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Articles

Perspectives and Experiences with Engaging Youth and Families in Research

, &
Pages 310-323 | Received 03 Nov 2017, Accepted 17 Jun 2018, Published online: 14 Sep 2018

References

  • Adams, A., Williamson, A., Sorkness, C., Hatfield, P., Eggen, A., & Esmond, S. (2017). The Steps Model: A practical tool for engaging communities to improve health outcomes. Academic Medicine, 92(6), 890.
  • Adelman, C. (1993). Kurt Lewin and the origins of action research. Educational Action Research, 1(1), 7–24.
  • Armstrong, L. L., & Manion, I. G. (2015). Meaningful youth engagement as a protective factor for youth suicidal ideation. Journal of Research on Adolescence, 25(1), 20–27.
  • Bartlett, D., Chiarello, L. A., Hjorngaard, T., & Sieck Taylor, B. (2017). Moving from parent “consultant” to parent “collaborator”: One pediatric research team’s experience. Disability and Rehabilitation, 39(21), 2228–2235.
  • Bowen, S., & Graham, I. D. (2013). Integrated knowledge translation. In E. Straus, J. Tetroe, & I. D. Graham (Eds.), Knowledge translation in healthcare: Moving from evidence to practice (2nd ed.). Chichester, UK: Wiley Blackwell/BMJ Books.
  • Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations, 17(5), 637–650.
  • Camden, C., Shikako-Thomas, K., Nguyen, T., Graham, E., Thomas, A., Sprung, J., … Russell, D. J. (2015). Engaging stakeholders in rehabilitation research: A scoping review of strategies used in partnerships and evaluation of impacts. Disability and Rehabilitation, 37(15), 1390–1400.
  • Canadian Institutes of Health Research (CIHR). (2017a). Strategy for patient-oriented research. Retrieved from http://cihr-irsc.gc.ca/e/41204.html
  • Canadian Institutes of Health Research (CIHR). (2017b). Patient engagement. Retrieved from http://www.cihr-irsc.gc.ca/e/45851.html
  • Canadian Institutes of Health Research (CIHR). (2017c). Glossary of funding-related terms. Retrieved from http://www.cihr-irsc.gc.ca/e/34190.html#c
  • Canadian Institutes of Health Research (CIHR). (2018). CIHR’s framework for citizen engagement—Appendices. Retrieved from http://www.cihr-irsc.gc.ca/e/41291.html#a1
  • Carman, K. L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C., & Sweeney, J. (2013). Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs, 32(2), 223–231.
  • Damschroder, L. J., Aron, D. C., Keith, R. E., Kirsh, S. R., Alexander, J. A., & Lowery, J. C. (2009). Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implementation Science, 4(1), 50.
  • Damschroder, L. J., & Lowery, J. C. (2013). Evaluation of a large-scale weight management program using the consolidated framework for implementation research (CFIR). Implementation Science, 8(1), 51.
  • de Wit, M., Kirwan, J. R., Tugwell, P., Beaton, D., Boers, M., Brooks, P., … Gossec, L. (2017). Successful stepwise development of patient research partnership: 14 years’ experience of actions and consequences in Outcome Measures in Rheumatology (OMERACT). The Patient: Patient-Centered Outcomes Research, 10(2), 141–152.
  • Dew, A., & Boydell, K. M. (2017). Knowledge translation: Bridging the disability research-to-practice gap. Research and Practice in Intellectual and Developmental Disabilities, 4(2), 142–157.
  • Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., … Murad, M. H. (2014). Patient engagement in research: A systematic review. BMC Health Services Research, 14(1), 89.
  • Drahota, A., Meza, R. D., Brikho, B., Naaf, M., Estabillo, J. A., Gomez, E. D., … Aarons, G. A. (2016). Community‐academic partnerships: A systematic review of the state of the literature and recommendations for future research. The Milbank Quarterly, 94(1), 163–214.
  • Esmail, L., Moore, E., & Rein, A. (2015). Evaluating patient and stakeholder engagement in research: Moving from theory to practice. Journal of Comparative Effectiveness Research, 4(2), 133–145.
