Online information and support needs of women with advanced breast cancer: a qualitative analysis

Emma Kemp, Bogda Koczwara, Phyllis Butow, Jane Turner, Afaf Girgis, Penelope Schofield, Nicholas Hulbert-Williams, Janelle Levesque, Danielle Spence, Sina Vatandoust, Ganessan Kichenadasse, Amitesh Roy, Shawgi Sukumaran, Christos Karapetis, Caroline Richards, Michael Fitzgerald, Lisa Beatty

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2 Citations (Scopus)

Abstract

Purpose: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face-to-face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of women with ABC could be addressed in an online intervention, and (ii) how an existing intervention for patients with early stage cancer could be adapted for women with ABC. Methods: Women with ABC participated in telephone interviews about their information and support-seeking preferences (N = 21) and evaluated an online intervention focused on early-stage cancer (N = 15). Interviews were transcribed and underwent thematic analysis using the framework method to identify salient themes. Results: Participants most commonly sought medical, lifestyle-related, and practical information/support; however, when presented with an online intervention, participants most commonly gave positive feedback on content on coping with emotional distress. Difficulty finding information and barriers to using common sources of information/support including health professionals, family and friends, and peers were reported; however, some women also reported not wanting information or support. All participants evaluating the existing intervention gave positive feedback on various components, with results suggesting an online intervention could be an effective means of providing information/support to women with ABC, given improved specificity/relevance to ABC and increased tailoring to individual circumstances and preferences. Conclusions: Adaptation of an existing online intervention for early stage cancer appears to be a promising avenue to address the information and support needs of women with ABC.

Original languageEnglish
Pages (from-to)3489-3496
Number of pages8
JournalSupportive Care in Cancer
Volume26
Issue number10
DOIs
Publication statusE-pub ahead of print - 2018

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    Kemp, E., Koczwara, B., Butow, P., Turner, J., Girgis, A., Schofield, P., Hulbert-Williams, N., Levesque, J., Spence, D., Vatandoust, S., Kichenadasse, G., Roy, A., Sukumaran, S., Karapetis, C., Richards, C., Fitzgerald, M., & Beatty, L. (2018). Online information and support needs of women with advanced breast cancer: a qualitative analysis. Supportive Care in Cancer, 26(10), 3489-3496. https://doi.org/10.1007/s00520-018-4206-1