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Journal of Genetic Counseling

, Volume 23, Issue 5, pp 814–823 | Cite as

A Genetic Counseling Intervention to Facilitate Family Communication About Inherited Conditions

  • Clara Gaff
  • Jan Hodgson
Original Research

Abstract

This paper describes the development and implementation of the first intervention to facilitate family communication of genetic information based on a genetic counseling model of practice. The intervention is telephone-based and therefore designed to complement face-to-face genetic counseling consultations. It was developed by firstly reviewing the literature and a model of genetic counseling practice, leading to definition of seven core principles underpinning the intervention. A counseling framework based on these principles was developed through iterative role playing and review, tested for consistency with good practice and piloted on ten study participants. It was found to be feasible to implement and consistent with good genetic counseling practice. Implementation included training of the genetic counselors who would deliver the intervention as part of a randomized controlled trial. Noteworthy deviations from good genetic counseling practice were observed, with unexpected additional insights into the ‘black box’ of genetic counseling that may have wider implications and would benefit from further investigation. The intervention is currently being evaluated in a randomized controlled trial, to assess its impact on the number of family members attending genetic services.

Keywords

Family communication Genetic counseling Intervention Randomized controlled trial Model of practice 

Notes

Acknowledgments

The authors would like to thank Loren Plunkett and Jean Paul for transcription of the role plays and pilot calls. Jean Paul also assisted with training of the genetic counselors. Our thanks to the genetic counselors involved for their enthusiasm and participation and to the GIF project steering committee (Jane Halliday, MaryAnne Aitken, Sylvia Metcalfe, Martin Delatycki, Susan Donath, Ingrid Winship and Loane Skene). The authors acknowledge the funding provided by the National Health and Medical Research Council (NHMRC) Project ID 491214 – Communication of genetic information within families (The GIF project).

This work was supported by the Victorian Government’s Operational Infrastructure Support Program.

Conflict of Interest

The authors declare they have no conflict of interest.