  • Faden, R. R., Kass, N. E., Goodman, S. N., Pronovost, P., Tunis, S., & Beauchamp, T. L. (2013). An ethics framework for a learning health care system: A departure from traditional research ethics and clinical ethics. Hastings Center Report, 43(s1), S16.
  • Flicker, S. (2008). Who benefits from community-based participatory research? A case study of the Positive Youth Project. Health Education & Behavior, 35(1), 70–86.
  • Forsythe, L. P., Ellis, L. E., Edmundson, L., Sabharwal, R., Rein, A., Konopka, K., & Frank, L. (2016). Patient and stakeholder engagement in the PCORI pilot projects: Description and lessons learned. Journal of General Internal Medicine, 31(1), 13–21.
  • Forsythe, L. P., Szydlowski, V., Murad, M. H., Ip, S., Wang, Z., Elraiyah, T. A., … Hickam, D. H. (2014). A systematic review of approaches for engaging patients for research on rare diseases. Journal of General Internal Medicine, 29(S3), 788–800.
  • Frank, L., Basch, E., & Selby, J. V. (2014). The PCORI perspective on patient-centered outcomes research. JAMA, 312(15), 1513–1514.
  • Frank, L., Forsythe, L., Ellis, L., Schrandt, S., Sheridan, S., Gerson, J., … Daugherty, S. (2015). Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Quality of Life Research, 24(5), 1033–1041.
  • Gagliardi, A. R., Berta, W., Kothari, A., Boyko, J., & Urquhart, R. (2015). Integrated knowledge translation (IKT) in health care: A scoping review. Implementation Science, 11(1), 38.
  • Gallivan, J., Kovacs Burns, K., Bellows, M., & Eigenseher, C. (2012). The many faces of patient engagement. Journal of Participatory Medicine, 26(4), 32.
  • Gorter, J. W., Stewart, D., Cohen, E., Hlyva, O., Morrison, A., Galuppi, B., … Punthakee, Z. (2015). Are two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to adult healthcare: A mixed-methods longitudinal prospective cohort study. BMJ Open, 5(5), e007553. doi:10.1136/bmjopen-2014-007553.
  • Graham, I. D., & Logan, J. (2004). Innovations in knowledge transfer and continuity of care. The Canadian Journal of Nursing Research, 36(2), 89–2013.
  • Graham, I. D., Logan, J., Harrison, M. B., Straus, S. E., Tetroe, J., Caswell, W., & Robinson, N. (2006). Lost in knowledge translation: time for a map? The Journal of Continuing Education in the Health Professions, 26(1), 13–24.
  • Graham, I. D., Tetroe, J., & MacLean, R. (2014). Chapter 1. Some basics of integrated knowledge translation research. In I. D. Graham, J. Tetroe, & A. Pearson (Eds.), Practical guidance on how to do integrated knowledge translation (Book 21). Adelaide, SA: Lippincott-JBI.
  • Hamilton, C. B., Hoens, A. M., Backman, C. L., McKinnon, A. M., McQuitty, S., English, K., & Li, L. C. (2018). An empirically based conceptual framework for fostering meaningful patient engagement in research. Health Expectations, 21(1), 396–406.
  • Hamilton, C. B., Leese, J. C., Hoens, A. M., & Li, L. C. (2017). Framework for Advancing the Reporting of Patient Engagement in Rheumatology Research Projects. Current Rheumatology Reports, 19(7), 38.
  • Hayes, H., Buckland, S., & Tarpey, M. (2012). Briefing notes for researchers: Involving the public in NHS, public health, and social care research. Eastleigh, UK: INVOLVE.
  • Howe, A., MacDonald, H., Barrett, B., & Little, B. (2006). Ensuring public and patient participation in research: A case study in infrastructure development in one UK Research and Development consortium. Primary Health Care Research and Development, 7(1), 60–67.
  • Howe, A., Mathie, E., Munday, D., Cowe, M., Goodman, C., Keenan, J., …., Wilson, P. (2017). Learning to work together—Lessons from a reflective analysis of a research project on public involvement. Research Involvement and Engagement, 3(1), 1.
