Even Resourceful Parents Lack Access to Ethics-Informed Resources

Area of Science:

• Medical Ethics
• Pediatric Healthcare
• Family Support

Background:

• Parents of children with medical complexity frequently encounter ethical dilemmas in care.
• Existing ethics resources may not be adequately utilized or accessible to these families.
• Navigating complex medical situations presents significant challenges for parents.

Purpose of the Study:

• To explore parents' experiences with ethics resources for children with chronic critical illness.
• To understand current patterns of ethics resource utilization among these parents.
• To identify barriers and facilitators to accessing ethics support.

Main Methods:

• Conducted 28 semi-structured individual interviews with parents of children with chronic critical illness.
• Gathered qualitative data on parents' encounters with ethics concerns and resource use.
• Analyzed interview transcripts to identify key themes and patterns.

Main Results:

• Parents universally reported facing ethics concerns related to their child's care.
• Ethics resources were perceived as helpful for information gathering, goal clarification, advocacy, and relationship improvement.
• Parents predominantly relied on informal, non-specialized resources and rarely recalled treatment team involvement with ethics resources (93% recall).
• A significant unmet need for accessible, ethics-specific resources was identified.

Conclusions:

• There is a critical need to develop and implement accessible, specialized ethics resources for parents of children with medical complexity.
• Enhancing the availability and integration of ethics support within treatment teams is crucial.
• Addressing the gap in ethics resource utilization can improve parental navigation of complex pediatric care.