Assignment: Beyond A Cancer Diagnosis

Assignment: Beyond A Cancer Diagnosis

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How young people describe the impact of living with and beyond a cancer diagnosis: feasibility of using social media as a research method

F. Gibson1,2, S. Hibbins1, T. Grew3, S. Morgan4, S. Pearce5, D. Stark6 and L. A. Fern5* 1London South Bank University, London, UK 2Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK 3Oxford University Clinical Academic Graduate School, Oxford, UK 4St James’s University Hospital, Leeds, UK 5University College London Hospitals NHS Foundation Trust, London, UK 6Section of Oncology and Clinical Research, Leeds Institute of Molecular Medicine, Leeds, UK

*Correspondence to: Dr Lorna Fern, NCRI Teenage and Young Adult CSG, University College London Hospital, 250 Euston Road, NW1 2PG, London. E-mail: lorna.fern@ cancer.org.uk

Received: 9 February 2015 Revised: 20 November 2015 Accepted: 6 December 2015

Abstract Objective: Young people with cancer exhibit unique needs. During a time of normal physical and psychological change, multiple disease and treatment-related symptoms cause short and long-term physical and psychosocial effects. Little is known about how young people cope with the impact of cancer and its treatment on daily routines and their strategies tomanage the challenges of cancer and treatments. We aimed to determine how young people describe these challenges through a social media site.

Methods: Using the principles of virtual ethnography and watching videos on a social media site we gathered data from young people describing their cancer experience. Qualitative content analysis was employed to analyse and interpret the narrative from longitudinal ‘video diaries’ by 18 young people equating to 156 films and 27 h and 49 min of recording. Themes were described then organized and clustered into typologies grouping commonalities across themes.

Assignment: Beyond A Cancer Diagnosis

Results: Four typologies emerged reflective of the cancer trajectory: treatment and relenting side effects, rehabilitation and getting on with life, relapse, facing more treatment and coming to terms with dying.

Conclusions: This study confirms the need for young people to strive towards normality and creat- ing a new normal, even where uncertainty prevailed. Strategies young people used to gain mastery over their illness and the types of stories they choose to tell provide the focus of the main narrative. Social Media sites can be examined as a source of data, to supplement or instead of more traditional routes of data collection known to be practically challenging with this population. Copyright © 2016 John Wiley & Sons, Ltd.

Background

A cancer diagnosis can be traumatic and life changing at any age. In young people it carries extra significance, being unexpected and accompanied by perceptions of devastating consequences on the future [1]. Anxiety about treatment, side effects, negative attitudes towards cancer and longer-term prognosis are likely to be the most imme- diate concerns [2,3]. The array of symptoms resulting from the disease and its treatment cause short-term and long-term physical and psychosocial effects that impact on daily living [2,4,5]. Cancer challenges their sense of self-esteem, leading to feelings of loss of control at a time when self-image and gaining autonomy are pivotal to nor- mal development [6]. Transition to adulthood is often disrupted where the focus is on managing normative developmental tasks at the same time as coping with the challenges of their diagnosis [7].

Assignment: Beyond A Cancer Diagnosis

As a result, relationships with family members and friends can be disrupted reducing the development of social skills, family functioning and social support so critical to life with and beyond cancer [2,8,9]. Families of young peo- ple with cancer integrate illness and treatment into everyday living by reconstructing a new ‘normal’ view of their world and how to manage it [10]. Young people also value their personal resources and peer-group social support [11,12]. It is not surprising that maintaining engagement in school, with education, employment and managing the shifting roles within the family, with partner and peers have been prioritized by young people with cancer [13] . In particular, they describe networking online as critical to their life, facilitating real-time communication and connection with peers and those in the same situation [8]. Aided by the convenience and constant access provided

by mobile devices, in particular Smartphones, 92% of young people have reported going online daily, including

Copyright © 2016 John Wiley & Sons, Ltd.

Psycho-Oncology Psycho-Oncology 25: 1317–1323 (2016) Published online 8 January 2016 in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.4061

24% who say that they are online ‘almost constantly’ [14]. Social media has become young people’s preferred mode for information gathering, communication and support [15–17]. What has been described as ‘naturally occurring’ peer support has revealed new avenues for the way, in which researchers can gather personal stories [18]. It increases our capacity to approach primary data collection in different ways, as well as access a vast and ever- growing repository of information and data that already exists [19]. This study sought to address two main issues:

1 How is a social media site for young people with can- cer being used to share illness narratives: what kinds of stories are told, and what information, in terms of practical advice, technical or supportive information about treatment, young people choose to share with others.

Assignment: Beyond A Cancer Diagnosis

2 Is it possible to collect and analyse these narratives: can this social media site provide quality data, and could it either replace or enhance other data sources known to be more practically challenging to collect from this population.

Methods

Young people report describing their cancer experience more freely using new technologies; self-filming provides the pri- vacy to explore concerns and intimate worries [20,21]. JTV Cancer Support (JTV; https://jtvcancersupport.com/) is an online community for young people with cancer. Its origins are in the UK but is now host to international films. Patients are approached around the time of their diagnosis and admis- sion to a hospital by a JTV ‘champion’ and invited to partic- ipate. They are offered a camcorder, which they keep and use to make a film about their experiences. At the time of this study, the site included over 1620 films and receives 2000– 4000 unique visits monthly. It was this rich source of natu- rally occurring ‘data’ we examined, seeking new ways to gather insights into patients’ perspectives.

Data collection

We employed the principles of virtual ethnography online, a participant–observation approach using computer-mediated communications as the data source [22]. Studying ‘at a dis- tance’ allowed us to enter more fully the world of young people through observations ‘in the field’: we learnt through immersion, supported by systematic enquiry of our observa- tions. To enhance our insights our research team included a young person with a previous cancer diagnosis, a second young person with a previous cancer diagnosis also assisted with data collection.

Participants and procedure

At the time of our study there were approximately 1620 films on the site, approximately 10 min in length, divided into a range of different genres, such as music, drama, video diaries, written stories and the spoken word: a search engine was available to search on a particular topic. We selected ‘video diaries’ for analysis because of their longitudinal nature this would allow us to follow young people telling their story over time rather than a cross sectional sample of diaries of different young people at different points in their journey. Additionally, the video diaries captured how young people used the camera in different ways, including documentary, expression through animation and music, and conversations and/or interviews with professionals. A proforma was developed by paired researchers

independently viewing two films each directly from the website (FG/TG; LF/SH). Discussion was followed by re- finement of the proforma. Two researchers independently watched each video at least twice.

Data analysis

Each video diary was analysed using qualitative content analysis [22,23]. Narrative materials were broken down into smaller units of content on the proforma to capture the essence of the patient’s narrative (coding and noting). Data analysis and interpretation proceeded in tandem. Through a process of dialogue significant statements were identified and further transformed into mind maps (abstracting and comparing). The team returned to the website to re-watch videos as required (checking and refinement). Patterns and meanings implicit within patient’s stories were explored further, mind maps were further refined and expanded: supportive salient quotes were highlighted on each mind map. Themes were identified, organized and clustered into typologies (generalising).

Ethics

Ethical standards specific to online communities were adhered to [24]. Written consent is taken prior to young people making film(s), and edited films are approved by young people before posting on JTV. All quotes are anonymized.