Parent and child perspectives on physician communication in pediatric palliative care

Abstract

ABSTRACTObjective:Despite growing recognition of the importance of communication with children with life-limiting illnesses and their families, there has been limited research that includes the child's perspective. The purpose of the current study was to identify the aspects of physician communication that children with life-limiting illnesses and their parents perceived to be facilitative or obstructive in pediatric palliative care.Methods:This qualitative study reports on the first 20 parent and child pairs of pediatric oncology and cardiology patients (mean age 14.25 years, range 9-21 years) with a poor prognosis (physician reported likely <20% chance of survival beyond 3 years) from two children's hospitals and one pediatric hospice in Los Angeles, California. Perspectives on physician communication were elicited from children's and parents' individual narratives, recorded, coded, and analyzed using qualitative grounded theory methodology.Results:Both children and parents identified five domains of physician communication deemed to be highly salient and influential in quality of care. These included relationship building, demonstration of effort and competence, information exchange, availability, and appropriate level of child and parent involvement. Parents identified coordination of care as another important communication domain. The characteristics of physicians that were deemed most harmful to satisfying communication included having a disrespectful or arrogant attitude, not establishing a relationship with the family, breaking bad news in an insensitive manner, withholding information from parents and losing their trust, and changing a treatment course without preparing the patient and family.Significance of results:The six positive communication domains are areas for clinicians to recognize and monitor in communicating with children and families in the pediatric palliative care setting. Knowledge of the qualities of communication that are satisfying to and valued by children and their parents have the potential to lead to more effective communication around the difficult decisions faced by physicians, parents, and children with life-threatening conditions.