Working with Families of Suddenly and Critically Ill Children: Physician Experiences.

D A Bartel
A J Engler
J E Natale
V Misra
A B Lewin
J G Joseph

Document Type Article

This work was completed while the authors were at Children's National Medical Center, Washington DC.


OBJECTIVE: To describe physicians' experiences in attempting to provide optimal care for families of children who suffer from sudden, acute life-threatening conditions (SALTC). DESIGN: To generate descriptive data in this exploratory study, we used qualitative methods including focus groups and in-depth interviews. Transcripts of focus groups and interviews were analyzed for content using standard phenomenologic analysis methods, which resulted in a participant-generated conceptual model of optimal care for families of children with SALTC. SETTING: The intensive care unit of an urban pediatric teaching hospital. PARTICIPANTS: Twenty-two pediatric intensive care unit physicians, including residents, fellows, and attendings. INTERVENTION: None. MAIN OUTCOME MEASURES: Each participating physician provided qualitative descriptions of experiences caring for families of children with SALTC. RESULTS: Physicians identified 4 components of optimal care for families: (1) providing timely, accurate information about their child; (2) maintaining privacy for confidential discussions and personal grieving; (3) giving adequate emotional support; and (4) granting family members the right to hold and comfort their dying child. Physicians also described barriers to, and facilitators of this optimal care. CONCLUSIONS: Descriptive information provided in this exploratory study offers a complex model of optimal family care. Issues that affect the quality of care to families include those related to the context of providing care in a large teaching hospital, as well as subtleties of communication between parents and staff. Physicians' beliefs about optimal care of families in the pediatric intensive care unit revealed implications for both practice and training in pediatrics.