Culturally-sensitive information-sharing in pediatric palliative care

Area of Science:

• Palliative Care
• Health Communication
• Cultural Competence in Healthcare

Background:

• Pediatric palliative care is essential for families facing a child's serious illness.
• Effective information sharing by healthcare providers is critical during a child's hospitalization and end-of-life care.
• Experiences of Mexican American and Chinese American families in this context require specific attention.

Purpose of the Study:

• To explore the perceptions of Mexican American and Chinese American parents regarding health care provider information-sharing during pediatric palliative care.
• To understand how information sharing impacts parents' experiences during and after their child's hospitalization and death.

Main Methods:

• Retrospective grounded theory analysis of 36 parents from 28 families.
• Participants were Mexican American and Chinese American parents whose child died within 6 months to 5 years prior.
• Recruitment occurred through two university hospitals in northern California.

Main Results:

• Parents identified three types of shared information: child's daily life, parents' daily life, and treatment/end-of-life issues.
• Four patterns of information sharing were observed, ranging from no information to comprehensive communication addressing parental concerns.
• Physicians were primary information sources, but nurses, social workers, and chaplains also played vital roles.

Conclusions:

• Language and cultural differences pose significant barriers to effective information sharing in pediatric palliative care.
• Suboptimal information-sharing patterns lead to lasting parental frustration, anger, and sadness.
• Improving communication strategies is vital to support families navigating pediatric palliative care.