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Getting to grips with involving and engaging children, young people and families in research

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This presentation was delivered to the Leeds Children's Hospital Research Forum, where the practicalities of involving and engaging children, young people and families in research was discussed.

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Getting to grips with involving and engaging children, young people and families in research

  1. 1. GETTING TO GRIPS WITH involving AND engaging CHILDREN, YOUNG PEOPLE AND FAMILIES IN RESEARCH Ruth Nightingale and Simon Stones Thursday 23 August 2018 Leeds Children's Hospital PPI Research Forum
  2. 2. The basics Let’s start off with some simple reflections of the distinction between participation, engagement and involvement
  3. 3. When patients, carers and members of the public are active partners in research, rather than the ‘subjects’ or participants of research. It is about doing research with or by patients, carers and the public, not doing research to patients, carers and the public.
  4. 4. THINKING research AT EVERY OPPORTUNITY • Where people are actively involved in research projects and in research organisations.Involvement • Where information and knowledge about research is provided and disseminated to people, for example, a science fair or hospital open day. Engagement • When people take part in a research study (formally referred to as ‘subjects’). Participation
  5. 5. THINKING research AT EVERY OPPORTUNITY WITH YOUNG PEOPLE Developing ideas and prioritising research questions Designing research, applying for funding and ethics Conducting, analysing and disseminating research Providing and receiving training and development opportunities – children, young people and their families are an important part of your team
  6. 6. REMEMBER TO individualise OPPORTUNITIES Diagnosis Denial Anger and frustration Adapting Acceptance Living life to the full EVERY INDIVIDUAL IS ON A DIFFERENT JOURNEY…
  7. 7. RESEARCH CAN empower CHILDREN, YOUNG PEOPLE AND FAMILIES TO TAKE CONTROL To learn about health conditions To understand how to interpret evidence To develop new skills and techniques To find support from peers To grow in confidence
  8. 8. IT’S MORE THAN JUST A nice THING TO DO The quality and relevance of research can be improved Information can be made more appropriate and accessible Methods can be tailored so that they are acceptable and sensitive to the needs of children, young people and their families Recruitment and retention to participate in research can be increased You can identify more relevant research questions Children, young people and families can be empowered
  9. 9. Children and young people living with health conditions and their families Patient organisations and charities Health and education professionals, researchers, industry and government CLOSER COLLABOARATION BETWEEN ALL stakeholders IS NECESSARY Ensuring scientific and technical excellence Ensuring relevance Accountability Understanding of the real issues facing children, young people and their families
  10. 10. Why and how should we involve children, young people and families in research?
  11. 11. APPROACHES SHOULD BE bespoke Existing groups There are lots of existing young person and parent/carer advisory groups which you can contact to support your work, e.g. Young Dynamos, GenerationR Social media Social media is an invaluable tool for connecting with young people and their families. Advisory groups Establishing new advisory groups for specific projects or initiatives is a good idea if you want to establish a group you can contact more frequently. Ad-hoc focus groups Ad-hoc focus groups work well for prioritising and designing research for grant applications, especially when budgets are limited. Consultancy Meet with patient opinion leaders and charitable organisations to help them advise and shape your work. Co-researcher partnerships The gold standard is when children, young people and their families become co- researchers: true research partners with you.
  12. 12. THE TRECA project The NIHR-funded TRECA study has developed multimedia information (MMI) resources with text, animations, videos and diagrams to inform children, young people and families about research. Place your screenshot here
  13. 13. THE SIRJIA project Children, young people and families were involved in identifying the primary outcome measure for the study, as well as the inclusion/exclusion criteria, and methods of data collection. OPPORTUNITY FOR YOUNG PEOPLE WITH ARTHRITIS!
  14. 14. COMMUNICATIONTAKES MANY DIFFERENT FORMS PPIE activities Publicising your results Telling friends and family what you do Lay summaries (written and visual) Public engagement events e.g. open day Department displays Performing arts
  15. 15. COMMUNICATING IN LAY LANUGAGE IS AN IMPORTANT SKILL ▹It’s not just a ‘nice thing to do’ anymore ▹It is an important transferable skill for research and clinical practice ▹Being a good lay communicator is an art ▹Seize every opportunity to practice – a good communicator is a better researcher ▸Talk to young person’s advisory groups ▸Take part in engagement events
  16. 16. Never use a long word when a short one will do! Don’t use jargon for the sake of it!
  17. 17. PRACTICALITIES OF INVOLVING CHILDREN, YOUNG PEOPLE AND FAMILIES FINANCIAL REWARDS AND EXPENSES RECOGNITION AND APPRECIATION LOGISTICS (DAY, TIME, LENGTH OF MEETING) CONSENT AND ASSENT CREATIVE AND PARTICIPATORY APPROACHES SAFEGUARDING AND ETHICS
  18. 18. KEY INGREDIENTS FOR including YOUNG PEOPLE IN RESEARCH MAKE YOUNG PEOPLE FEEL valued KEEP THE MOMENTUM going LET YOUNG PEOPLE connect WITH YOU TALK with, NOT AT THINK ABOUT THE simple THINGS Listen AND act KEEP FEEDBACK regular ALWAYS BE flexible HAVE A LITTLE common sense !
  19. 19. RESOURCES ▹INVOLVE: http://www.invo.org.uk/ ▹GenerationR: http://generationr.org.uk/ ▹Health Research Authority: http://www.hra.nhs.uk/planning-and-improving- research/best-practice/best-practice-in-public- involvement/ ▹NIHR Clinical Studies Groups: http://www.nihr.ac.uk/nihr-in-your- area/children/clinical-studys-group.htm
  20. 20. thanks! ANY QUESTIONS? Feel free to get in touch! Ruth: Ruth.Nightingale@gosh.nhs.uk Simon: hcsrst@leeds.ac.uk

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