A concept analysis of children with complex health conditions: implications for research and practice
Rima Azar, Shelley Doucet, Amanda Rose Horsman, Patricia Charlton, Alison Luke, Daniel A. Nagel, Nicky Hyndman, William Montelpare
Abstract
BACKGROUND: This concept analysis aimed to clarify the meaning of "children with complex health conditions" and endorse a definition to inform future research, policy, and practice. METHODS: Using Walker and Avant's (2011)'s approach, we refined the search strategy with input from our team, including family representatives. We reviewed the published and grey literature. We also interviewed 84 health, social, and educational stakeholders involved in the care of children with complex health conditions about their use/understanding of the concept. RESULTS: We provided model, borderline, related, and contrary cases for clarification purposes. We identified defining attributes that nuance the concept: (1) conditions and needs' breadth; (2) uniqueness of each child/condition; (3) varying extent of severity over time; 4) developmental age; and (5) uniqueness of each family/context. Antecedents were chronic physical, mental, developmental, and/or behavioural condition(s). There were individual, family, and system consequences, including fragmented services. CONCLUSIONS: Building on previous definitions, we proposed an iteration that acknowledges the conditions' changing trajectories as involving one or more chronic condition(s), regardless of type(s), whose trajectories can change over time, requiring services across sectors/settings, oftentimes resulting in a lower quality of life. A strength of this paper is the integration of the stakeholders'/family's voices into the development of the definition.