Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives

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Abstract

Cancer genetic counselees receive individualized information regarding heightened risks and medical recommendations which is also relevant for their at-risk relatives. Unfortunately, counselees often insufficiently inform these relatives. We designed an intervention aimed at improving counselees’ knowledge regarding which at-risk relatives to inform and what information to disclose, their motivation to disclose, and their self-efficacy. The intervention, offered by telephone by trained psychosocial workers, is based on the principles of Motivational Interviewing. Phase 1 of the intervention covers agenda setting, exploration, and evaluation, and phase 2 includes information provision, enhancing motivation and self-efficacy, and brainstorming for solutions to disseminate information within the family. Fidelity and acceptability of the intervention were assessed using recordings of intervention sessions and by counselee self-report. A total of 144 counselees participated. Psychosocial workers (n = 5) delivered the intervention largely as intended. Counselees highly appreciated the content of the intervention and the psychosocial workers who delivered the intervention. In the sessions, psychosocial workers provided additional and/or corrective information, and brainstorming for solutions was performed in 70 %. These results indicate that this intervention is feasible and warrants testing in clinical practice. For this, a randomized controlled trial is currently in progress to test the intervention’s efficacy.

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de Geus, E., Eijzenga, W., Menko, F. H., Sijmons, R. H., de Haes, H. C. J. M., Aalfs, C. M., & Smets, E. M. A. (2016). Design and Feasibility of an Intervention to Support Cancer Genetic Counselees in Informing their At-Risk Relatives. Journal of Genetic Counseling, 25(6), 1179–1187. https://doi.org/10.1007/s10897-016-9948-7

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