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

objectiveTo assess parents of children requiring invasive mechanical ventilation's (IMV) perceptions of their children's developmental delays and disabilities.

methodsParents 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.

resultsThirty-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.

conclusionParents 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.