Parental Decision-Making for Children With Medical Complexity: An Integrated Literature Review

Children with medical complexity (CMC) have multiple significant chronic health conditions that result in functional limitations and high health care utilization. The population of CMC is increasing and parent decision-making for this population is nuanced. To review the literature specifically related to the parent experience of medical decision-making for CMC from the parent perspective. A comprehensive, systematic approach was undertaken with the goal of identifying emergent themes in the existing literature as well as implications for clinical practice and future research. PubMed and PsycInfo databases were searched for English-language articles published between 1995-2020 that focused on parent experiences/perspectives using the search terms: children with medical complexity, children with serious illness, parent decision-making, parent experience, goals of care, parental priorities, advance care planning, and shared decision-making. The search yielded 300 unique manuscripts; including 32 empirical articles incorporated in this review. The synthesized findings were broken down into three main sections: 1. types of decisions that parents of CMC face, 2. key factors that influence parental decision-making for CMC, and 3. reasons that the decision-making process for parents of CMC is unique. The findings suggest that parents should be considered experts in their child's care and should be incorporated in shared decision-making in a culturally appropriate manner. CMC should have their personhood valued and providers require specialized training in communication. Parents of CMC have unique needs in their decision-making process and benefit from shared decision-making, continuity of care, collaborative communication and tailored, individualized care.