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Parents' Experiences and Information Needs in the Management of Their Child With Intellectual Developmental Disorders

Gwenllian Erdmann1, Hannah M Brooks1, Lisa Hartling2

  • 1Translating Evidence in Child Health (ECHO) Research Program, Faculty of Nursing, University of Alberta, Edmonton, Canada.

Journal of Patient Experience
|February 2, 2026
PubMed

Insights

Parents of children with intellectual developmental disorders (IDDs) are key care coordinators in the emergency department (ED). Mutual respect, trust, and communication with healthcare providers (HCPs) facilitate positive ED experiences for children with IDDs.

Area of Science:

  • Pediatric Emergency Medicine
  • Healthcare Management
  • Disability Studies

Background:

  • Children with intellectual developmental disorders (IDDs) frequently utilize emergency department (ED) services.
  • Effective healthcare utilization for these children requires incorporating parental experiences and addressing information gaps.

Purpose of the Study:

  • To examine the experiences of parents managing a child with an IDD in the ED.
  • To identify the information needs of parents during emergency care for their children.

Main Methods:

  • Conducted semi-structured individual interviews with 10 parents of children with IDDs.
  • Analyzed interview data thematically to identify key themes and patterns.

Main Results:

  • Parents act as crucial care coordinators and health experts for their children, often advocating for their needs.
  • Positive ED experiences are facilitated by mutual respect and trust between parents and healthcare providers (HCPs), parental preparedness, and clear communication.
  • Parents utilize peer support and trusted information sources for decision-making and validation.

Conclusions:

  • Understanding parental experiences and needs is vital for improving ED care for children with IDDs.
  • Findings can inform the development of targeted knowledge translation strategies for caregivers and HCPs.
  • Strengthening the partnership between parents and HCPs can enhance emergency care for children with IDDs.

Keywords:
communicationemergency medicinepatient experiencepatient perspectives/narrativespediatrics

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