The need to Google

‘Googling’ was an online activity participated in by all women (Chapter Six, Section 6.3, Figure 6-22). While not a ‘social media’, it is pertinent to this thesis to discuss aspects of ‘googling’ that are relevant to women’s experiences of LwBBC. ‘Googling’ was often

121 explained by women as a precursor to using social media. Additionally, ‘googling’ and social media were often described as intertwined activities when searching for breast cancer related information. Women talked about how health care professionals discouraged use of Google. Some women were advised by their health care professionals ‘don’t Google’ (Liz); ‘Don’t Google it’ (Sarah J); ‘Don’t Google anything’ (Sarah M); ‘just don’t do it’(Sarah M); ‘Yeah, they do say don’t Google’ (Kirsty);

‘I can remember Googling, the breast cancer nurse did tell me off, because it was a few days before I was having an operation, so I Googled to see what the scar would look like’ (Photo-elicitation: Millie).

This shows health care professionals understand the ubiquity of Google to search for information in everyday life (Fuchs, 2014) and in relation to health issues (Prescott & Mackie, 2017), cancer (An, Wallner & Kirch, 2016; Foroughi, Lam, Lim, Sarema, & Ahmadvand., 2016) and breast cancer (Wang et al., 2012). The ‘don’t Google’ narrative stems from a fear that social media use perpetuates the spread of healthcare misinformation (Rupert et al., 2014). Women however demonstrate a complex relationship between taking professional advice and a need to understand more in the immediate aftermath of diagnosis. Despite professional advice, all women used Google in relation to their breast cancer experiences, including the healthcare professionals. When Sarah J talked about her

relationship to Google she invoked her professional identity as a health care professional. She described telling people, attending her clinic, not to use Google because they do not know ‘what is true’ or what is ‘real’. She experienced service users coming to the wrong

conclusions by ‘Googling’ but then makes her conflict about using Google clear - ‘but I do it myself’. She positions Google as synonymous with the internet – ‘that’s where you find stuff on the internet’ and demonstrates the strength of her relational tie to Google ‘I do not know what I’d do without it’. Sarah’s experience perhaps encapsulates the dichotomy between what clinicians prefer– no Googling - and women’s taken for granted health information searching processes (Prescott & Mackie, 2017). This reflects women’s agency in seeking to satisfy informational needs not met within clinical relationships. Kirsty described a culturally embedded taken for granted use of Google as a ‘first port of call’ (Kirsty) for information. Rather than seeking to disempower women through use of a ‘don’t Google’ discourse, understanding women’s existing information searching behaviours should be used to guide healthcare practitioner’s advice which should include clear guidance on appropriate online

122 sources of support. Indeed, a role for nurses in educating patients in how to appraise cancer related information found online, through evidence-based guidelines, has been advocated by Gage-Bouchard et al., (2017).

For some women the need for information begins prior to receiving a diagnosis of breast cancer. Liz and Jayne talked about ‘Googling’ after triple diagnostic testing49_{, prior to}

receiving a formal diagnosis; meeting their oncologist; and being advised ‘don’t Google’. They suggest that comments made by professionals within the diagnostic setting ‘it does look suspicious’ (Jayne) and the process itself - ‘the process took about three hours so I kind of knew there was something wrong, erm in the back of my mind’ (Liz) - influence their use of Google post diagnostic testing. Jayne describes her responses as she sat in her car after hearing ‘it does look suspicious’.

‘I was sat in the car and it was almost like I was being pushed off this merry go round but I was desperate to hang on because I was thinking well it might not be, but actually I really think it is, and I need to get home and get on the internet and find out, cos I’m a Googler, which I know a lot people say don’t Google things like that, but I think because I’m used to an environment where I can use key words in research and that sort of thing erm I felt quite confident that I’d be able to find out and I needed to find out something’ (Photo- elicitation: Jayne).

In the immediate aftermath of testing, Jayne voices the complexity of coping with the forthcoming results of the diagnostic tests through internal dialogue ‘it might not be’ and ‘I really think it is’. Jayne invokes two identities –a ‘Googler’ and being an academic through voicing her confidence in using ‘key words’ to ‘find out’. By invoking her professional identity, she is more able to counter the ‘don’t Google’ narrative proffered by generalised ‘people’. She does not express a need to talk to anyone but to ‘get home’ to ‘Google’,

demonstrating a taken for granted assumption that ‘Google’ will provide relevant, timely and appropriate information. Jayne’s recollection prompts questions about how women respond to notions of potential threat; the role of healthcare professionals in supporting women during and following diagnostic testing; and potentially an expectation that women wait for results passively, and obediently ‘don’t Google’. Those who utilise Google as part of their everyday

49_{The triple diagnostic assessment consists of clinical assessment, mammography and/or ultrasound imaging,} and fine needle aspiration or core biopsy (NICE, 2017).

123 professional experiences, and/or part of their daily lives, may gain information for themselves prior to a formal diagnosis. Arguably, given online information seeking is a cultural practice (ONS, 2017) those involved in diagnostic testing should be signposting women looking for further information to useful resources such as the WoMMeN hub (University of Salford, 2017) which can provide information, empathy and support from mammographers and other women involved in breast screening. To my knowledge, work exploring women’s

information seeking behaviours post diagnostic testing/pre-diagnosis confirmation, has not been explored in the literature and is worthy of further investigation. An absence of clear support processes for women waiting for results suggests a gap in current healthcare provision.