Parent/caregiver needs during pediatric genome-wide sequencing: a scoping literature review
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Purpose
The integration of genome-wide sequencing (GWS), including whole-exome and whole-genome sequencing, has transformed pediatric diagnostics, yet the needs of parents and caregivers during this process remain insufficiently explored. This scoping review aims to synthesize current knowledge on parental and caregiver needs across the GWS process in pediatric settings to inform better clinical practices and support systems.
Methods
A scoping review was conducted following PRISMA guidelines. Electronic databases including PubMed, PsycINFO, CINAHL, Embase, and Web of Science were searched, yielding 574 studies, with 47 meeting the inclusion criteria. Data extraction focused on study characteristics, clinical settings, and identified parental needs categorized into pre-test, interim, and post-test periods. Conventional content analysis was used to inductively code and identify themes.
Results
Parental needs were categorized into two main themes: (1) Informational needs, encompassing tailored communication, understanding prognosis, logistics, and evolving information, and (2) Emotional support, emphasizing the importance of initial provider interactions and support from healthcare providers and peer groups. Informational and emotional needs were interrelated, impacting parents’ overall experiences. The review highlighted significant gaps during the interim waiting period, with needs largely focused on pre– and post-test periods.
Conclusion
Parents navigating the pediatric GWS process require comprehensive informational and emotional support. Effective communication before testing and empathetic follow-up contribute to positive experiences. Addressing gaps at different time throughout the process and fostering continuous provider and peer support can enhance the integration of GWS in pediatric care, improving family-centered outcomes.
