Young Cancer on <em>Instagram</em>

Abstract

Introduction Although our postmodern (media) society should provide room for diversity and otherness (Greer and Jewkes), some people are not integrated but rather excluded. Social exclusion can be defined as the discrepancy of the wish of being part of a society and its possibilities to be part of it and contains feelings or experiences of physically or emotionally exclusion from others (Burchardt et al.; Riva and Eck). It is not really known what or who is responsible for social exclusion (Hills et al.), but it is certain that it is not that rare phenomenon — especially in social media. Here, digital engagement characteristics (likes, follows, shares, and comments) are important to build up, renew, and strengthen different forms of relationships. But if users do not receive any feedback, the risk of feeling social excluded increases. In this context, adolescents and young adults as the primary audience are the focus of interest. They seem to be especially vulnerable when it comes to social ostracism within social media and its potential negative psychological effects (Timeo et al.). The variety of social exclusion allows multiple perspectives on the topic. Hereafter we focus on young people with cancer. This life-threatening disease can increase the risk of being excluded. Cancer as a chronic illness and its negative effects on people’s lives, such as potential death, long-term and late effects, private and social burdens (Hilgendorf et al.), show an obvious otherness compared to the healthy peer, which might push ostracism effects and social exclusion of young people within social media to a new level. We actually can see a large number of (included) young cancer patients and survivors using social media for information sharing, exchanging ideas, networking, and addressing their unmet needs of the real world (Chou et al.; Chou and Moskowitz; Ruckenstuhl et al.; Perales et al.). Especially Instagram is becoming more present in social cancer communication (Stage et al.), though it actually increasingly represents cheerful, easy-going content (Hu et al.; Waterloo et al.). Judging by the number of cancer-related hashtags, we can see more and more public cancer bloggers thematise cancer illness on Instagram. But less is known about the actual content posted by cancer bloggers on Instagram. This leads us to the question, to what extent is cancer content found and included or excluded on public Instagram profiles of German speaking cancer bloggers? And is there a difference between biography descriptions with visible cancer references and posted motifs, captions and hashtags? Chronic Illnesses, Identities, and Social Networks Chronic illnesses such as cancer not only affect the body, but also impact on the identity of those affected. It is understood as life-changing with both short-term and long-term effects on the identity-forming process and on the already developed identity (Bury; Charmaz; Leventhal et al.). With their diagnosis, adolescents and young adults face a double challenge: they have to cope with the typical developmental changes of this age group and they have to negotiate these changes against the background of a life-threatening illness (Makros and McCabe; Zebrack and Isaacso). Miller shows three levels of identity for young cancer patients (pre-cancer identity, patient identity, and post-cancer identity), which are used regularly and flexibly by those affected in their interaction with the social network in order to maintain relationships and to minimise communicative misunderstandings. Moreover, the negotiation of the self within the social network and its expectations, especially towards convalescent people, can lead to paradoxical situations and identities of young people with cancer (Jones et al.). Although therapeutic measures are completed and patients may be discharged as cured, physical, cognitive, and emotional challenges with regard to the illness (e.g. fatigue, loss of performance, difficulty concentrating) still have to be overcome. These challenges, despite recovery, cause those affected to feel they still belong to a cancer group which they have actually largely outgrown medically and therapeutically, and also continually remind them of their present difference from the healthy peer group. To minimise these differences, narratives are the means for those affected to negotiate their new illness-related identity with their network (Hyde). These processes can be digitally transformed on blogs or to age-appropriate social network sites (SNS), which enable users to record and communicate experiences and emotions in an uncomplicated, situational manner and with fewer inhibitions (Kim and Gilham). Cancer contents on SNS are called autopathography and can serve as a means of self-expression, whilst at the same time stimulating communication and networking and thus significantly influencing identity and identity development in the chronic disease process (Rettberg; Ressler et al.; Abrol et al.; Stage). The possibility of recording and archiving private moments in a digital environment through photos and texts creates a visual diary. Here, illness recordings are not just motifs, but also part of an identity process by accepting the self as being ill (Nesby and Salamonsen; Tembeck). Instagram-Exclusive Positivity Instagram is the most popular social media network amongst 14-29 year olds in Germany (Beisch et al.). It presents itself as a highly visual structured platform. Furthermore, both posts and stories are dominated by content with innocuous motifs (Hu et al.). Additionally, the visual culture on Instagram is supported by integrated image optimisations such as filters