Objectives: 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.
Methods: 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.
Results: 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.
Conclusions: 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.