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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

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Published on: June 6, 2020

Pediatric advance directives: parents' knowledge, experience, and preferences.

Danica B Liberman¹, Phung K Pham², Alan L Nager³

¹Division of Emergency and Transport Medicine, Children's Hospital Los Angeles, Los Angeles, California; andDepartment of Pediatrics, Keck School of Medicine of the University of Southern California, Los Angeles, California dliberman@chla.usc.edu.

|July 9, 2014

Summary

Parents of chronically ill children have limited knowledge of advance directives (ADs). Many families are interested in creating ADs, indicating a need for better communication about end-of-life care.

Keywords:

advance care planning decision-making end of life palliative care special-needs children

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Area of Science:

Pediatric healthcare
Bioethics
Family medicine

Background:

Advance directives (ADs) are crucial for pediatric chronic illness care.
Understanding family perspectives on ADs is essential for effective end-of-life planning.
Limited data exists on parents' and caregivers' experiences with ADs for children.

Purpose of the Study:

To assess parents' and caregivers' experience and knowledge of advance directives (ADs) for children with chronic illnesses.
To explore family preferences for discussing ADs and end-of-life care.
To identify factors influencing AD awareness and utilization in pediatric chronic care.

Main Methods:

A prospective, cross-sectional survey was administered to 307 parents and caregivers of children with chronic illnesses.
Data collected included prior AD experience, knowledge, preferences for future discussions, child's health status, and demographics.
Statistical analysis examined associations between demographics, health status, and AD awareness/preferences.

Main Results:

Only 17.6% of participants had discussed an AD, and 2.6% reported their child had one.
AD knowledge was higher among college-educated and English-speaking participants.
Nearly 50% of families expressed interest in creating an AD for their child, particularly those with frequent emergency visits.

Conclusions:

There is a significant gap in AD experience and knowledge among families of chronically ill children.
A substantial unmet need exists for AD discussions and planning in pediatric chronic care.
Enhanced communication between medical teams and families is vital to address ADs and end-of-life care preferences.