and therefore often associated with high aesthetic standards (Waterloo et al.). This encourages the exchange of idealised self-presenting and self-advertising content (Lee et al.; Lup et al.; Sheldon and Bryant). The positive tone of the shared motifs and captions can also be explained by larger, sometimes anonymous networks on Instagram. The principle of non-reciprocal following of public accounts increasingly creates weak ties, which can additionally encourage the sharing of positively connoted content due to the anonymity (Lin et al.; Waterloo et al.). The posting of negative moods or image motifs to anonymous followers does not seem to be socially standardised, due to the associated intimate thoughts and feelings (Bazarova). In addition, users are aware of the public framework in which they address intimate topics and discourses (Bazarova and Choi). Internal platform standards and technical possibilities thus create a particular posting culture: an environment that is—due to its strong visual-aesthetic structure and anonymous follower-based networks—almost exclusively positive. However, these assumptions and findings are based on a general posting culture, which is usually not focussed on niche topics like cancer. Previous studies show that SNS are used for exchange and networking, especially by young cancer patients (Chou and Moskowitz; Perales et al.). Studies from online SNS disease-related self-help groups show that weak ties in illness situations are considered beneficial when it comes to self-disclosure, seeking help, and support (Wright et al.; Love et al.; Donovan et al.). In addition, Instagram is part of the so-called “vital media” (Stage et al.), which means it is very important for young cancer patients to share cancer-related material. But despite these research findings less is known about the content shared by German-speaking bloggers who have visible cancer references in their Instagram biography. Do they include a serious, even life-threatening illness on a platform that actually stands for positivity, or do they follow the invisible platform regulations in their posted content and statements and exclude it by themselves? The specific objectives of this explorative study were (a) to obtain a descriptive analysis of the manner in which cancer bloggers post content on Instagram, and (b) to determine the extent to which most applied practices exclude the posting of certain negatively connoted motives and emotions associated with cancer. Methodology For the study, 142 German-speaking cancer bloggers (14–39 years of age) with public accounts and visible cancer references in their biography were researched on Instagram. The sample was divided into posts (7,553) and stories (4,117). The content was examined using a standardised content analysis and a code book with relevant categories (motifs, body presences, emotions, captions, emojis; ICR Cronbach’s alpha = 0.85). Measured by the value of the content posted, the story users, at 23 years of age, were comparatively much younger than the post users, at 30 years of age. The sample was predominantly female in both posts (81%) and stories (99%). The most common form of cancer was breast cancer (posts: 28%; stories: 29%), followed by brain tumors (posts: 19%; stories: 16%) and leukaemia (posts: 4%; stories: 19%). Most content was shared by people who were actively involved in treatment – 46% of posts and 54% of stories. Completed treatments were more common in posts (39%) than in stories (19%). At the time of data collection, the Instagram entries were explicitly open to the public, and no registration was required. The content, not the individual, was analysed to minimise the risk for the bloggers and to prevent them from violations of privacy and autonomy by third parties. Furthermore, the entries were assigned unidentifiable numbers to ensure that no tracing is possible (Franzke et al.). Results The sample consists of public cancer blogger accounts who document everyday experiences for their network in images and videos. The following results are shown for posts (P) and stories (S). Motifs and Bodies Looking at the evaluation of the image motifs, the selfie predominates both in posts, with 20.7 per cent, and stories, with 32.8 per cent. Other popular photo motifs are pictures of food (P: 10.2%; S: 11.0%), activities (P: 7.2%; S: 7.7%), landscapes (P: 6.3%; S: 7.1%), and of/with family and friends (P: 12.5%; S: 6.0%). Photos in medical or clinical settings are rare, with one per cent in the posts and three per cent in the stories. Looking at the bodies and faces displayed, a comparatively normal to positive image of the bloggers that were studied can be observed. Most of the people in the posts present themselves with hair (81.3%), wear make-up (53.3%) and smile at the camera (64.1%). A similar trend can also be seen in the stories. Here 63.8 per cent present themselves with hair, 62.7 per cent with make-up and 55.3 per cent with happy facial expressions. In contrast, scars (P: 1.6%; S: 4.4%) or amputations (P: 0.2%; S: 0.1%) are hardly ever shown. Thus, possible therapy-accompanying symptoms, such as alopecia, ports for chemotherapy, or amputations (e.g. mastectomy in the case of breast cancer) are rarely or hardly ever made visible by cancer bloggers. Captions, Hashtags, and Emojis Similar to the motifs, everyday themes dominate in the captions of the images, such as the description of activities (P: 23.2%; S: 18.0%), food (P: 8.2%; S: 9.3%), or beauty/fashion (P: 6.2%; S: 10.2%). However, information on the current health status of the person affected can be found under every tenth photo, both in the stories and in the posts. Hashtags are mainly found amongst the posts