Work

Parents' Perceptions of Delays and Disabilities in Their Children Requiring Invasive Mechanical Ventilation

Year: 2026

Type: article

Abstract: OBJECTIVE: To assess parents of children requiring invasive mechanical ventilation's (IMV) perceptions of their children's developmental delays and disabilities. METHODS: Parents of children <3 years of age who required IMV after neonatal disease were interviewed as a consecutive series from a state-wide agency (n = 20) and a ventilator clinic (n = 15). Interview topics included parents': (1) perception of their child's current developmental functioning, (2) understanding of their child's disability risks, and (3) prior conversations with providers about developmental milestones and disability risks. Interviews were coded using a modified template approach and discussed to consensus. Main and sub-themes were determined iteratively with all investigators. RESULTS: Thirty-five parents were interviewed. Themes were categorized under two topics: (1) Parents' recall of conversations with providers; (2) Parents' perspectives on developmental delays. Topic 1 themes: (1) Despite wanting information on developmental outcomes, parents report unclear expectations for delay and disability based on limited conversations; (2) Parents reported a lack of access to neurodevelopmental expertise, most often directing questions to therapists or other parents. Topic 2 themes: (1) Parents can identify specific developmental milestones and delays; (2) Parents have an idea of overall disability, sometimes attributed to specific diagnoses or medical complexity; (3) Parents are hopeful for their child's future development. CONCLUSION: Parents of children requiring IMV value honesty about disability and recall few prior conversations. Most parents can identify developmental delays yet expect catch-up. Ultimately, improving communication between providers and parents about disability risk is critical to support children requiring IMV.

Source: Pediatric Pulmonology

DOI: 10.1002/ppul.71481

Authors: Amanda Calipo, Emma L. Green, Iris Huang, Sarah A. Sobotka

Institutions: University of Chicago, University of California, San Francisco

Language: English

Topic: Ethics and Legal Issues in Pediatric Healthcare

Subfield: Pediatrics, Perinatology and Child Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: hybrid

Estimated APC paid: $4,740