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Published on: January 29, 2014
Parents' Perceptions of Delays and Disabilities in Their Children Requiring Invasive Mechanical Ventilation
Amanda Calipo1, Emma L Green2, Iris Huang1,3
1The University of Chicago Pritzker School of Medicine, Chicago, Illinois, USA.
Insights
Parents of children needing invasive mechanical ventilation (IMV) want clear information on developmental outcomes. They can identify delays but often expect catch-up, highlighting a need for better provider communication about disability risks.
Area of Science:
- Pediatric critical care
- Neurodevelopmental disabilities
- Parental perceptions
Background:
- Children requiring invasive mechanical ventilation (IMV) face significant risks for developmental delays and disabilities.
- Understanding parental perspectives is crucial for providing comprehensive support.
Purpose of the Study:
- To assess parents' perceptions of their children's developmental delays and disabilities.
- To explore parents' understanding of disability risks and prior communication with healthcare providers.
Main Methods:
- Interviews were conducted with 35 parents of children under 3 years old who required IMV.
- Interview topics included perceived child development, understanding of disability risks, and prior provider conversations.
- Data were analyzed using a modified template approach with iterative theme determination.
Main Results:
- Parents desired more information on developmental outcomes but reported limited conversations with providers, leading to unclear expectations.
- Parents identified specific developmental milestones and delays but often expected children to "catch up."
- While aware of overall disability, parents frequently lacked direct access to neurodevelopmental expertise.
Conclusions:
- Parents value honest communication regarding their child's disability risks.
- There is a critical need to enhance communication between healthcare providers and parents about potential developmental challenges.
- Improved dialogue can better support children requiring IMV and their families.
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.
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01:20Assessment of Ventilation I: Respiratory Rate
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Critical Guidelines for Assessing Ventilation:
01:29Assessment of Ventilation II: Respiratory Depth and Rhythm
Respiratory depth measures the volume of air inhaled or exhaled during a breath. It can vary from shallow to deep and typically remains consistent when a person is at rest or asleep. Occasionally, individuals will automatically inhale deeply, known as sighing, which inflates the lungs with more air than normal breathing.
To assess respiratory depth, observe the degree of chest excursion or movement:
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