with 81.5 per cent. In keeping with the caption, normal themes were also chosen here, divided into the categories of activities (17.7%), beauty/fashion (7.6%), food (5.8%), and family/friends (4.8%). Illness-specific hashtags (e.g. #cancer, #survivor, or #chemo) were chosen in 15.6 per cent. In addition, the cancer bloggers in this study used emojis in 74 per cent of their posts. In the stories, however, only 28.2 per cent of the content was tagged with emojis. The most common category is smileys &amp; people (P: 46.8%; S: 52.8%), followed by symbols (e.g. hearts, ribbons) (P: 21.1%; S: 26.5%), and animals &amp; nature (P: 17.0%; S: 14.2%). Emotions In captions, hashtags and emojis, emotions were divided into positive (e.g. joy, fighting spirit), neutral (e.g. simple narration of the experience), and negative (e.g. fear, anger). It is noticeable that in all three categories predominantly and significantly positive or neutral words and images were used to describe emotional states or experiences. In the case of captions, 40.4 per cent of the posts and 43.9 per cent of the stories could be classified as positive. For the hashtags, the values were 18.7 per cent (P) and 43 per cent (S), and for the emojis 60 per cent (P) and 65.7 per cent (S). In contrast, there were hardly any negative moods (captions P: 5.7%, S: 5.8%; hashtags P: 4.4%, S: 0.7%; emojis P: 8.7%, S: 6.4%). Although the disease status (e.g. active in therapy or completed) had less impact on emotional messages, a significant connection with the applied thematic areas could be observed. Thus, it is apparent that medical and/or therapeutic aspects tend to be described with positive and negative words and hashtags, e.g. the current health status (χ²(3) = 795.44, p =.000, φ = 0.346) or the topics of illness/health via hashtag (χ²(3) = 797.67, p =.000, φ = 0.361). Topics such as food (χ²(3) = 20.49, p =.000, φ = 0.056) or beauty/fashion (χ²(3) = 51.52, p =.000, φ = 0.092) are recognisably more impersonal from an emotional perspective. Discussion A Digital Identity Paradox Drugs, chemotherapy, setbacks, physical impairments, or anxiety are issues that usually accompany cancer patients during treatment and also in remission. Looking at the content posted by German-speaking cancer bloggers on Instagram, illness-related images and words are comparatively rare. The bloggers show their normal, mostly cancer-free world, in which negative and illness-related content does not seem to fit. Although they clearly draw attention to their illness through their biography, this is not or only rarely addressed. Therefore, it can be stated that cancer as a topic is excluded by choice by the bloggers examined. Neither motifs, captions, nor hashtags make the illness visible. This seems paradoxical because the content and biography appear to contradict each other. And yet, the content studied only shows what Jones et al. and Miller have already described: their identity paradox, or multiple identities. The digital acceptance of one's own illness and solidarity with (anonymous) fellow sufferers is clearly given through the disclosure in the biography, but yet a normal and healthy online ego—comparable to the peer group and equal to their own illness identity—is aspired to. It seems as if those affected have to switch their identity back and forth. The awareness that they are already different in real life (in this case, ill) encourages the users examined to show a normal, age-appropriate life—at least online, which is why we speak of an identity paradox 2.0. Based on our data, the obvious otherness of being ill—and in this context the potential higher risk of digital ostracism effects (Greer and Jewkes; Timeo et al.)—can be a reason for self-exclusion of the cancer topic, in order not to be excluded by a healthy peer. The Standard Creates the Content The positive tone that can be found in almost every second post can be explained by the platform standards and practices themselves (Waterloo et al.). Thus, smiling faces in a public environment correspond more to this than sadness, anger, or despair. Although disease-related topics in captions are also provided with negatively connoted language, they do not have a determining influence on the public self-image of the blogger and their life and the illness. The strong visual culture on Instagram does not leave much scope for "other", perhaps more authentic serious content. The fact that published content has the potential to talk about cancer and to make one’s own experience with the disease transparent is proven by blogs (Kim and Gilham). Instagram does not currently seem to be particularly suitable for public profiles to make serious illness narratives about cancer. Conclusion It remains to be noted that public cancer blogs attempt to include a serious topic on Instagram. But with regard to the data, we can see a form of (maybe unconsciously) self-chosen exclusion of illness narratives. The reasons might vary. On the one hand, cancer bloggers want to belong to a healthy peer group, and expressing a visible otherness would exclude them. Therefore, they try to reduce the higher risk potential of ostracism effects. On the other hand, internal Instagram regulations and standards create an environment which can strengthen the bloggers' posting behaviours: young people, especially, post life-affirming and life-related content. This also helps them to cope with crisis situations and to avoid being dominated by a life-threatening disease. Further research on cancer on Instagram is needed to determine to what extent this is desired, and whether an awareness of this paradox exists or develops intuitively. 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