Our journey, our stories: The lived experiences of parents/caregivers of children with severe neurodevelopmental disorders and behavioural complexity requiring examinations under anaesthesia
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View abstract on PubMed
Summary
This summary is machine-generated.Parents of children with neurodevelopmental disorders (NDD) face trauma accessing medical evaluations under anaesthesia (EUA). Improved care coordination and tailored support are crucial for equitable, patient-centered healthcare experiences.
Area Of Science
- Pediatric Healthcare
- Neurodevelopmental Disorders
- Patient Experience Research
Background
- Children with severe neurodevelopmental disorders (NDD) often exhibit behavioral complexity, hindering access to essential medical evaluations.
- Medical evaluations under anaesthesia (EUA) are sometimes necessary but can be challenging due to lack of coordination, leading to repeated, traumatic sedations.
Purpose Of The Study
- To explore the lived experiences of parents and caregivers of children with behavioral complexity undergoing EUA.
- To identify key themes and challenges faced by families navigating the healthcare system for these specialized evaluations.
Main Methods
- Semi-structured interviews were conducted with eleven families.
- Data analysis involved inductive thematic analysis, guided by patient-oriented research principles and a quality improvement framework.
Main Results
- Five key themes emerged: cumulative trauma, the need for awareness of behavioral complexity, the requirement for equitable and tailored care, the importance of communication, and the willingness of providers to coordinate care.
- An infographic was co-developed with a parent partner to visually represent these findings.
Conclusions
- Opportunities exist to enhance care coordination for EUAs in children with NDD and behavioral complexity.
- Developing patient-centered, trauma-informed processes and formalizing pathways are essential.
- Parental and caregiver insights are vital for future service development and improving healthcare delivery.
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