Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy
© 2018 Elsevier Ltd. Purpose: To explore the barriers and experiences of accessing information for women who have received genetic risk assessment/testing results for breast cancer (BC) and are considering a bilateral prophylactic mastectomy (BPM) and, exploring participants’ preferences concerning...
| Main Authors: | , , , , , , |
|---|---|
| Format: | Journal Article |
| Published: |
Churchill Livingstone
2018
|
| Online Access: | http://hdl.handle.net/20.500.11937/69119 |
| _version_ | 1848761972933263360 |
|---|---|
| author | Glassey, R. O'Connor, Moira Ives, A. Saunders, C. kConFab Investigators, O'Sullivan, S. Hardcastle, Sarah |
| author_facet | Glassey, R. O'Connor, Moira Ives, A. Saunders, C. kConFab Investigators, O'Sullivan, S. Hardcastle, Sarah |
| author_sort | Glassey, R. |
| building | Curtin Institutional Repository |
| collection | Online Access |
| description | © 2018 Elsevier Ltd. Purpose: To explore the barriers and experiences of accessing information for women who have received genetic risk assessment/testing results for breast cancer (BC) and are considering a bilateral prophylactic mastectomy (BPM) and, exploring participants’ preferences concerning information and support needs. Methods: A qualitative retrospective study guided by interpretative phenomenological analysis was utilised. Semi-structured interviews were conducted with forty-six women who were either considering BPM or had already undergone the surgery. Results: Three themes identified barriers to accessing information; difficulties accessing information, inconsistent information and clinical focus/medicalized information. A fourth theme - preferences of information and support needs, identified three subthemes; these were, psychological support, clearly defined processes and photos of mastectomies/reconstruction surgeries. Conclusions: Barriers to accessing information appeared to be widespread. A lack of integrated services contributed to inconsistent information, and medicalized terminology/clinical focus of consultations further complicated understanding. Preferences for information include clearly defined processes, so women know the pathways after confirmation of familial BC risk. Clinical implications include a multidisciplinary team approach, and a protocol that reflects current practice. |
| first_indexed | 2025-11-14T10:40:10Z |
| format | Journal Article |
| id | curtin-20.500.11937-69119 |
| institution | Curtin University Malaysia |
| institution_category | Local University |
| last_indexed | 2025-11-14T10:40:10Z |
| publishDate | 2018 |
| publisher | Churchill Livingstone |
| recordtype | eprints |
| repository_type | Digital Repository |
| spelling | curtin-20.500.11937-691192018-07-24T07:54:10Z Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy Glassey, R. O'Connor, Moira Ives, A. Saunders, C. kConFab Investigators, O'Sullivan, S. Hardcastle, Sarah © 2018 Elsevier Ltd. Purpose: To explore the barriers and experiences of accessing information for women who have received genetic risk assessment/testing results for breast cancer (BC) and are considering a bilateral prophylactic mastectomy (BPM) and, exploring participants’ preferences concerning information and support needs. Methods: A qualitative retrospective study guided by interpretative phenomenological analysis was utilised. Semi-structured interviews were conducted with forty-six women who were either considering BPM or had already undergone the surgery. Results: Three themes identified barriers to accessing information; difficulties accessing information, inconsistent information and clinical focus/medicalized information. A fourth theme - preferences of information and support needs, identified three subthemes; these were, psychological support, clearly defined processes and photos of mastectomies/reconstruction surgeries. Conclusions: Barriers to accessing information appeared to be widespread. A lack of integrated services contributed to inconsistent information, and medicalized terminology/clinical focus of consultations further complicated understanding. Preferences for information include clearly defined processes, so women know the pathways after confirmation of familial BC risk. Clinical implications include a multidisciplinary team approach, and a protocol that reflects current practice. 2018 Journal Article http://hdl.handle.net/20.500.11937/69119 10.1016/j.breast.2018.05.003 Churchill Livingstone restricted |
| spellingShingle | Glassey, R. O'Connor, Moira Ives, A. Saunders, C. kConFab Investigators, O'Sullivan, S. Hardcastle, Sarah Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy |
| title | Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy |
| title_full | Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy |
| title_fullStr | Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy |
| title_full_unstemmed | Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy |
| title_short | Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy |
| title_sort | patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy |
| url | http://hdl.handle.net/20.500.11937/69119 |