Interprofessional Collaboration in the Care of Children With Complex Care Needs: The Experiences of Children, Their Families, and the Intersectoral Care Team

Jillian Lamb, Dr. Shelley Doucet, Dr. Alison Luke


Introduction: Coordinated care has the potential to provide positive outcomes for children with complex care needs (CCN) and their caregivers. This population requires a multitude of services that are administered by various providers across sectors. Research has shown that care for this demographic can be improved through interprofessional care models and communication among providers. The primary objective of this study was to explore the barriers to collaboration among members of the care team. The second objective was to identify ways to improve coordination between caregivers and providers. Methods: This qualitative study focused on the perspectives of caregivers of children with CCN, health professionals, educators, and social care providers regarding their experiences with interprofessional collaboration in the care of children with CCN and their families in two Atlantic Canadian provinces (New Brunswick and Prince Edward Island). The study was conducted using semi-structured interviews of 32 family members and 88 stakeholders from the educational, health, and social sectors. Interview data were analyzed using thematic analysis (Braun & Clarke, 2006). Results: Participants included caregivers, health-care providers, educators, social workers, and therapists. All participants were involved in the care of children with CCN. Findings indicate that participants experience difficulties when accessing primary care and support services for children with CCN. These barriers were correlated with fragmented and uncoordinated care. Results were organized into three main themes: (a) Role Clarification, (b) Communication, and (c) Patient/Family-Centred Care. Each theme was explained through subthemes highlighting experiences of caregivers and care providers across sectors. Discussion: This study emphasized the need for increased research and evidence-based practices to address the current barriers to collaboration among care providers and caregivers when caring for children with CCN. By providing a patient-centred approach, there is opportunity to improve collaboration among providers and with caregivers while meeting the care needs of children with CCN.

Full Text:



Baird, J., Rehm, R. S., Hinds, P. S., Baggott, C., & Davies, B. (2016). Do you know my child? Continuity of nursing care in the pediatric intensive care unit. Nursing Research, 65(2), 142–150.

Baker, G. R., & Denis, J.-L. (2011, September). A comparative study of three transformative healthcare systems: Lessons for Canada. Canadian Health Services Research Foundation.

Barnert, E. S., Coller, R. J., Nelson, B. B., Thompson, L. R., Tran, J., Chan, V., Padilla, C., Klitzner, T. S., Szilagyi, M., & Chung, P. J. (2019). Key population outcomes for children with medical complexity: A systemic review. Maternal and Child Health Journal, 23(9), 1167–1176.

Boudreau, A. A., Goodman, E., Kurowski, D., Perrin, J. M., Cooley, W. C., & Kuhlthau, K. (2014). Care coordination and unmet specialty care among children with special health care needs. Pediatrics, 133(6), 1046–1053.

Brault, I., Kilpatrick, K., D’Amour, D., Contandriopoulos, D., Chouinard, V., Dubois, C.-A., Perroux, M, & Beaulieu, M.-D. (2014). Role clarification processes for better integration of nurse practitioners into primary healthcare teams: A multiple-case study. Nursing Research and Practice, 2014, Article 170514.

Braun,V., & Clarke,V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.

Brehaut, J. C., & Kohen, D. E. (2016). Complexity as a continuum of many health-related challenges. Developmental Medicine and Child Neurology, 58(11), 1099.

Brenner, M., Kidston, C., Hilliard, C., Coyne, I., Eustace-Cook, J., Doyle, C., Begley, T., & Barrett, M. J. (2018). Children’s complex care needs: A systematic concept analysis of multidisciplinary language. European Journal of Pediatrics, 177(11), 1641–1652.

Brenner, M., O’Shea, M., Larkin, P. J., Kamionka, S. L., Berry, J., Hiscock, H., Rigby, M., & Blair, M. (2017). Exploring integration of care for children living with complex care needs across the European Union and European economic area. International Journal of Integrated Care, 17(2), Article 1.

Canadian Interprofessional Health Collaborative (2010, February). A National Interprofessional Competency Framework.

Carter, B., Cummings, J., & Cooper, L. (2007). An exploration of best practice in multi-agency working and the experiences of families of children with complex health needs. What works well and what needs to be done to improve practice for the future? Journal of Clinical Nursing, 16(3), 527–539.

