• ‘I call it the hero complex’ – Critical considerations of power and privilege and seeking to be an agent of change in qualitative researchers’ experiences.

      Oakley, Lisa; Fenge, Lee-Ann; Taylor, Bethan; University of Chester, Bournemouth University, My CWA
      There is a relative paucity of studies specifically exploring the experiences of qualitative researchers undertaking research in socially sensitive areas or with marginalised groups. This paper reports some of the findings of a qualitative study using semi-structured interviews to explore the experiences of ten participant researchers. The findings of this study suggest that participant researchers are cognisant of issues of power and privilege in conducting their research. They also illustrate the motivation to enact change via the research findings. However, they demonstrate the complexities of power, privilege and change in the research process and how these concepts can be related to researcher guilt. The study shows that experience can act as a buffer in the qualitative research process but that further work in researcher resilience is required. Participant researchers suggest the need for more honest and open discussions around foundational principles of qualitative research. They suggest further development of cross institutional spaces for these discussions to take place. However, the paper also illustrates the necessity to consider issues of power, privilege and research as social change at individual, institutional and systemic levels,
    • Ongoing processes of managing consent: the empirical ethics of using video-recording in clinical practice and research

      O'Reilly, Michelle; Parker, Nicola; Hutchby, Ian; University of Leicester (Sage, 2011-12-05)
      Using video to facilitate data collection has become increasingly common in health research. Using video in research, however, does raise additional ethical concerns. In this paper we utilise family therapy data to provide empirical evidence of how recording equipment is treated. We show that families made a distinction between what was observed through the video by the reflecting team and what was being recorded onto videotape. We show that all parties actively negotiated what should and should not go ‘on the record’ with particular attention to sensitive topics and the responsibility of the therapist. Our findings have important implications for both clinical professionals and researchers using video data. We maintain that informed consent should be an ongoing process and with this in mind we present some arguments pertaining to the current debates in this field of health care practice.
    • 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.