Your Family Connects: A Theory-Based Intervention to Encourage Communication about Possible Inherited Cancer Risk among Ovarian Cancer Survivors and Close Relatives

• Type of Material: Article
• Authors: Jingsong Zhao, Emory University; Colleen M. McBride, Emory University; Gavin Campbell, Emory University; Rebecca D. Pentz, Emory University; Ngoc Cam Escoffery, Emory University; Michael Komonos, Emory University; Cecelia Bellcross, Emory University; Kevin C. Ward, Emory University; James R. Shepperd, University of Florida; Yue Guan, Emory University
• Language: English
• Date: 2023-07-24
• Publisher: Karger Publishers
• Publication Version: Final Published Version
• Copyright Statement: © 2023 The Author(s).Published by S. Karger AG, Basel
• License: Creative Commons Attribution-NonCommercial 4.0 International
• Final Published Version (URL): https://doi.org/10.1159/000531772
• Title of Journal or Parent Work: Public Health Genomics
• Volume: 26
• Issue: 1
• Start Page: 77
• End Page: 89
• Grant/Funding Information: The collection of cancer incidence data in Georgia was supported by contract HHSN261201800003I, Task Order HHSN26100001 from the NCI, and cooperative agreement 6NU58DP006352-05-01 from the CDC.; The research was funded by a grant from the National Cancer Institute of the National Institutes of Health (5U01CA240581-02) and the Winship Cancer Institute, P30CA138292.
• Keywords: Cancer risk; Genetic testing; Intervention; Family communication
• Research Categories: Health Sciences, Oncology; Health Sciences, Public Health

Abstract

Introduction Encouraging family communication about possible genetic risk has become among the most important avenues for achieving the full potential of genomic discovery for primary and secondary prevention. Yet, effective family-wide risk communication (i.e., conveying genetic risk status and its meaning for other family members) remains a critical gap in the field. We aim to describe the iterative process of developing a scalable population-based communication outreach intervention, Your Family Connects, to reach ovarian cancer survivors and close relatives to communicate the potential for inherited risk and to consider genetic counseling. Methods Relational-level theories (e.g., interdependence theory) suggest that interventions to promote family cancer risk communication will be most effective if they consider the qualities of specific relationships and activate motives to preserve the relationship. Informed by these theories, we collaborated with 14 citizen scientists (survivors of ovarian cancer or relatives) and collected 261 surveys and 39 structured interviews over 12 weeks of citizen science activities in 2020. Results The citizen science findings and consideration of relational-level theories informed the content and implementation of Your Family Connects (www.yourfamilyconnects.org). CS results showed survivors favor personal contact with close relatives, but relatives were open to alternative contact methods, such as through health professionals. Recognizing the need for varied approaches based on relationship dynamics, we implemented a relative contact menu to enable survivors identify at-risk relatives and provide multiple contact options (i.e., survivor contact, health professional contact, and delayed contact). In line with relational autonomy principles, we included pros and cons for each option, assisting survivors in choosing suitable contact methods for each relative. Discussion Our developed intervention represents a novel application of relational-level theories and partnership with citizen scientists to expand genetic services reach to increase the likelihood for fair distribution of cancer genomic advances. The Your Family Connects intervention as part of a randomized trial in collaboration with the Georgia Cancer Registry compared with standard outreach.