A Qualitative Case Study Exploring the Experiences of Caregivers Using a Patient Navigation Centre for Children with Complex Care Needs

Autor/innen

  • Rosalinda Oi-Lin Knight Dalhousie University
  • Alison Luke University of New Brunswick
  • Shelley Doucet University of New Brunswick, Dalhousie Medicine New Brunswick

DOI:

https://doi.org/10.15273/hpj.v1i2.10653

Abstract

Introduction: Approximately 15% of children in North America live with a complex health condition. When caring for these children, it can be difficult and time-consuming to determine what services are available to meet their complex needs. Method: The aim of this research project was to explore the experiences of families using NaviCare/SoinsNavi, a patient navigation centre for children/youth with complex care needs and their families. Six families were assessed longitudinally over a six- to eight-month period. Semi-structured interviews were done at intake, three to five months, and six to eight months. Families also kept a monthly diary recording their experiences. Results: Families were satisfied with the services provided by NaviCare/SoinsNavi. They found it comforting to have someone that would take the time to listen to their concerns and was able to provide recommendations for services. Discussion: This longitudinal case study shows the benefit of navigation centres for children/youth with complex care needs and their families.

Autor/innen-Biografien

Rosalinda Oi-Lin Knight, Dalhousie University

BSc (Hons), MSc, MD

Department of Family Medicine

 

 

Alison Luke, University of New Brunswick

PhD 

Department of Nursing and Health Sciences

Shelley Doucet, University of New Brunswick, Dalhousie Medicine New Brunswick

RN, BN, MScN, PhD

Department of Nursing and Health Sciences

Literaturhinweise

American Academy of Pediatrics Council on Children with Disabilities. (2005). Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs. Pediatrics, 116(5), 1238–1244. https://doi.org/10.1542/peds.2005-2070

Bolger, N., Davis, A., & Rafaeli, E. (2003). Diary methods: Capturing life as it is lived. Annual Review of Psychology, 54, 579–616. https://doi.org/10.1146/annurev.psych.54.101601.145030

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://psycnet.apa.org/doi/10.1191/1478088706qp063oa

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. https://doi.org/10.1007/s00431-018-3216-9

Caicedo, C. (2014). Families with special needs children: Family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20(6), 398–407. https://doi.org/10.1177%2F1078390314561326

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 / Revue D‘études Sur Le Nouveau-Brunswick, 8, 133–158. https://journals.lib.unb.ca/index.php/JNBS/article/view/25883

Colver, A. F., Merrick, H., Deverill, M., Le Couteur, A., Parr, J., Pearce, M. S., Rapley, T., Vale, L., Watson, R., & McConachie, H. (2013). Study protocol: Longitudinal study of the transition of young people with complex health needs from child to adult health services. BMC Public Health, 13, Article 675. https://doi.org/10.1186/1471-2458-13-675

Doucet, S., Luke, A., Splane, J., & Azar, R. (2019). Patient navigation as an approach to improve the integration of care: The case of NaviCare/SoinsNavi. International Journal of Integrated Care, 19(4), Article 7. http://doi.org/10.5334/ijic.4648

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). https://doi.org/10.1177%2F1609406917731426

Ellenwood, A. E., & Jenkins, J. E. (2007). Unbalancing the effects of chronic illness: Non-traditional family therapy assessment and intervention approach. The American Journal of Family Therapy, 35(3), 265–277. https://doi.org/10.1080/01926180600968431

Fillion, L., Cook, S., Veillette, A. M., Aubin, M., de Serres, M., Rainville, F., Fitch, M., & Doll, R. (2012). Professional navigation framework: Elaboration and validation in a Canadian context. Oncology Nursing Forum, 39(1), E58–69. https://doi.org/10.1188/12.onf.e58-e69

Freeman, H. P., & Rodriguez, R. L. (2011). History and principles of patient navigation. Cancer, 117(S15), 3539–3542. https://doi.org/10.1002/cncr.26262

Gotlib Conn, L., Hammond Mobilio, M., Rotstein, O. D., & Blacker, S. (2016). Cancer patient experience with navigation service in an urban hospital setting: A qualitative study. European Journal of Cancer Care, 25(1), 132–140. https://doi.org/10.1111/ecc.12247

Kaufman, M., Pinzon, J., Canadian Paediatric Society, & Adolescent Health Committee. (2007). Transition to adult care for youth with special health care needs. Paediatrics & Child Health, 12(9), 785–788. https://doi.org/10.1093/pch/12.9.785

King, G., Williams, L., & Hahn Goldberg, S. (2017). Family-oriented services in pediatric rehabilitation: A scoping review and framework to promote parent and family wellness. Child: Care, Health and Development, 43(3), 334–347. https://doi.org/10.1111/cch.12435

Luke, A., Luck, K. E., & Doucet, S. (2020). Experiences of caregivers as clients of a patient navigation program for children and youth with complex care needs: A qualitative descriptive study. International Journal of Integrated Care, 20(4), Article 10. http://doi.org/10.5334/ijic.5451

McMullen, L. (2013). Oncology nurse navigators and the continuum of cancer care. Seminars in Oncology Nursing, 29(2), 105–117. https://doi.org/10.1016/j.soncn.2013.02.005

Paskett, E. D., Harrop, J. P., & Wells, K. J. (2011). Patient navigation: An update on the state of the science. CA: A Cancer Journal for Clinicians, 61(4), 237–249. https://doi.org/10.3322/caac.20111

Valaitis, R. K., Carter, N., Lam, A., Nicholl, J., Feather, J., & Cleghorn, L. (2017). Implementation and maintenance of patient navigation programs linking primary care with community-based health and social services: A scoping literature review. BMC Health Services Research, 17, Article 116. https://doi.org/10.1186/s12913-017-2046-1

Weinhold, I., & Gurtner, S. (2014). Understanding shortages of sufficient health care in rural areas. Health Policy (Amsterdam, Netherlands), 118(2), 201–214. https://doi.org/10.1016/j.healthpol.2014.07.018

Yin, R. K. (2014). Case study research: Design and methods (5th ed.). Sage Publication.

Downloads

Veröffentlicht

2021-11-17

Ausgabe

Rubrik

Articles