Localización subcelular de la 5-LO

Epistemology “is a way of understanding and exploring how we know what we know” (Crotty, 1998, p.3). Unifying all interpretivist approaches is a “phenomenological base, which stipulates that person and world are inextricably related through lived experiences of the world” (Sandberg, 2005, p.43). A subjectivist epistemology understands women’s experiences of breast cancer as mediated through the specific culture, historical time, and language, in which they are situated (Sandberg, 2005). This is particularly relevant in exploring social media use by women LwBBC, given its arrival as a relatively recent healthcare phenomenon with Facebook, Twitter and You Tube for example, still less than fifteen years old.

Indeed, Brabham (2015) argues that social media researchers should be giving more attention to studying ordinary, everyday topics. Whilst LwBBC cannot be categorised in any

straightforward way as ‘ordinary’, the definition of cancer survivorship (section 1.1.)

suggests LwBBC can be theorized as an ‘everyday’ activity. Brabham (2015) comments, “the vast majority of what happens on social media is unremarkable” (p.1) but the attention of social media scholars has become caught up in big data sets or “the edge cases” (p.1).

Somewhat ironically, Brabham referencing the Arab Spring, reminds us that “very few social media users use social media tools to coordinate revolutions” (2015, p.1) and calls upon

59 researchers to understand the significance of everyday use; to explore the nuance of mediated human experiences. He advocates “actually talking to social media users” (p.2) to ensure new forms of sociality are not overlooked or understated.

As discussed in Chapter Two (section 2.3), a major focus of psychosocial inquiry is on everyday experience (Woodward, 2015). The notion of psychosocial health as bringing together “the personal and the political and the individual and the social” (Woodward, 2015, p.4), suggests meanings women attach to social media use in relation to their health

experiences may be complex and entangled. One way of establishing “how we know what we know” about women’s everyday use of social media is to situate their experiences in ‘dailiness’ (Apthekar, 1989). ‘Dailiness’ is concerned with familiarity and the “taken-for- granted character of daily living” (Moores, 2007). Utilised in feminist inquiry, ‘dailiness’ focuses upon the meanings women attribute to aspects of their daily lives and has been applied to critically explore aspects of domesticity. Its focus is on women’s ordinary lives and:

“the struggle to preserve quality of life for your family in the face of exploitation and oppression, to hold on to and nurture a positive sense of self in a culture that demeans and devalues you” (Sprague & Kobrynowicz, 2006, p.33).

Here there is potential for the wider debates about women’s ‘oppression’ and the

‘devaluation’ of women’s lives. However, what is most pertinent to this study is how this definition of ‘dailiness’ corresponds with aspects of women’s lived experiences of breast cancer (struggle; quality of life; quality of life for family; nurturing a positive sense of self; being part of wider social culture; being devalued or demeaned). ‘Dailiness’ in this thesis therefore explores social media use as embedded - a taken for granted aspect – of life today and suggests a way of knowing from the meanings women give to their (digital) labours ("Theory, Feminism, and Feminist Theory", n.d.).

While ‘being on’ social media is now a ubiquitous aspect of everyday life, so too is mobile phone and camera phone use (Bender et al. 2013; Cruz & Thornham, 2013; Erfani et al., 2016; Hjorth, 2007; Malik, Dhir & Nieminen, 2016) and life without them may seem inconceivable (Baym, 2015). Attending to the ‘dailiness’ of social media use therefore necessitates an analytical approach which “explores the patterns women create and the meanings women invent each day and over time” Apthekar, 1989, p.43). Apethekar (1989)

60 argues that the point is not to describe every aspect of daily life or to prioritise some activities as more important than others but to take a “bottom-up” approach, enabling a search for the meanings women articulate in relation to the daily activities of their lives. She argues that by discovering and connecting these meanings, a “map” or a different way of seeing women’s realities from women’s point of view can be developed. Interpretivist knowledge creation therefore involves a joint process or co-construction between the researcher and the researched together (Yost & Chmielewski, 2013). This co-construction positions the researcher and participants as embedded together in subjective knowledge practices and argues that we cannot separate ourselves from what we know (Cohen & Crabtree, 2006). It is the co-construction of knowledge through cultural artefacts and practices that are used to negotiate ‘truth’ (Cohen & Crabtree, 2006) in relation to social media use and its role in supporting psychosocial health. The next section explores how visual methods within interviews are used as a way of co-constructing knowledge.

