Abstract
Women with a BRCA1/2 gene mutation face complex risk management decisions and communication issues that can lead to increased levels of distress and unmet needs. We describe the implementation of a peer-support program that aims to reduce distress among women with a BRCA1/2 mutation, including peer and support recipient satisfaction with the program, challenges and lessons learnt. Participants with a BRCA1/2 mutation were matched with a trained peer volunteer (also a mutation carrier) to have regular one-on-one phone calls, over 4 months. Details of the calls, including topics discussed, time spent and number, were collected. Peers and recipients completed surveys assessing how they felt the contact went, satisfaction with the program, and preferences for matching. Satisfaction with the program was high for both peers and recipients. 80 % of pairs ended contact through mutual agreement. Peers and recipients differed in the importance placed on age and surgery experience to determine matches. The most challenging aspect of the program for peers was difficulty in contacting recipients. Peer support for women with a BRCA1/2 mutation is feasible. However, to encourage continued involvement by peers and recipients greater flexibility in the method and delivery of contact is needed. We advocate the use of text-messaging and/or email as mechanisms for pairs to arrange and maintain contact. These strategies should be in addition to, rather than replacing, calls. A mixed medium intervention, where recipients can tailor the method of communication to suit their needs, may be preferable and effective, though this would need to be tested.
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Acknowledgments
Thank you to the support recipients and peer volunteers for their participation and commitment to the project. Ms. Deborah Sandler provided advice and assistance on this project and we thank her for her time and efforts. We would like to thank the staff and management of the eight participating Familial Cancer Clinics in New South Wales, Victoria and South Australia for assisting with the recruitment of peers and for assisting or conducting participant recruitment. This project was funded by a National Breast Cancer Foundation project grant (Project PG-08-01). Associate Professor Bettina Meiser received funding from the National Health and Medical Research Council of Australia (Career Development Award Level 2) and the Cancer Institute of New South Wales (Career Development Fellowship).
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study.
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Farrelly, A., White, V., Young, MA. et al. Implementing a telephone based peer support intervention for women with a BRCA1/2 mutation. Familial Cancer 14, 373–382 (2015). https://doi.org/10.1007/s10689-015-9797-9
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DOI: https://doi.org/10.1007/s10689-015-9797-9