Women’s Experience of Telehealth Cancer Genetic Counseling
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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.
KeywordsGenetic counseling Telemedicine Videoconferencing Qualitative research Patient satisfaction Telegenetics Telehealth
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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