By Emma Vanderlee
Patients today should be more involved with their own health care; because if they are, they will find that they have better healthcare experiences and better health outcomes 2, 3. Because of these noted benefits, researchers have begun involving patients in their healthcare research. This is called patient-engagement health research. Patient-engagement promotes and supports patient, family, and public involvement in helping to improve and change the healthcare system and strengthens their influence on healthcare decisions1.
Patient and family engagement is also important when conducting research with children with neurodevelopmental disabilities, as there is a large unmet need for mental healthcare in children and adolescents with neurodevelopmental conditions. Parent-focused programs that are designed for typically developing children have shown mixed results for children with neurodevelopmental conditions6 and parents have reported significant challenges in accessing traditional health services due to barriers to care4,5.
As part of the CHILD-BRIGHT Network, researchers developing the Strongest Families Neurodevelopmental Program have engaged in an ongoing collaborative relationship with a Parent Advisory Committee. From brainstorming ideas for their “dream program” to helping to choose study questionnaires, 15 parents of children with neurodevelopmental disabilities have been sharing their unique perspectives and lived experience with the research team, all for the betterment of the program.
As part of the Strongest Families project, we will be conducting a study to help us better understand the experiences of parents and researchers working together. Looking beyond what simply worked well and what didn’t work well, we want to explore why parents participated, how they engaged, why they chose to be members of the Advisory Committee and why they did or did not continue. We will also interview researchers involved in the study to provide a fulsome view of the experiences from each perspective. We hope to provide in-depth information that can be transferable to other research studies that engage parents. This study may also demonstrate unique aspects of engaging with parents of children with neurodevelopmental disabilities who are navigating the management of their child’s complex needs. Patient-engagement is relatively new in research and we hope that our research will help others better understand how to appropriately engage parents so everyone involved has a positive experience.
- Coulter, A. (2012). Patient engagement—what works?. The Journal of ambulatory care management, 35(2), 80-89.
- Greene, J., & Hibbard, J. (2012). Why Does Patient Activation Matter? An Examination of the Relationships Between Patient Activation and Health-Related Outcomes. JGIM: Journal of General Internal Medicine, 27(5), 520-526. doi:10.1007/s11606-011-1931-2
- Greenfield, S., Kaplan, S., & Ware Jr., J. E. (1985). Expanding Patient Involvement in Care. Annals of Internal Medicine, 102(4), 520.
- Lingley-Pottie, P., McGrath, P. J., & Andreou, P. (2013). Barriers to mental health care: Perceived delivery system differences. Advances in Nursing Science, 36(1), 51-61. doi:10.1097/ANS.0b013e31828077eb
- Lingley-Pottie, P., & McGrath, P. J. (2007). Distance therapeutic alliance: The participant’s experience. Advances in Nursing Science, 30(4), 353-366. doi:10.1097/01.ANS.0000300184.94595.25
- Petrenko, C. (2013). A Review of Intervention Programs to Prevent and Treat Behavioral
Problems in Young Children with Developmental Disabilities. Journal of Developmental & Physical Disabilities, 25(6), 651-679. doi:10.1007/s10882-013-9336-2