Visual methods as methodology

Guba and Lincoln (1994) (section 4.2.2) asked “how can the inquirer go about finding out whatever he or she believes can be known?” From an epistemological perspective, in seeking to give voice to women LwBBC, I had a commitment to select methods that enabled

participants to interpret and give meaning to their individual and unique experiences (Hansen-Ketchum & Myrick, 2008; Harrison, 2002). Furthermore, in seeking to develop knowledge about social media use, the importance of Western visual culture and its

embeddedness in everyday life (Landry, 2006; Mirzoeff, 2009) needed to be acknowledged. As Reavey and Prosser (2012) state “visuals are pervasive in public, work, and private space, and we have no choice but to look” (p.2). Vision is a dominant, yet taken for granted, way of knowing in Western society (Harrison, 2002). Visual methods were therefore selected as an appropriate methodology to gain access into the meaning women give to their social media use and used as an attempt to ensure conversation was rooted in real life examples of

women’s day to day use of social media. Visual methods seemed an obvious way to explore what can be known about women’s social media use when used as facilitators of

conversations and to initiate and direct conversations. This was achieved through using two different methods using photographs – photo-elicitation and photo-production. Photo-

61 elicitation techniques use pre-existing photographs or images within the research interview while photo-production techniques ask participants to create photographs as part of the research process (Willig, 2013). In the photo-production study, I asked women to take their own photographs to, in effect, provide a visualised voice. In the remainder of this section, I will outline the use of visual methods in psychology and health research and the benefits of using visual methods to address the aims of this study. This section concludes with a brief introduction to photo-elicitation and photo-production.

A range of visual methods including the use of photographs, video and film, timelines, painting, drawing, art and collage are increasingly being used to explore the psychosocial aspects of health and well-being (Frith & Harcourt, 2007). Indeed, Silver (2013) argues that visuals are a “form of language” (p.163) which provide the researcher with important information about participants, “the culture they inhabit and/or the researchers’ own

subjectivity” (p.163). Pink (2007) and Radley (2009) contest that limitations exist in looking at people’s experiences using language alone. They argue that a multi-modal approach utilising ‘extra-discursive modalities’ is beneficial to making sense of health experiences. Frith and Harcourt (2007) positioned visual methods as useful approaches to access information which might be difficult to access using other methods, while Gillies et al., (2005) suggests visual methods alter the voice of the research and have the capacity to disrupt ‘well-rehearsed’ accounts. These enable both the researcher, and the subsequent audiences for the research findings, to “broaden their experience, comprehension and representation of the topic” (Silver, 2013, p.157) under investigation. Previous research has shown women have ‘well-rehearsed’ cancer narratives (Kendall et al., 2015), however it is unlikely that women will have ‘well-rehearsed’ accounts of their social media use in relation to LwBBC given it is not a topic woman are frequently asked about (see Chapter 3; section 3.2.7). Through using visual prompts during the interview, more complex and layered accounts (Collier, 1957, cited in Reavey, 2011) are anticipated as women vocalise and share meaning about the way they use different social media. Harrison (2002) argues this occurs because of reflexivity on the part of the participant in studying the images under consideration and their ‘verbalisation’ which produces the data for onward analysis and interpretation. Visual tools can change the dynamic within the interview setting with participants feeling less pressured when discussing sensitive topics (Prosser, 2011). This is because the ‘artefact’ removes the ‘spotlight’ as people need not speak directly about a topic they may feel vulnerable about but

62 instead “work through a material go-between” enabling the expression of more difficult “memories and powerful emotions” (p.484). It is an approach which also works to recognise participants as experts in their own lives (Clark-Ibanez, 2004).

