RESEARCH REFLECTION Research in pediatric oncology: Engaging parents to strengthen research processes, outcomes and knowledge translation

Jill M. G. Bally, Solomon K. Mcharo

Abstract


Childhood cancer is the most common disease-related cause of death in Canadian children aged 0-14 years, with more than 1,000 new diagnoses every year (Canadian Cancer Statistics Advisory Committee, 2019). Treatment for childhood cancers requires complex, intensive, and lengthy regimens, often lasting years. Each new diagnosis marks tremendous upheaval in the lives of the child and their family, and an opportunity for nurses in pediatric oncology to make a difference. However, to best intervene, it is crucial to understand the experiences and needs of parental caregivers who have children in treatment for cancer. Patient Oriented Research is one way to bring together patients, family members, researchers, healthcare providers, and decision-makers to actively collaborate, understand best practices, and create transformational positive change in pediatric oncology.


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References


Amirav, I., Vandall-Walker, V., Rasiah, J., & Saunders, L. (2017). Patient and researcher engagement in health research: A parent’s perspective. Pediatrics, 140(3), e20164127. https:// doi. org/10. 1542/ peds. 2016- 4127

Baumgardner, D. J. (2019). Defining Patient-Oriented Research for average person (and potential research partner). Journal of Patient-Centered Research and Reviews, 6(1), 4–6. doi:10.17294/2330-0698.1697

Bishop, A., Elliot, M. J., & Cassidy, C. (2018). Moving patient-oriented research forward: thoughts from the next generation of knowledge translation researchers. Research Involvement and Engagement, 4(1), 23. https://doi.org/10.1186/s40900-018-0110-6

Canadian Cancer Statistics Advisory Committee. (2019). Canadian Cancer Statistics 2019. Canadian Cancer Society. cancer.ca/Canadian-Cancer-Statistics-2019-EN

Canadian Institute of Health Research (CIHR). (2019, 05 27). Strategy for Patient-Oriented Research-Patient Engagement Framework. https://cihr-irsc.gc.ca/e/48413.html

Canadian Institute of Health Research (CIHR). (2011). Canada’s Strategy for Patient-Oriented Research. Improving health outcomes through evidence-informed care. https://cihr-irsc.gc.ca/e/documents/P-O_Research_Strategy-eng.pdf

Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Shippee, N., Brito, J. P., Boehmer, K., Hasan, R., Firwana, B., Erwin, P., Eton, D., Sloan, J., Montori, V., Asi, N., Abu Dabrh, A. M., Murad, M. H. (2014). Patient engagement in research: A systematic review. BMC Health Services Research, 14, 89. http://www.biomedcentral.com/1472-6963/14/89

Edwards, V., Wyatt, K., Logan, S., & Britten, N. (2011). Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy. Health Expectations, 14(4), 429–438.

Fayed, N., Gardecki, M., & Cohen, E. (2018). Partnering with families of children with medical complexities to evaluate interventions. CMAJ, 190((Suppl 1)), S24–S25. https:// doi. org/ 10.1503/cmaj.180372

Jagosh, J., Macaulay, A. C., Pluye, P., Salsberg, J., Bush, P. L., Henderson, J., Sirett, E., Wong, G., Cargo, M., Herbert, C. P. Seifer, S. D., Green, L. W., Greenhalgh, T. (2012). Uncovering the benefits of participatory research: Implications of a realist review for health research and practice. The Milbank Quarterly, 90(2), 311–346. https://www.jstor.org/stable/23266513

Kim, T. H., Tavares, E., & Birken, C. S. (2018). Engaging parents to research childhood interventions aimed at preventing common health problems. CMAJ, 190((Suppl 1)), S22–S23. https:// doi. org/10.1503/cmaj.180323

Mallidou, A. A., Frisch, N., Doyle-Waters, M. M., MacLeod, M. L., Ward, J., & Atherton, P. (2018). Patient-Oriented Research Competencies in Health (PORCH) for patients, healthcare providers, decision-makers and researchers: protocol of a scoping review. Systematic Reviews, 7(1), 101. https://doi.org/10.1186/s13643-018-0762-1

Ramsden, V. R., Salsberg, J., Herbert, C. P., Westfall, J. M., LeMaster, J., & Macaulay, A. C. (2017). Patient- and community-oriented research: How is authentic engagement identified in grant applications? Canadian Family Physician, 63(1), 74–76. https://www.cfp.ca/content/63/1/74

Shen, S., Doyle-Thomas, K. A., Beesley, L., Karmali, A., Williams, L., Tanel, N., & McPherson, A. C. (2016). How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expectations, 20, 543–554. https:// doi. org/10.1111/hex.12490


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