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Background Descriptions of the COVID-19 pandemic’s indirect consequences on children are emerging. We aimed to describe the impacts of the pandemic on children with medical complexity (CMC) and their families. Methods A one-time survey of Canadian paediatricians using the Canadian Paediatric Surveillance Program (CPSP) was conducted in Spring 2021. Results A total of 784 paediatricians responded to the survey, with 70% (n = 540) providing care to CMC. Sixty-seven (12.4%) reported an adverse health outcome due to a COVID-19 pandemic-related disruption in healthcare delivery. Disruption of the supply of medication and equipment was reported by 11.9% of respondents (n = 64). Respondents reported an interruption in family caregiving (47.5%, n = 252) and homecare delivery (40.8%, n = 218). Almost 47% of respondents (n = 253) observed a benefit to CMC due to COVID-19 related changes in healthcare delivery, including increased availability of virtual care and reduction in respiratory illness. Some (14.4%) reported that CMC were excluded from in-person learning when their peers without medical complexity were not. Conclusion Canadian paediatricians reported that CMC experienced adverse health outcomes during the COVID-19 pandemic, including disruptions to family caregiving and community supports. They also describe benefits related to the pandemic including the expansion of virtual care. These results highlight the need for healthcare, community and education policymakers to collaborate with families to optimize their health.

Background: Children with medical complexity (CMC) have multiple chronic conditions in addition to highly complex care needs. The population of CMC has increased considerably in the recent decade and has among the highest health care utilization in pediatrics. CMC and their parental caregivers' experiences of care differ in important ways from other populations and CMC and their parental caregivers have reported poor experiences of care when compared to other pediatric populations. Importantly, CMC are at increased risk of adverse events during their hospitalizations. Objective: The objective of this review is to map the existing literature related to CMC and their parental caregivers’ experiences of receiving inpatient healthcare services, and to identify important knowledge gaps. Inclusion criteria: This review will include studies pertaining to the experiences of healthcare services for CMC, along with their parental caregivers, in the inpatient hospital setting. In our review, CMC are defined as children with (a) multiple chronic conditions, (b) high health care utilization, (c) high care needs in the home and community, and (c) functional limitations. Experiences of health care is described as interactions shaped by an organization's culture that influence patients' perceptions across the continuum of care. Unique settings, such as the NICU and mental health units, and populations, such as medically fragile infants, will be excluded. Methods: Using the Joanna Briggs Institute methodology, articles related to CMC and the inpatient care setting will be identified through EMBASE, CINAHL, Web of Science, MEDLINE and PsycInfo. Search period will be from the year 2000 to the current date. All types of research designs will be included but not grey literature. Studies will be limited to English. Screening of titles, abstracts and full-text articles will be conducted by two independent researchers. Disagreements will be resolved by discussion with a third researcher. Data will be extracted using a data extraction form including authors, country, participants, objectives, methodology, setting and key findings. Articles will be appraised with the Consolidated Criteria for Reporting Qualitative Studies (COREQ), Newcastle-Ottawa Scale (NOS) for cohort and case-control studies and the Consolidated Standards of Reporting Trials (CONSORT) for randomized controlled trials. Data tables and figures will be created to map and present data, and themes from data will be presented in a narrative summary. Significance: This review will aid in developing a comprehensive understanding of inpatient experiences of care for CMC and their parental caregivers. This understanding will contribute to further research on the development of models of care and potential interventional research projects among CMC and their parental caregivers in inpatient hospital settings. Collating and mapping this evidence is necessary to determine critical aspects of experiences of care that will help prioritize health services interventions and evaluation, as well as identify areas that require further investigation.

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