Experiences of Inpatient Healthcare Services Among Children With Medical Complexity and Their Families: A Scoping Review

ABSTRACT

Background

Children with medical complexity (CMC) have high healthcare utilization and face unique challenges during hospital admissions. The evidence describing their experiences of inpatient care is distributed across disciplines. The aim of this scoping review was to map the evidence related to the inpatient experience of care for CMC and their families, particularly related to key aspects and methodological approaches, and identify gaps that warrant further study.

Methods

This scoping review was conducted in accordance with JBI methodology and included all studies that reported experiences of acute hospital care for CMC/families. All study designs were included. Databases searched included EMBASE, CINAHL Plus with Full Text, Web of Science, MEDLINE(R) and APA PsycInfo from 2000 to 2022. Details about the participants, concepts, study methods and key findings were abstracted using a data abstraction tool. A thematic analysis was conducted.

Results

Forty‐nine papers were included: 27 qualitative studies, 10 quantitative studies, six mixed methods studies, two descriptive studies and four reviews. Some quantitative studies used validated instruments to measure experience of care, but many used non‐validated surveys. There were a few interventional studies with a small sample size. Results of thematic analysis described the importance of negotiating care roles, shared decision‐making, common goal setting, relationship‐building, communication, sharing expertise and the hospital setting itself.

Conclusion

CMC and families value relational elements of care and partnering through sharing expertise, decision‐making and collaborative goal‐setting when admitted to hospital.

Patient or Public Contribution

This review was conducted in alignment with the principles of patient and family engagement. The review was conceptualized, co‐designed and conducted with the full engagement of the project's parent–partner. This team member was involved in all stages from constructing the review question, to developing the protocol, screening articles and drafting this manuscript.

Practitioner Points

Qualitative research describes key elements of inpatient experience of care for CMC and their families as relationships, communication, respect for parent/provider expertise and the hospital setting. There is less evidence on measuring experience of care using quantitative methodology, particularly using validating instruments. This would be helpful to support the evaluation of inpatient interventions to improve the experiences of CMC.