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Journal of Genetic Counseling

, Volume 19, Issue 5, pp 463–472 | Cite as

Women’s Experience of Telehealth Cancer Genetic Counseling

  • Elvira M. ZilliacusEmail author
  • Bettina Meiser
  • Elizabeth A. Lobb
  • Judy Kirk
  • Linda Warwick
  • Katherine Tucker
Original Research

Abstract

Telegenetics offers an alternative model of delivering genetic counseling to rural and outreach areas; however there is a dearth of qualitative research into the patient’s experience. Twelve women who had received telemedicine genetic counseling for hereditary breast and/or ovarian cancer (HBOC) within the previous 12 months participated in a semi-structured telephone interview. The interview explored women’s experience with telegenetics, satisfaction, perceived advantages and disadvantages and quality of the interaction with their genetic professionals. Overall women were highly satisfied with telegenetics. Telegenetics offered them convenience and reduced travel and associated costs. The majority of women described feeling a high degree of social presence, or rapport, with the off-site genetic clinician. One woman with a recent cancer diagnosis, reported that telemedicine was unable to meet her needs for psychosocial support. This finding highlights the need to be mindful of the psychosocial support needs of women with a recent diagnosis being seen via telegenetics. Patients attending for HBOC genetic counseling are generally highly satisfied with the technology and the interaction. Care should be taken, however, with patients with more complex psychosocial needs.

Keywords

Genetic counseling Telemedicine Videoconferencing Qualitative research Patient satisfaction Telegenetics Telehealth 

Notes

Acknowledgements

We are most grateful for the valuable contribution of all the women who participated in the project. Without the assistance of the recruiting genetic counselors Sian Greening, Gillian Bleazby and Bruce Hopper, this project would not be possible. We are also grateful to Dr Shab Mireskandari, A/Professor Kristine Barlow-Stewart and Dr Tracey Dudding for their input into the development of this project. A/Professor Bettina Meiser is supported by an NHMRC Career Development Award (ID 350989). This research was funded through a Strategic Research Partnership Grant from the New South Wales Cancer Council (SRP 06-X5).

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Copyright information

© National Society of Genetic Counselors, Inc. 2010

Authors and Affiliations

  • Elvira M. Zilliacus
    • 1
    • 2
    • 9
    Email author
  • Bettina Meiser
    • 1
    • 3
  • Elizabeth A. Lobb
    • 4
    • 5
    • 6
  • Judy Kirk
    • 7
  • Linda Warwick
    • 8
  • Katherine Tucker
    • 1
  1. 1.Department of Medical OncologyPrince of Wales HospitalRandwickAustralia
  2. 2.School of PsychiatryThe University of New South WalesRandwickAustralia
  3. 3.Prince of Wales Clinical SchoolThe University of New South WalesRandwickAustralia
  4. 4.Calvary Health Care SydneyKogarahAustralia
  5. 5.WA Centre for Cancer & Palliative CareCurtin University of TechnologyBentleyAustralia
  6. 6.School of Nursing, Midwifery and Post-graduate MedicineEdith Cowan UniversityPerthAustralia
  7. 7.Familial Cancer ServiceWestmead HospitalWestmeadAustralia
  8. 8.ACT Genetics ServiceCanberra HospitalWodenAustralia
  9. 9.Psychosocial Research GroupPrince of Wales HospitalRandwickAustralia

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