The Views and Experiences of Families and Registered Nurses Regarding Hospital Care and Support of Children With Intellectual Disabilities: A Systematic Review.
Amirah Gadi, Lynne Marsh, Michael Brown
PMID 42618060WHAT IT FOUND
A review of 28 studies finds that hospital care for children with intellectual disabilities is consistently undermined by staff underestimating children's communication, excluding families from decisions, and ignoring sensory needs.
The gaps are systemic, not individual failures.
Key findings
01Families reported that staff routinely underestimated children's ability to understand and participate, communicating primarily through parents and marginalising the child's own voice, which weakened trust and relational connection.
02Families described persistent power imbalances and exclusion from decision-making, while RNs acknowledged parents' unique knowledge of their child but cited high workloads, time pressures, and inadequate preparation as barriers to consistent partnership.
03RNs commonly described feeling underprepared to care for children with intellectual disabilities, with gaps in formal education contributing to uncertainty and a reliance on families to guide care at the bedside.
STILL TO COME
How it was doneWhat they found
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What it does not show
The review protocol was not formally registered, limiting transparency about potential post-hoc modifications to the review process. Evidence is heavily weighted toward high-income Western countries, particularly the UK (14 studies) and Australia (5), limiting transferability to other healthcare systems and cultural contexts. The evidence base was heavily weighted toward inpatient hospital care, with limited representation of outpatient services, so it is unclear whether themes differ by setting. Substantial heterogeneity in study designs, participant groups, and outcome measures precluded meta-analysis; findings are a thematic synthesis, not a pooled effect. Several included studies had insufficient detail on data collection procedures, analytic transparency, and researcher reflexivity. The direct voice of children with intellectual disabilities was under-represented; their experiences were often mediated through parents or professionals. No eligible studies on nursing students or nurse educators were found, so the review could not address workforce preparation from those perspectives. Multiple publications arose from the same parent NIHR-funded study; while the authors attempted to avoid double-counting, the exact number of RNs was not clearly disaggregated in all phases.
Declared interests
The authors declare no conflicts of interest and report no funding.
The easy way to misread this
Do not read the themes about communication tools, sensory adaptations, or family partnership as evidence that these interventions improve clinical outcomes. The 28 included studies report families' and nurses' views and experiences, not treatment effects, and no quantitative pooling was possible. The review tells you what people report and value, not what has been shown to work.