A Theory for Understanding Parental Workload and Capacity to Care for Children With Medical Complexity.

Abstract

Background and purpose: Children with medical complexity (CMC) experience poor health outcomes despite the high cost of care, and their parents face challenges in providing complex care. Poor health outcomes may be related to an imbalance between parental demands to manage care and their ability to meet the demands needed to provide complex care. However, this phenomenon has not been explored. In addition, much of the existing research focused on CMC lacks an overarching theoretical framework. The purpose of this article is to outline factors that impact families of CMC described in the literature. This article proposes a modified framework using theory derivation, which highlights the concepts of parental workload and capacity and demonstrates how they are related to CMC health.

Methods: A revised theoretical framework using theory derivation by Walker and Avant is presented using findings from the CMC literature that most affect the parents of these children.

Results: Applying content from two existing theories using concepts of relevance results in a framework that provides richer insight into the relationship between parental workload and parental capacity, particularly when parental workload outweighs parental capacity. This framework allows for the examination of how an imbalance between workload and capacity impacts CMC health outcomes.

Implications for practice: Although further study is needed to test the proposed theory, the framework can be used to examine these relationships with hopes of developing interventions to decrease parental workload and enhance parental ability.