The Context of Collecting Family Health History: Examining Definitions of Family and Family Communication about Health among African American Women

Abstract

Public health initiatives encourage the public to discuss and record family health history information, which can inform prevention and screening for a variety of conditions. Most research on family health history discussion and collection, however, has predominantly involved White participants and has not considered lay definitions of family or family communication patterns about health. This qualitative study of 32 African American women—16 with a history of cancer—analyzed participants’ definitions of family, family communication about health, and collection of family health history information. Family was defined by biological relatedness, social ties, interactions, and proximity. Several participants noted using different definitions of family for different purposes (e.g., biomedical vs. social). Health discussions took place between and within generations and were influenced by structural relationships (e.g., sister) and characteristics of family members (e.g., trustworthiness). Participants described managing tensions between sharing health information and protecting privacy, especially related to generational differences in sharing information, fear of familial conflict or gossip, and denial (sometimes described as refusal to “own” or “claim” a disease). Few participants reported that anyone in their family kept formal family health history records. Results suggest family health history initiatives should address family tensions and communication patterns that affect discussion and collection of family health history information.

Acknowledgments

Erin Thimmesch and Maria Torres Galvan contributed to data collection and coding. The authors thank the Recruitment Enhancement Core in the Regulatory Support Center of the Institute of Clinical and Translational Sciences at Washington University in St. Louis (funded by National Institute of Health grants UL1 TR000448, KL2 TR000450, and TL1 TR000449) for assistance with recruitment.