  • Jacquez, F., Vaughn, L. M., & Wagner, E. (2013). Youth as partners, participants or passive recipients: A review of children and adolescents in community-based participatory research (CBPR). American Journal of Community Psychology, 51(1–2), 176–189.
  • Jagosh, J., Macaulay, A. C., Pluye, P., Salsberg, J., Bush, P. L., Henderson, J., … Seifer, S. D. (2012). Uncovering the benefits of participatory research: Implications of a realist review for health research and practice. The Milbank Quarterly, 90(2), 311–346.
  • Johnson, D. S., Bush, M. T., Brandzel, S., & Wernli, K. J. (2016). The patient voice in research—Evolution of a role. Research Involvement and Engagement, 2(1), 6.
  • Jull, J., Giles, A., & Graham, I. D. (2017). Community-based participatory research and integrated knowledge translation: Advancing the co-creation of knowledge. Implementation Science, 12(1), 150.
  • King, G., & Chiarello, L. (2014). Family-centered care for children with cerebral palsy: Conceptual and practical considerations to advance care and practice. Journal of Child Neurology, 29(8), 1046–1054.
  • Kirwan, J. R., de Wit, M., Frank, L., Haywood, K. L., Salek, S., Brace-McDonnell, S., … Bartlett, S. J. (2017). Emerging guidelines for patient engagement in research. Value in Health, 20(3), 481–486.
  • Kohler, G., Sampalli, T., Ryer, A., Porter, J., Wood, L., Bedford, L., … Rivoire, E. (2017). Bringing value-based perspectives to care: Including patient and family members in decision-making processes. International Journal of Health Policy and Management, 6(11), 661–668.
  • Légaré, F., Stacey, D., Pouliot, S., Gauvin, F.-P., Desroches, S., Kryworuchko, J., … Graham, I. D. (2011). Interprofessionalism and shared decision-making in primary care: A stepwise approach towards a new model. Journal of Interprofessional Care, 25(1), 18–25.
  • Lewin, K. (1948). In: G.W. Lewin (Ed.). Resolving social conflicts. Selected papers on group dynamics. New York, NY: Harper & Row.
  • Macaulay, A. C. (2017). Participatory research: What is the history? Has the purpose changed? Family Practice, 34(3), 256–258.
  • Major, J., Stewart, D., Amaria, K., Nguyen, T., Giroux, C., Freeman, M., …., Gorter, J. W. (2014). Care in the Long term for youth and young adults with complex care needs. Ottawa, ON: Canadian Foundation for Healthcare Improvement.
  • McKibbon, K. A., Lokker, C., Wilczynski, N. L., Ciliska, D., Dobbins, M., Davis, D. A., … Straus, S. E. (2010). A cross-sectional study of the number and frequency of terms used to refer to knowledge translation in a body of health literature in 2006: A Tower of Babel? Implementation Science, 5(1), 16.
  • Moore, J. L., Shikako-Thomas, K., & Backus, D. (2017). Knowledge translation in rehabilitation: A shared vision. Pediatric Physical Therapy, 29, S64–S72.
  • Morain, S. R., Kass, N. E., & Grossmann, C. (2017). What allows a health care system to become a learning health care system: Results from interviews with health system leaders. Learning Health Systems, 1(1), e10015.
  • Morris, C., Shilling, V., McHugh, C., & Wyatt, K. (2011). Why it is crucial to involve families in all stages of childhood disability research. Developmental Medicine & Child Neurology, 53(8), 769–771.
  • Nguyen, T., Henderson, D., Stewart, D., Hlyva, O., Punthakee, Z., & Gorter, J. W. (2016). You never transition alone! Learning from the experiences of youth with chronic health conditions, parents and healthcare providers on self-management. Child: Care, Health, and Development, 42(4), 464–472. doi:10.1111/cch.12334.
