11 Experiences of Inpatient Healthcare Services among Children with Medical Complexity: A Scoping Review

Abstract Background Children with medical complexity (CMC) have among the highest need for inpatient services in paediatrics. In addition to effectiveness and safety, experience of care (EoC) is a crucial pillar of health care quality, encompassing all interactions that shape a patient/family’s perception of care. Current evidence suggests that CMC have lower EoC compared to other populations. Collating the existing cross-disciplinary evidence will identify critical aspects of their EoC, both positive and negative, that could inform the development and evaluation of health services interventions for CMC in the hospital setting. Objectives The objectives of this scoping review were to map the existing literature related to the experience of inpatient health services for CMC and their families, describe research methods, and categorize key concepts of EoC while simultaneously identifying knowledge gaps. Design/Methods The Joanna Briggs Institute (JBI) methodology for scoping reviews was used. Articles related to CMC and the inpatient setting were identified through EMBASE, CINAHL, Web of Science, MEDLINE and PsychoInfo. Reference lists were also searched for relevant articles. Screening of titles, abstracts, and full-text articles was conducted by two independent researchers, resolving discrepancies by discussion and consensus. Data extraction and critical appraisal for included papers were likewise conducted by two separate researchers. Abstracted data included authors, participants, objectives, methodology, and key findings. Critical appraisal was conducted using the Mixed Methods Appraisal Tool and the JBI critical appraisal tool for systemic reviews. Results A total of 4463 separate articles underwent title/abstract review and 513 went on to full text review. After applying inclusion and exclusion criteria, a total of 48 articles was included in the review. There were 26 qualitative studies, 8 quantitative studies, 7 mixed methods studies, and 7 review papers. Quantitative studies used a variety of instruments to measure EoC, with the most common being the Measures of Processes of Care. The primary concepts related to EoC to be identified include partnerships (including continuity, building a therapeutic alliance), communication (particularly parent-nurse), decision-making and goal setting, and psychological distress and symptoms that occur during a hospitalization. Conclusion This review synthesizes the existing evidence on inpatient EoC for CMC. Although a diverse set of elements related to EoC are described, there are few interventional studies that include these as outcome measures. These EoC elements could be mapped to existing instruments or form the basis for the development of new tools that would allow the incorporation of EoC into evaluation of inpatient interventions.