References

  1. Biesecker, B. B., & Peters, K. F. (2001). Process studies in genetic counseling: peering into the black box. American Journal of Medical Genetics, 106(3), 191–198.PubMedCrossRefGoogle Scholar
  2. Chivers Seymour, K., Addington-Hall, J., Lucassen, A. M., & Foster, C. L. (2010). What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. Journal of Genetic Counseling, 19(4), 330–342.PubMedCrossRefGoogle Scholar
  3. Craig, P., Dieppe, P., Macintyre, S., Mitchie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: the new Medical Research Council guidance. British Medical Journal (International Edition), 337(7676), 979–983.Google Scholar
  4. Daly, M., Barsevick, A., Miller, S., Buckman, R., Costalas, J., Montgomery, S., & Bingler, R. (2001). Communicating genetic test results to the family: a six step, skills building strategy. Family and Community Health, 24(3), 13–26.PubMedCrossRefGoogle Scholar
  5. De Geus, E., Aalfs, C. M., Menko, F. H., Sijmons, R. H., de Haes, J. C. J. M., & Smets, E. M. A. (2012). Sharing genetic cancer information with relatives: development of an instrument to assess counselees’ knowledge, motivation and self-efficacy. European Journal of Human Genetics, 20(1), 430.Google Scholar
  6. Egan, G. (2002). The skilled helper (7th ed.). Pacific Grove: Brookes/Cole.Google Scholar
  7. Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N., & Matthews, E. (2003). To tell or not to tell: barriers and facilitators in family communication about genetic risk. Clinical Genetics, 64(4), 317–326.PubMedCrossRefGoogle Scholar
  8. Forrest, L. E., Delatycki, M. B., Skene, L., & Aitken, M. (2007). Communicating genetic information in families–a review of guidelines and position papers. European Journal of Human Genetics, 15(6), 612–618.PubMedCrossRefGoogle Scholar
  9. Forrest, L. E., Burke, J., Bacic, S., & Amor, D. J. (2008a). Increased genetic counseling support improves communication of genetic information in families. Genetics in Medicine, 10(3), 167–172.PubMedCrossRefGoogle Scholar
  10. Forrest, L. E., Curnow, L., Delatycki, M. B., Skene, L., & Aitken, M. (2008b). Health first, genetics second: exploring families’ experiences of communicating genetic information. European Journal of Human Genetics, 16(11), 1329–1335.PubMedCrossRefGoogle Scholar
  11. Forrest, L. E., Delatycki, M. B., Curnow, L., Skene, L., & Aitken, M. (2010). Genetic health professionals and the communication of genetic information in families: practice during and after a genetic consultation. American Journal of Medical Genetics Part A, 152A(6), 1458–1466.PubMedGoogle Scholar
  12. Gaff, C. L., Collins, V., Symes, T., & Halliday, J. (2005). Facilitating family communication about predictive genetic testing: probands’ perceptions. Journal of Genetic Counseling, 14(2), 133–140.PubMedCrossRefGoogle Scholar
  13. Gaff, C. L., Clarke, A. J., Atkinson, P., Sivell, S., Elwyn, G., Iredale, R., & Edwards, A. (2007). Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics, 15(10), 999–1011.PubMedCrossRefGoogle Scholar
  14. Gaff, C. L., Galvin, K. M., & Bylund, C. L. (2010). Facilitating family communication about genetics in practice. In C. L. Gaff & C. L. Bylund (Eds.), Family communication about genetics: Theory and practice (pp. 243–272). NY: Oxford University Press.Google Scholar
  15. Godard, B., Hurlimann, T., Letendre, M., & Egalite, N. (2006). Guidelines for disclosing genetic information to family members: from development to use. Familial Cancer, 5(1), 103–116.PubMedCrossRefGoogle Scholar
  16. Hodgson, J., & Gaff, C. (2013). Enhancing family communication about genetics: ethical and professional dilemmas. Journal of Genetic Counseling, 22(1), 16–21.PubMedCrossRefGoogle Scholar
  17. Kessler, S. (1997). Psychological aspects of genetic counseling. IX. Teaching and counseling. Genetic Counseling, 6(3), 287–295.CrossRefGoogle Scholar
  18. Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K., Vernon, S. W., & Gritz, E. R. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiology, Biomarkers and Prevention, 12(4), 304–313.PubMedGoogle Scholar
  19. Koerner, A. F., LeRoy, B., & McCarthy Veach, P. (2010). Family communication patterns. In C. L. Gaff & C. L. Bylund (Eds.), Family communication about genetics: Theory and practice (pp. 184–198). New York: Oxford University Press.Google Scholar
  20. Montgomery, S. V., Barsevick, A. M., Egleston, B. L., Bingler, R., Ruth, K., Miller, S. M., & Daly, M. B. (2013). Preparing individuals to communicate genetic test results to their relatives: report of a randomized control trial. Familial Cancer, 12(3), 537–546.PubMedCentralPubMedCrossRefGoogle Scholar
  21. Plantinga, L., Natowicz, M. R., Kass, N. E., Hull, S. C., Gostin, L. O., & Faden, R. R. (2003). Disclosure, confidentiality, and families: experiences and attitudes of those with genetic versus nongenetic medical conditions. American Journal of Medical Genetics, 119C(1), 51–59.PubMedCrossRefGoogle Scholar
  22. Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Hahn, S. E., Strecker, M. N., & Williams, J. L. (2006). A new definition of Genetic Counseling: National Society of Genetic Counselors’ Task Force report. Journal of Genetic Counseling, 15(2), 77–83.PubMedCrossRefGoogle Scholar
  23. Rollnick, S., Miller, W. R., & Butler, C. (2008). Motivational interviewing in health care. New York: The Guilford Press.Google Scholar
  24. Schmuckler, M. A. (2001). What is ecological validity? A dimensional analysis. Infancy, 2(4), 419–436.CrossRefGoogle Scholar
  25. Suthers, G. K., Armstrong, J., McCormack, J., & Trott, D. (2006). Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. Journal of Medical Genetics, 43(8), 665–670.PubMedCentralPubMedCrossRefGoogle Scholar
  26. Thorpe, K. E., Zwarenstein, M., Oxman, A. D., Treweek, S., Furberg, C. D., Altman, D. G., & Chalkidou, K. (2009). A pragmatic–explanatory continuum indicator summary (PRECIS): a tool to help trial designers. Canadian Medical Association Journal, 180(10), E47–E57.PubMedCentralPubMedCrossRefGoogle Scholar
  27. Veach, P. M., Bartels, D. M., & Leroy, B. S. (2007). Coming full circle: a reciprocal-engagement model of genetic counseling practice. Journal of Genetic Counseling, 16(6), 713–728.PubMedCrossRefGoogle Scholar
  28. Wiseman, M., Dancyger, C., & Michie, S. (2010). Communicating genetic risk information within families: a review. Familial Cancer, 9(4), 691–703.PubMedCrossRefGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2014

Authors and Affiliations

  1. 1.Murdoch Childrens Research InstituteMelbourneAustralia
  2. 2.Department of PaediatricsUniversity of MelbourneMelbourneAustralia
  3. 3.Department of MedicineUniversity of MelbourneMelbourneAustralia
  4. 4.Walter and Eliza Hall Institute of Medical ResearchMelbourneAustralia

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