. “Create space for dialogue and exchange where different partners feel comfortable voicing their opinions, leveling power relations” CIHR Guide to knowledge translation planning 2012

  5. Family faculty “The Peninsula Cerebra Research Unit is part of the Peninsula Collaboration for Leadership in Applied Health Research and Care (PenCLAHRC). PenCLAHRC is a collaboration of Universities and NHS organisations in the South West of England which aims to deliver high-quality health research that influences medical practice, ensuring that research addresses issues that are relevant to patients and carers and results in beneficial new treatments and services” http://www.pencru.org/aboutus/

  6. “As one of the parents stated in the discussion, it is important to ‘keep the kettle hot’ otherwise individuals lose interest and projects lose momentum” Hutton & Coxon (2009)

  7. The A-Z of postural care

  8. Social exchange Social exchange theory suggests that individual will weigh up the costs and benefits of engagement. The notion of reciprocation and fairness are important and individuals will participate out of a sense of mutual benefit …

  9. “It has been a very constructive process. It’s good to feel that you are being listened to and what you say is important. Often service users feel like they are the end of the chain – things happen to you. Giving some feedback into the system helps you feel you do have some control” “it was a really good example of doing things well. We delivered a good end-product that has been received well and in a timely manner. The whole thing from start to finish was a journey and learning curve for all, but it was focused – and a good job done…” Turning the pyramid upside down INVOVE 2010

  10. “I would recommend involving service users as fundamentally it can change the whole perception of the topic being researched. It ‘keeps it real’ and sustains a momentum and determination to provide a tangible outcome”

  11. MRC (2006) Developing & evaluating complex interventions: new guidance. www.mrc.ac.uk/complexinterventionsguidance Graham et al (2006) Lost in knowledge translation: Time for a map ? Journal of Continuing Education in the Health Professions Hutton E, Coxon K ( 2008) Involving parents as service users in an interprofessional research project. Journal of Interprofessional care. Hutton E, Coxon K ( 2011) Posture for learning: meeting the postural care needs of children with physical disabilities. Disability & Rehabilitation. INVOLVE (2010) Turning the pyramid upside down: examples of public involvement in social care research. Example 3 p18. A study of postural care for children with disability in mainstream schools. references

  12. Thanks This presentation presents independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0110-21045). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health