Skip to main content

Advertisement

SpringerLink
Log in

Implementing a telephone based peer support intervention for women with a BRCA1/2 mutation

  • Original Article
  • Published:
Familial Cancer Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. Cutrona CE (1990) Stress and social support—in search of optimal matching. J Soc Clin Psychol 9(1):3–14

    Article  Google Scholar 

  2. Campbell SH, Phaneuf MR, Deane K (2004) Cancer support programs—do they work? Patient Educ Couns 55:3–15

    Article  PubMed  Google Scholar 

  3. Dunn J, Steginga SK, Rosoman N, Millichap D (2003) A review of peer support in the context of cancer. J Psychosoc Oncol 21(2):55–67. doi:10.1300/J077v21n02_04

    Article  Google Scholar 

  4. Ussher J, Kirsten L, Butow P, Sandoval M (2006) What do cancer support groups provide which other supportive relationships do not? The experience of peer support groups for people with cancer. Soc Sci Med 62(10):2565–2576

    Article  PubMed  Google Scholar 

  5. Giese-Davis J, Bliss-isberg G, Carson K, Star P, Donaghy J, Cordova MJ, Stevens N, Wittenberg L, Batten C, Spiegel D (2006) The effect of peer counseling on quality of life following diagnosis of breast cancer: an observational study. Psychooncology 15(11):1014–1022

    Article  PubMed  Google Scholar 

  6. Pistrang N, Jay Z, Gessler S, Barker C (2013) Telephone peer support for women with gynaecological cancer: benefits and challenges for supporters. Psychooncology 22(4):886–894. doi:10.1002/pon.3080

    Article  PubMed  Google Scholar 

  7. Gray RE, Fitch M, Davis C, Phillips C (1997) A qualitative study of breast cancer self-help groups. Psychooncology 6(4):279–289

    Article  CAS  PubMed  Google Scholar 

  8. Embuldeniya G, Veinot P, Bell E, Bell M, Nyhof-Young J, Sale JEM, Britten N (2013) The experience and impact of chronic disease peer support interventions: a qualitative synthesis. Patient Educ Couns 92(1):3–12. doi:10.1016/j.pec.2013.02.002

    Article  PubMed  Google Scholar 

  9. Gotay CC, Moinpour CM, Unger JM, Jiang CS, Coleman D, Martino S, Parker BJ, Bearden JD, Dakhil S, Gross HM, Lippman S, Albain KS (2007) Impact of a peer-delivered telephone intervention for women experiencing a breast cancer recurrence. J Clin Oncol 25(15):2093–2099. doi:10.1200/JCO.2006.07.4674

    Article  PubMed  Google Scholar 

  10. Crane-Okada R, Freeman E, Kiger H, Ross M, Elashoff D, Deacon L, Giuliano AE (2012) Senior peer counseling by telephone for psychosocial support after breast cancer surgery: effects at six months. Oncol Nurs Forum 39(1):78–89. doi:10.1188/12.ONF.78-89

    Article  PubMed  Google Scholar 

  11. Hoybye MT, Dalton SO, Deltour I, Bidstrup PE, Frederiksen K, Johansen C (2010) Effect of Internet peer-support groups on psychosocial adjustment to cancer: a randomised study. Br J Cancer 102(9):1348–1354. doi:10.1038/sj.bjc.6605646

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  12. Hoey LM, Ieropoli SC, White VM, Jefford M (2008) Systematic review of peer-support programs for people with cancer. Patient Educ Couns 70(3):315–337

    Article  PubMed  Google Scholar 

  13. Salzer MS, Palmer SC, Kaplan K, Brusilovskiy E, Ten Have T, Hampshire M, Metz J, Coyne JC (2010) A randomized, controlled study of Internet peer-to-peer interactions among women newly diagnosed with breast cancer. Psychooncology 19(4):441–446. doi:10.1002/pon.1586

    Article  PubMed  Google Scholar 

  14. Lindberg NM, Wellisch DK (2004) Identification of traumatic stress reactions in women at increased risk for breast cancer. Psychosomatics 45:7–16

    Article  PubMed  Google Scholar 

  15. Meiser B, Butow P, Friedlander M, Barratt A, Schnieden V, Watson M, Brown J, Tucker K (2002) Psychological impact of genetic testing in women from high-risk breast cancer families. Eur J Cancer 38:2025–2033

