DEVELOPMENT AND VALIDATION OF A QUALITY OF CARE MEASURE FOR CHILDREN WITH SERIOUS ILLNESSES

Abstract

Each year, over 21 million children face serious illnesses with high mortality risks that impair quality of life and strain caregivers. Delivering high Quality of Care (QoC) is crucial in achieving optimal outcomes for these children and their families. This thesis advances QoC measurement for these children through six linked studies. Initially, a systematic scoping review identified gaps in parent-reported QoC measures. Subsequently, we developed 64 QoC items and a QoC framework based on parental views on key care processes relevant across care settings and illness trajectories. We then conducted a Delphi expert panel review for content validation of the draft items. Pre-testing with parents served to refine item clarity, followed by pilot-testing to generate preliminary data and improve administrative protocols. Lastly, we assessed the measurement properties of the measure. This valid and reliable measure of QoC for children with serious illnesses can facilitate service evaluation and development of targeted interventions aimed at enhancing QoC for this vulnerable population. The final chapter discusses major contributions and limitations of this thesis, along with four future research directions for QoC measurement that naturally extend from this work.