Culturally-Sensitive Information-Sharing in Pediatric Palliative Care

Abstract

This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their child's hospitalizations and at their child's death. The study used a retrospective design of grounded theory analysis. Participants included 36 parents (26 Mexican American and 10 Chinese American) from 28 families who experienced between 6 months and 5 years before study participation the death of a child who was aged </=20 years. Participants were recruited through 2 university hospitals in northern California. Parents' identified 3 types of information shared by health care providers: (1) information about the child's daily life in hospital; (2) information about the parents' daily life in hospital; and (3) information about treatment and end-of-life issues. Parents' narratives focused primarily on information shared by physicians; nurses, social workers, chaplains, interpreters, and other parents were also important sources of information. Four patterns of information-sharing emerged: (1) no information; (2) basic information; (3) basic information plus implications; and (4) basic information plus implications plus attention to parents' questions, concerns, and emotions. Positive and negative impacts of these patterns on parents are described. Language and cultural differences create barriers to information-sharing by health care providers to parents who are in need of pediatric palliative care. Less than optimal patterns of information-sharing contribute to frustration, anger, and sadness for parents long after their child's death.