• Internet use and preferences among women living with advanced breast cancer

      Kemp, Emma; Koczwara, Bogda; Turner, Jane; Girgis, Afaf; Schofield, Penelope; Hulbert-Williams, Nicholas J.; Levesque, Janelle V.; Spence, Danielle; Vatandoust, Sina; Kichenadasse, Ganessan; et al. (Wiley, 2019-02-21)
      Despite high distress and unmet informational and psychosocial needs, and recommendations for development of advanced breast cancer (ABC)-specific resources, there remains a paucity of appropriate, accessible psychological interventions. This survey study examined internet use and preferences of women with ABC, to the gauge feasibility of providing an ABC- specific internet intervention. Most participants (83%) used the internet daily. Results indicated most women with ABC would find an ABC-specific internet intervention helpful, and that it would address gaps in current internet resources, including provision of strategies to manage treatment side effects and fear of cancer progression.
    • Online information and support needs of women with advanced breast cancer: A qualitative analysis

      Kemp, Emma; Koczwara, Bogda; Butow, Phyllis N.; Turner, Jane; Girgis, Afaf; Schofield, Penelope; Hulbert-Williams, Nicholas J.; Levesque, Janelle V.; Spence, Danielle; Vatandoust, Sina; et al. (Springer, 2018-04-24)
      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 individuals circumstances and preferences. Conclusions: Adaptation of an existing online intervention for early stage cancer appears a promising avenue to address the information and support needs of women with ABC.