Visual approaches are not considered as realist methods employed to seek out “objective knowledge about the world” but are relativist in that they seek to gain insight into how women view their “particular world at a particular moment in time” (Silver, 2013, p. 163). Guillemin (2004) advocates the use of visual methods to understand experiences of health and illness arguing that text-based data such as field notes and transcripts restrict the multiple ways illness is understood, enacted and experienced. Given the routes from diagnosis already discussed (Chapter Two, section 2.2), we know that women’s physical experiences of illness and health are varied. At the same time their ongoing psychosocial needs (see section 2.3.1) are experienced in the wider context of societal, political and environmental influences. Utilising visual methods within semi-structured interviews may help women to express these experiences more freely. de Boer and Slatman (2014) for instance, identified how women produced additional insight into their experiences of breast cancer through blogging. They found one woman posting ‘empty’ blog posts – posts with no text or visual content. They interpreted empty posts as “silent screams of frustration” (p.20) reflecting “a ‘chaos story’ through a wordless story. The non-visual, visual was seen to vocalise experience by visualising a voice which lay beyond what the blogger was able to achieve through written narration. The ‘empty’ visual conveyed a sense of the experience as unspeakable. In this instance, the authors were only able to make interpretations based on the secondary data they were analysing. Had they been able to speak to the blogger, a richer, deeper interpretation of the ‘empty blog post’ may have been identified.

The growth of platforms such as Instagram and Snapchat are reflections of the changing influence of visual culture. The internet has been moving from a medium centered almost completely on text, to one increasingly image led (Mirzoeff, 2009). It is estimated that 1.8 billion images are uploaded daily to Twitter, Instagram and Facebook (Baker, 2016). In 2017, more than 4 million hours of content was uploaded to YouTube every day, and users watched 5.97 billion hours of YouTube videos each day (Schultz, 2017). This focus on visual culture is so prominent within the strategies of social media organisations that in 2016, Facebook launched a system which can ‘read’ photos and automatically tag every photo, so that

63 visually impaired people can ‘see’ what appears in them (Baker, 2016). Reavey (2011) argues that images posted on social media sites serve to tell us how we should look and how we should feel; they convey what is ‘acceptable’ and what is ‘normal’. In an era when women can continually view and edit images of themselves and of others, it is important that as researchers we acknowledge that we do not communicate by text alone (Silver, 2013). Given the psychosocial challenges women experience from challenges to their appearance such as breast loss, hair loss and weight gain (Freedman, 1994; Helms, O'Hea & Corso, 2008; Hunt & McHale, 2005; Mao et al., 2013; Sun, Ang, Ang & Lopez, 2017; Trusson & Pilnick 2017), it is important to understand how women navigate dominant cultural discourses related to body image. Using visual methods creates opportunities to explore, alongside the use of language, how women’s experiences are “culturally and socially contexted and bounded” and “mediated by subjectivity” (Harrison, 2002, p.857).

For instance, when women upload visual content into online spaces, they are making visible their social and pictorial worlds. Ruby (2005) points to the uploading of images as social processes in which the uploaded visual acts as an object “produced with the intention of communicating something to someone” (p.165). That said, women’s experiences of LwBBC have not been widely explored with women, using visual methodologies, except for Frith and Harcourt’s (2007) study of women’s experiences of chemotherapy. In this study, women participated in semi-structured interviews– in advance of receiving chemotherapy and after completion of treatment. They took photographs using a 27-exposure, single-use, disposable camera during treatment and discussed these photographs in the second interview. This limited exploration using visual methods is perhaps surprising given the body of literature which has explored women’s sense of disrupted appearance (Doh & Pompper, 2015; Frith, 2011; Mathieson & Stam, 1995; Piot-Ziegler, Sassi, Raffoul & Delaloye, 2010; Trusson, 2013) when LwBBC.