“We Know What We Are Talking about”: Experiences of Young People with a Chronic Condition Involved in a Participatory Youth Panel and Their Perceived Impact

References

• Bailey, S., Boddy, K., Briscoe, S., & Morris, C. (2015). Involving disabled children and young people as partners in research: A systematic review. Child: Care, Health and Development, 41(4), 505–514. doi: 10.1111/cch.12197
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi: 10.1191/1478088706qp063oa
   Google Scholar
• Bruce, S. M., & Parker, A. T. (2012). Young deafblind adults in action: Becoming self-determined change agents through advocacy. American Annals of the Deaf, 157(1), 16–26. doi: 10.1353/aad.2012.1607
   PubMed Web of Science ®Google Scholar
• Canter, K. S., & Roberts, M. C. (2012). A systematic and quantitative review of interventions to facilitate school reentry for children with chronic health conditions. Journal of Pediatric Psychology, 37(10), 1065–1075. doi: 10.1093/jpepsy/jss071
   PubMed Web of Science ®Google Scholar
• Cherrill, J., Hudson, H., Cocking, C., Unsworth, V., Franck, L., Fakis, A., … Choonara, I. (2010). Clinical trials: The viewpoint of children with a chronic illness compared with healthy children. Archives of Disease in Childhood, 95(3), 229–232. doi: 10.1136/adc.2009.159145
   PubMed Web of Science ®Google Scholar
• Dedding, C. (2009). Delen in macht en onmacht (PhD diss.). Faculteit der Maatschappij- en Gedragswetenschappen. Universiteit van Amsterdam.
   Google Scholar
• Dixon, J., Ward, J., & Blower, S. (2019). “They sat and actually listened to what we think about the care system”: The use of participation, consultation, peer research and co-production to raise the voices of young people in and leaving care in England. Child Care in Practice, 25(1), 6–21. doi: 10.1080/13575279.2018.1521380
   Google Scholar
• Hart, R. A. (1992). Childrens participation: From tokenism to citizenship. Florence: UNICEF International Child Development Centre.
   Google Scholar
• Hill, M., Davis, J., Prout, A., & Tisdall, K. (2004). Moving the participation agenda forward. Children & Society, 18(2), 77–96. doi: 10.1002/chi.819
   Google Scholar
• Hwang, W., Weller, W., Ireys, H., & Anderson, G. (2001). Out-of-pocket medical spending for care of chronic conditions. Health Affairs, 20(6), 267–278. doi:10.1377/hltaff.20.6.267 doi: 10.1377/hlthaff.20.6.267
   PubMed Web of Science ®Google Scholar
• INVOLVE. (2013). Approaches to public involvement in research. Retrieved from https://www.invo.org.uk/posttyperesource/approaches-to-public-involvement/
   Google Scholar
• Ives, J., Damery, S., & Redwod, S. (2013). PPI, paradoxes and plato: Who’s sailing the ship? British Medical Journal, 39, 181–185. doi: 10.1136/medethics-2011-100150
   Google Scholar
• Lightfoot, J., & Sloper, P. (2003). Having a say in health: Involving young people with a chronic illness or physical disability in local health services development. Children & Society, 17(4), 277–290. doi: 10.1002/chi.748
   Google Scholar
• Lum, A., Wakefield, C. E., Donnan, B., Burns, M. A., Fardell, J. E., & Marshall, G. M. (2017). Understanding the school experiences of children and adolescents with serious chronic illness: A systematic meta-review. Child: Care, Health and Development, 43(5), 645–662. doi: 10.1111/cch.12475
   PubMed Web of Science ®Google Scholar
• Martin, G. P., & Finn, R. (2011). Patients as team members: Opportunities. Challenges and paradoxes of including patients in multi-professional healthcare teams. Sociology of Health and Illness, 33(7), 1050–1065. doi: 10.1111/j.1467-9566.2011.01356.x
   PubMed Web of Science ®Google Scholar
• Matthews, H. (2001). Citizenship, youth councils and young people’s participation. Journal of Youth Studies, 4(3), 299–318. doi: 10.1080/13676260120075464
   Google Scholar
• Murray, R. (2015). Yes they are listening but do they hear us? Reflections on the Journey of the Barnardo’s Participation Project. Child Care in Practice, 21(1), 78–90. doi: 10.1080/13575279.2014.973370
