Experiences and information needs of parents seeking care for children with medical complexity in emergency care settings: a mixed methods systematic review
Hannah M. Brooks, Gwenllian Erdmann, Sarah Elliott, Lisa Hartling, Liz Dennett, Deborah Olmstead, Lisa Knisley, Samina Ali, Shannon D. ScottObjective:
The objective of this mixed methods systematic review was to synthesize primary research regarding parents’ self-reported experiences and information needs related to seeking emergency care for their child with medical complexity.
Introduction:
Children with medical complexity are frequent users of emergency department and other emergency care services. While some primary research describing family experiences of caring for children with medical complexity exists, no synthesis of available evidence on this topic is available. Findings from this review can provide a better overall understanding of the experiences and information needs of parents while in emergency care settings with a child with medical complexity in order to support families and guide expectations.
Eligibility criteria:
Primary studies of any design were included when reported in English, conducted with parents of a child < 18 years of age with medical complexity, and describing parents’ experiences or information needs when in emergency care settings.
Methods:
A search was conducted in the following electronic databases from inception to May 17, 2024: MEDLINE, Embase (Ovid), PsycINFO (Ovid), Scopus, and CINAHL Plus with Full Text (EBSCOhost). Screening and data extraction were completed by 2 reviewers independently. Eligible studies were critically appraised for methodological quality by 2 reviewers independently using the Mixed Methods Appraisal Tool. Data synthesis and integration of qualitative and quantitative data occurred simultaneously following the JBI convergent integrated approach.
Results:
Fifteen studies were included: 3 quantitative, 5 mixed methods, and 7 qualitative. The majority of studies were conducted in the United States (n=10, 67%) and used semi-structured interviews or focus group discussions to collect data (n=11, 73%). The most common pediatric diagnosis was sickle cell disease (n=6, 40%). Most included studies (n=12, 80%) met at least 80% of the Mixed Methods Appraisal Tool criteria. Synthesized findings were grouped into 6 integrated findings: i) patient and family experiences are impacted by the need to constantly advocate for their child; ii) parents perceived a lack of skills and knowledge among health care providers in caring for children with medical complexity; iii) parents experienced challenges when accessing emergency services and during transitions in care; iv) perceptions of the care received are influenced by quality of communication, timeliness of care, and pain management; v) collaboration and coordination in care are necessary; and vi) information supporting communication and decision-making can support positive experiences in emergency care settings.
Conclusions:
This mixed methods systematic review synthesized research to explore and gain a broader understanding of the experiences and information needs of parents when presenting to emergency care settings with a child with medical complexity. Findings highlight opportunities to improve patient and family experiences through improved communication, collaboration, care coordination, pain management, and informed decision-making. Findings can be used to inform the development of knowledge translation resources (eg, videos, infographics) for parents, and to contextualize educational tools or interventions for health care providers working in emergency care settings. Creating evidence-based resources for families and health care providers that consider parent perspectives has the potential to promote informed and shared decision-making while supporting patient-centered care.
Review registration:
PROSPERO CRD42024534701