Charlton, P., Azar, R., Luke, A., Doucet, S., Montelpare, W., Nagel, D., Hyndman, N., & Thompson, K. (2017). Falling through the cracks: Barriers to accessing services for children with complex health conditions and their families in New Brunswick. Journal of New Brunswick Studies, 8, 133–158.

Cohen, E., Berry, J. G., Sanders, L., Schor, E. L., & Wise, P. H. (2018). Status complexicus? The emergence of pediatric complex care. Pediatrics, 141(S3), S202–S211.

Cohen, E., Dennis, Z. K., Agrawal, R., Berry, J. G., Bhagat, S. K. M., Simon, T. D., & Srivastava, R. (2011). Children with medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538.

D’Amour, D., Ferrada-Videla, M., San Martin Rodriguez, L., & Beaulieu, M.-D. (2005). The conceptual basis for interprofessional collaboration: Core concepts and theoretical frameworks. Journal of Interprofessional Care, 19(S1), 116–131.

Doucet, S., Nagel, D. A., Azar, R., Montelpare, W. J., Charlton, P., Hyndman, N., Luke, A., & Stoddard, R. (2017). A mixed-methods Quick Strike research protocol to learn about children with complex health conditions and their families. International Journal of Qualitative Methods, 16(1).

Looman, W. S., Park, Y. S., Gallagher, T. T., & Weinfurter, E. V. (2020). Outcomes research on children with medical complexity: A scoping review of gaps and opportunities. Child: Care, Health and Development, 46(1), 121–131.

McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., Perrin, J. M., Shonkoff, J. P., & Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102(1), 137–140.

Nelson, S., Turnbull, J., Bainbridge L., Caulfield, T., Hudon, G., Kendel, D., Mowat, D., Nasmith, L., Postl, B., Shamian, J., & Sketris, I. (2014). Optimizing scopes of practice: New models for a new health care system. Canadian Academy of Health Sciences.

Nuyen, B. A., Domogauer, J. D., Jennings, L., Kinzel, J., & Eliason, M. J. (2019). Interdisciplinary approach to care. In J. R. Lehman, K. Diaz, H. Ng, E. M. Petty, M. Thatikunta, & K. Eckstrand (Eds.), The equal curriculum: The student and educator guide to LGBTQ health (pp. 57–70). Springer.

Nzirawa, T. (2015). Caring for children with complex needs. Nursing Management, 22(5), 32–38.

Pluye, P., Bessière, G., Bigras, M., Boulet, A., Brenner, K., Crist, E., Duong, S., Goulet, S., Granikov, V., Jean-Marie, M., Kayal, D., Kremer, B., Loignon, C., Martello, C., McLauchlin, L. R., Nguyen, Q., Omon, E., Rosenberg, E., & Grad, R. (2014). Characteristics of complex care needs and interventions suited for patients with such needs: a participatory scoping review [Poster presentation]. North American Primary Care Research Group (NAPCRG) Annual Conference, New York, United States.

Samwell, B. (2012). From hospital to home: Journey of a child with complex care needs. Nursing Children and Young People, 24(9),14–19.

Shimmura, K., & Tadaka, E. (2018). Development of an interprofessional collaboration competency scale for children with medical complexity. BMJ Open, 8(6), Article e019415.

Statistics Canada (2008). Participation and activity limitation survey 2006: Families of children with disabilities in Canada.

Stewart, M. A. (2018). Stuck in the middle: the impact of collaborative interprofessional communication on patient expectations. Shoulder & Elbow, 10(1), 66–72.

UNICEF. (2013, May). The state of the world’s children 2013: Children with disabilities.

Vos, J. F. J., Boonstra, A., Kooistra, A., Seelen, M., & van Offenbeek, M. (2020). The influence of electronic health record use on collaboration among medical specialties. BMC Health Services Research, 20, Article 676.

Wani, D., & Malhotra, M. (2018). Does the meaningful use of electronic health records improve patient outcomes? Journal of Operations Management, 60(1), 1–18.

Ward, C., Glass, N., & Ford, R. (2015) Care in the home for seriously ill children with complex needs: A narrative literature review. Journal of Child Health Care, 19(4), 524–531.

World Health Organization. (2011, December 14). World report on disability.

Zwarenstein, M., & Reeves, S. (2006). Knowledge translation and interprofessional collaboration: Where the rubber of evidence-based care hits the road of teamwork. The Journal of Continuing Education in the Health Professions, 26(1), 46–54.



  • There are currently no refbacks.

Copyright (c) 2021 Healthy Populations Journal

Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.