17 Understanding the ‘Overview Section’ of care plans for children with medical complexity

Abstract Background Children with medical complexity (CMC) are characterized by chronic complex conditions, technology dependence, and high healthcare utilization across home, hospital, and community. CMC followed by the Complex Care Program at The Hospital for Sick Children are given a Care Plan, which is a comprehensive, collaborative, written document to support and streamline the coordination of care. The overview section in the Care Plan is free text section where patients and families can incorporate holistic aspects of the child. Objectives The purpose of this study was to analyze the overview section of Care Plans of CMC to assess how they are currently used to understand the child holistically. Design/Methods A mixed methods study using a retrospective review of Care Plans of all patients enrolled in the Complex Care Program at The Hospital for Sick Children as of December 31, 2021. Study methodology included: (1) descriptive demographic data (age, sex, presence of a photo in the patient chart), (2) descriptive analysis of expressive writing (e.g., punctuation, CAPS LOCK, emojis) and wordcount of the overview section, (3) content analysis using interpretive description of the overview section of Care Plans whereby codes were generated to inform themes. Results A total of 325 patient charts of CMC were reviewed. The mean age of children included was 7.8-years-old (range: 9-months-old to 18 years-old) and the biological sex distribution was 43 percent female and 57 percent male. Fifty-eight percent of Care Plans had a photo. The average word count of the overview section was 70 (rang of 6 – 330). The descriptive analysis of the overview section captures the use of expressive writing (CAPS LOCK, exclamation, asterisk, vocalization/expression) to draw attention to a word or phrase or emphasize a point. Or content analysis revealed four central themes: (1) child as a whole, (2) caregiver as a whole, (3) living arrangement and family structure, and (4) child’s care needs. Conclusion Our findings suggest that the overview section of Care Plans has a broad purpose. While it is often used to provide holistic information about the child that goes beyond their medical needs, it is also used as a host for many other items pertaining to the child and their care. The overview section has potential to highlight non-medical aspects of the child and facilitate a greater understanding of the child to support patient centred care.