Anticipatory guidance for parents following paediatric intensive care: a scoping review and environmental scan of recovery-focused resources

Abstract

Objectives

To map and critically appraise anticipatory guidance interventions and resources for parents following PICU discharge, examine how they address recovery challenges, and identify gaps to inform parent-centred resource development.

Methods

Database search across EBSCO (MEDLINE, CINAHL, PsychINFO), Embase, Scopus, Web of Science, and Cochrane Library for studies published January 2000-June 2025. Environmental scan via targeted and Google searches. Five tools assessed delivery, understandability, actionability, quality, and readability.

Results

Of 1752 records, four studies and nine digital resources met inclusion criteria (n = 271 parents). Formats included phone calls, brochures, in-person conversations, plus websites, webpages, downloadable content, and videos, from university children’s hospitals (n = 10), and organisations (n = 3) across the US (n = 9), UK (n = 3), and Australia (n = 1). Three key findings emerged: (1) support for how parents’ access, understand, and use information was inconsistent; (2) resources prioritised functional (reading/comprehension), over interactive (communication, application) or critical health literacy (evaluation, advocacy); (3) system-level health literacy strategies were limited.

Conclusion

There is an urgent need to strengthen anticipatory guidance by embedding health literacy principles across design and delivery. This includes addressing organisational barriers to access and equity through co-design, plain language, and culturally responsive approaches. Beyond information provision, a deliberate focus on capability building can empower parents as active partners in care, ultimately improving outcomes for children and families.

Implications for clinical practice

Anticipatory guidance following PICU discharge must move beyond information provision toward capacity building that supports parents to apply, evaluate, and act on information. Embedding health literacy principles − plain language, readability testing, co-design, and cultural responsiveness − into resource development is critical to ensure accessibility and equity. Clinician education and integration into routine workflows are equally important to optimise resource impact. A universal precautions approach offers a practical strategy for health services to ensure all families, regardless of literacy level, receive clear, actionable, and supportive guidance.