Children with complex health conditions: Let’s learn who they are and their needs to better serve them!

Doucet, S (NPI); Azar, R; Montelpare, W; Charlton, P; Hyndman, N; Luke, A; Stoddard, R; Nagel, D.

Background

Approximately 15 – 18% of children in North America have a chronic condition that impacts their health and causes limitations in their lives. These impacts and limitations place a burden on the families who care for these children, as well as affect the healthcare and education institutions that provide support for children with complex health conditions (CCHC). Yet there is no consensus in a common definition for CCHC, and little is known about CCHC and their families in a Canadian context.

Aim

The overall goal of this research project was to improve health care for CCHC and their families by generating knowledge that will inform practice, future research and policy development.

Objectives

(1) Develop an operational definition for CCHC; (2) explore the needs of CCHC and their families; (3) identify services and programs to address the needs of CCHC and their families; and, (4) develop and test a computerized algorithm to identify and classify CCHC.

Methods

A mixed-methods study design was used that comprised of three qualitative components and one quantitative component appropriate to each objective, such as: (1) a concept analysis; (2) participant interviews with CCHC, family members and various stakeholders; (3) an environmental scan; and, (4) adaptation, refinement and testing of a computerized algorithm on patient databases. Our findings have implications for patients, practice, and policy, which will be shared. The results from this project will also inform ongoing research around new and existing integrated and innovative service delivery models for CCHC and their families. For example, this research project provided the foundation for one new innovative service model of care, NaviCare/SoinsNavi.