    Article  CAS  PubMed  Google Scholar 

  16. Croyle R, Smith K, Botkin J, Baty B, Nash J (1997) Psychological responses to BRCA1 mutation testing: preliminary findings. Health Psychol 16:63–72

    Article  CAS  PubMed  Google Scholar 

  17. Metcalfe KA, Liede A, Hoodfar E, Scott A, Foulkes WD, Narod SA (2000) An evaluation of needs of female BRCA1 and BRCA2 carriers undergoing genetic counselling. J Med Genet 37:866–874

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  18. Thewes B, Meiser B, Tucker M, Tucker K (2003) The unmet information and support needs of women with a family history of breast cancer: a descriptive survey. J Genet Couns 12(1):61–76

    Article  PubMed  Google Scholar 

  19. White V, Young MA, Farrelly A, Meiser B, Jefford M, Williamson E, Ieropoli S, Duffy J, Winship I (2014) Randomized controlled trial of a telephone-based peer-support program for women carrying a BRCA1 or BRCA2 mutation: impact on psychological distress. J Clin Oncol 32(36):7

    Article  Google Scholar 

  20. Ieropoli SC, White VM, Jefford M, Akkerman D (2011) What models of peer support do people with colorectal cancer prefer? Eur J Cancer Care (Engl) 20(4):455–465. doi:10.1111/j.1365-2354.2010.01218.x

    Article  CAS  Google Scholar 

  21. White V, Macvean M, Grogan S, D’Este C, Akkerman D, Ieropoli S, Hill D, Sanson-Fisher R (2012) Can a tailored telephone intervention delivered by volunteers reduce the supportive care needs, anxiety and depression of people with colorectal cancer? A randomised controlled trial. Psychooncology 21(10):1053–1062. doi:10.1002/pon.2019

    Article  PubMed  Google Scholar 

  22. Festinger L (1954) A theory of social comparison processes. Hum Relat 7(2):117–140

    Article  Google Scholar 

  23. Taylor SE, Buunk BP, Aspinwall LG (1990) Social comparison, stress, and coping. Pers Soc Psychol Bull 16(1):74–89

    Article  Google Scholar 

  24. Farrelly A, White V, Meiser B, Jefford M, Young MA, Ieropoli S, Winship I, Duffy J (2012) Unmet support needs and distress among women with a BRCA1/2 mutation. Fam Cancer. doi:10.1007/s10689-012-9596-5

    Google Scholar 

  25. Roblin DW (2011) The potential of cellular technology to mediate social networks for support of chronic disease self-management. J Health Commun 16(Suppl 1):59–76. doi:10.1080/10810730.2011.596610

    Article  PubMed  Google Scholar 

Download references

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).

Ethical standard

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.

Author information

Authors and Affiliations

  1. Centre for Behavioural Research in Cancer, Cancer Council Victoria, 615 St Kilda Road, Melbourne, VIC, 3004, Australia

    Ashley Farrelly & Victoria White

  2. Familial Cancer Centre, Peter MacCallum Cancer Centre, 7 St Andrews Place, East Melbourne, VIC, 3002, Australia

    Mary-Anne Young

  3. Strategy and Support Division, Cancer Council Victoria, 615 St Kilda Road, Melbourne, VIC, 3004, Australia

    Michael Jefford

  4. Division of Cancer Medicine, Peter MacCallum Cancer Centre, 7 St Andrews Place, East Melbourne, VIC, 3002, Australia

    Michael Jefford

  5. Early in Life Mental Health Service, Monash Health Mental Health Program, 246 Clayton Road, Clayton, VIC, 3168, Australia

    Sandra Ieropoli

  6. Hereditary Cancer Clinic, Prince of Wales Hospital, High Street, Randwick, NSW, 2031, Australia

    Jessica Duffy

  7. Genetic Medicine, Royal Melbourne Hospital, Department of Medicine, University of Melbourne, 300 Grattan Street, Parkville, VIC, 3050, Australia

    Ingrid Winship

  8. Psychosocial Research Group, Prince of Wales Clinical School, The University of New South Wales, Sydney, 2052, Australia

    Bettina Meiser

Authors
  1. Ashley Farrelly
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Victoria White
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Mary-Anne Young
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Michael Jefford
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Sandra Ieropoli
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Jessica Duffy
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Ingrid Winship
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Bettina Meiser
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Victoria White.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10689-015-9797-9

Keywords

Search

Navigation