   Google Scholar
• Rosen-Reynoso, M., Kusminsky, M., Gragoudas, S., Putney, H., Crossman, M. K., Sinclair, J., & Yarde, J. (2010). Youth-based participatory research: Lessons learned from a transition research study. Pediatrics, 126(Suppl. 3), 177–182. doi: 10.1542/peds.2010-1466N
   Google Scholar
• Sattoe, J. N. T., Bal, M. I., Roelofs, P. D. D. M., Bal, R., Miedema, H. S., & Van Staa, A. (2015). Self-management interventions for young people with chronic conditions: A systematic overview. Patient Education and Counseling, 98(6), 704–715. doi: 10.1016/j.pec.2015.03.004
   PubMed Web of Science ®Google Scholar
• Sattoe, J. N. T., Hilberink, S. R., Van Staa, A., & Bal, R. (2014). Lagging behind or not? Four distinctive social participation patterns among young adults with chronic conditions. Journal of Adolescent Health, 54(4), 397–403. doi: 10.1016/j.jadohealth.2013.09.017
   PubMed Web of Science ®Google Scholar
• Schalkers, I., Parsons, C. S., Bunders, J. F., & Dedding, C. (2016). Health professionals’ perspectives on children’s and young people’s participation in health care: A qualitative multihospital study. Journal of Clinical Nursing, 25(7–8), 1035–1044. doi: 10.1111/jocn.13152
   PubMed Web of Science ®Google Scholar
• Sinclair, R. (2004). Participation in practice: Making it meaningful, effective and sustainable. Children & Society, 18, 106–118. doi: 10.1002/CHI.817
   Google Scholar
• Staley, K. (2013). There is no paradox with PPI in research. Journal of Medical Ethics, 39(3), 186–187. doi: 10.1136/medethics-2012-100512
   PubMed Web of Science ®Google Scholar
• Stam, H., Hartman, E. E., Deurloo, J. A., Groothoff, J., & Grootenhuis, M. A. (2006). Young adult patients with a history of pediatric disease: Impact on course of life and transition into adulthood. Journal of Adolescent Health, 39(1), 4–13. doi: 10.1016/j.jadohealth.2005.03.011
   PubMed Web of Science ®Google Scholar
• Taylor, R. M., Gibson, F., & Franck, L. S. (2008). The experience of living with a chronic illness during adolescence: A critical review of the literature. Journal of Clinical Nursing, 17(23), 3083–3091. doi: 10.1111/j.1365-2702.2008.02629.x
   PubMed Web of Science ®Google Scholar
• Thompson, J., Bissell, P., Cooper, C., Armitage, C. J., & Barber, R. (2012). Credibility and the ‘professionalized’ lay expert: Reflections on the dilemmas and opportunities of public involvement in health research. Health (London), 16(6), 602–618. doi: 10.1177/1363459312441008
   PubMed Web of Science ®Google Scholar
• Turtle, K., McElearney, A., & Scott, J. (2010). Involving children in the design and development of research instruments and data collection procedures: A case study in primary schools in Northern Ireland. Child Care in Practice, 16(1), 57–82. doi: 10.1080/13575270903378443
   Google Scholar
• Van de Bovenkamp, H. M. (2010). The limits of patient power: Examining active citizenship in Dutch health care (PhD diss.). Erasmus Universiteit Rotterdam.
   Google Scholar
• Van Staa, A., Jedeloo, S., Latour, J. M., & Trappenburg, M. J. (2010). Exciting but exhausting: Experiences with participatory research with chronically ill adolescents. Health Expectations, 13(1), 95–107. doi: 10.1111/j.1369-7625.2009.00574.x
   PubMed Web of Science ®Google Scholar
• Willis, C., Girdler, S., Thompson, M., Rosenberg, M., Reid, S., & Elliott, C. (2017). Elements contributing to meaningful participation for children and youth with disabilities: A scoping review. Disability and Rehabilitation, 39(17), 1771–1784. doi: 10.1080/09638288.2016.1207716
   PubMed Web of Science ®Google Scholar
• Zwaanswijk, M., & Van Dulmen, S. (2014). Advantages of asynchronous online focus groups and face-to-face focus groups as perceived by child, adolescent and adult participants: A survey study. BMC Research Notes, 7(1), 756. doi: 10.1186/1756-0500-7-756
   PubMedGoogle Scholar