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dc.contributor.authorGlassey, R.
dc.contributor.authorO'Connor, Moira
dc.contributor.authorIves, A.
dc.contributor.authorSaunders, C.
dc.contributor.authorkConFab Investigators,
dc.contributor.authorO'Sullivan, S.
dc.contributor.authorHardcastle, Sarah
dc.identifier.citationGlassey, R. and O'Connor, M. and Ives, A. and Saunders, C. and kConFab Investigators and O'Sullivan, S. and Hardcastle, S. 2018. Patients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy. The Breast. 40: pp. 116-122.

© 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.

dc.publisherChurchill Livingstone
dc.titlePatients’ perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy
dc.typeJournal Article
dcterms.source.titleThe Breast
curtin.departmentSchool of Psychology
curtin.accessStatusFulltext not available

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