  • Patient-Centered Outcomes Research Institute (PCORI) (2016). Financial compensation of patients, caregiver, and patient/caregiver organizations engaged in PCORI-funded research as engaged research partners. Retrieved from http://www.pcori.org/sites/default/files/PCORI-Compensation-Framework-for-Engaged-Research-Partners.pdf
  • Powers, J. L., & Tiffany, J. S. (2006). Engaging youth in participatory research and evaluation. Journal of Public Health Management and Practice, 12, S79–S87.
  • Ramsden, V. R., Rabbitskin, N., Westfall, J. M., Felzien, M., Braden, J., & Sand, J. (2017a). Is knowledge translation without patient or community engagement flawed? Family Practice, 34(3), 259–261.
  • Ramsden, V. R., Salsberg, J., Westfall, J. M., LeMaster, J., & Macaulay, A. C. (2017b). Patient- and community-oriented research: How is authentic engagement identified in grant applications? Canadian Family Physician, 63, 74–76.
  • Rosenbaum, P. (2011). Family-centred research: What does it mean and can we do it? Developmental Medicine and Child Neurology, 53(2), 99–100.
  • Rycroft-Malone, J., Burton, C. R., Bucknall, T., Graham, I. D., Hutchinson, A. M., & Stacey, D. (2016). Collaboration and co-production of knowledge in healthcare: Opportunities and challenges. International Journal of Health Policy and Management, 5(4), 221.
  • Rycroft-Malone, J., Harvey, G., Kitson, A., McCormack, B., Seers, K., & Titchen, A. (2002). Getting evidence into practice: Ingredients for change. Nursing Standard, 16(37), 38–43.
  • Selby, J. V., Forsythe, L., & Sox, H. C. (2015). Stakeholder-driven comparative effectiveness research: An update from PCORI. JAMA, 314(21), 2235–2236.
  • Sheridan, S., Schrandt, S., Forsythe, L., Hilliard, T. S., & Paez, K. A. (2017). The PCORI engagement rubric: Promising practices for partnering in research. The Annals of Family Medicine, 15(2), 165–170.
  • Shippee, N. D., Domecq Garces, J. P., Prutsky Lopez, G. J., Wang, Z., Elraiyah, T. A., Nabhan, M., … Murad, M. H. (2015). Patient and service user engagement in research: A systematic review and synthesized framework. Health Expectations, 18(5), 1151–1166.
  • Soever, L. J., Veinot, P. L., & Bell, M. J. (2014). Collaborative inter-relational healthcare research: A conceptual framework informed by a qualitative enquiry. Journal of Research in Interprofessional Practice and Education, 3(3).
  • Smith, M., Saunders, R., Stuckhardt, L., & McGinnis, J. M. (2013). Best care at a lower cost: The path to continuously learning health care in America. Washington, DC: Institute of Medicine.
  • Stack, E., & McDonald, K. E. (2014). Nothing about us without us: Does action research in Developmental disabilities research measure up? Journal of Policy and Practice in Intellectual Disabilities, 11(2), 83–91.
  • Suleiman, A. B., Soleimanpour, S., & London, J. (2006). Youth action for health through youth-led research. Journal of Community Practice, 14(1–2), 125–145.
  • Supple, D., Roberts, A., Hudson, V., Masefield, S., Fitch, N., Rahmen, M., … Wagers, S. (2015). From tokenism to meaningful engagement: Best practices in patient involvement in an EU project. Research Involvement and Engagement, 1(1), 5.
  • Vaughan, C. (2014). Participatory research with youth: Idealising safe social spaces or building transformative links in difficult environments? Journal of Health Psychology, 19(1), 184–192.
  • Venuta, R., & Graham, I. D. (2010). Involving citizens and patients in health research. The Journal of Ambulatory Care Management, 33(3), 215–222.
  • Wong, N. T., Zimmerman, M. A., & Parker, E. A. (2010). A typology of youth participation and empowerment for child and adolescent health promotion. American Journal of Community Psychology, 46(1–2), 100–114.
  • Woolf, S. H., Zimmerman, E., Haley, A., & Krist, A. H. (2016). Authentic engagement of patients and communities can transform research, practice, and policy. Health Affairs, 35(4), 590–594.

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