Around 9,000 people are diagnosed with a brain tumour each year in the UK, and at any one time it is estimated that there are about 55,000 people living with this condition (Cancer Research UK, n.d.). Research shows the positive impact that digital technologies can have in improving the quality of life of people with a range of disabilities and illnesses including cancer (Groen et al., 2015). Unlike other forms of cancer, having a brain tumour (and sometimes the treatment for the tumour) can lead to motor and cognitive impairments that can directly affect communication, social interaction, and the ability to interact with digital devices. However there is little reported research which specifically addresses the challenges and benefits that people with a brain tumour experience in interacting with digital technologies, or the associated implications for their identity, autonomy and quality of life.
The aim of this research is to begin to address this gap in knowledge and thereby to help with reducing the harmful impacts of this disease. The research is taking a multidisciplinary perspective on the topic, exploring the relationship between the experience of living with a brain tumour and the use of digital communication technologies through three different disciplinary lenses: health, linguistics, and human factors.
Following an initial review of the literature, a scoping study was carried out involving a small number of in-depth interviews with people living with a brain tumour, and engagement with around 30 people in three local brain tumour support groups. The findings from the first stage of the research suggest that there are two broad categories for the role of digital technologies:
• communicating for information and support - receiving support from others, expressing emotions (e.g. Whatsapp groups, blogs, using email for difficult emotions, chats and forums), and passing experiences on for benefit of others; • supporting independence and adjustment (e.g. using apps for travel and transport, using speech input/output instead of text, etc.)
The data show that while digital technologies can help people to live with some of the physical, psychological and social impacts that a brain tumour can have on their lives, these impacts in turn can also sometimes limit their ability or motivation to engage with and use digital technologies. Furthermore, the evidence points to the fact that living with a brain tumour is a dynamic situation, that can be characterised by temporary, acute or chronic limitations which in turn have implications for the role and use of digital technologies.
In the current stage of the research, these findings are being explored with a larger sample of participants through a questionnaire-based survey and additional in-depth interviews. A final study will be a linguistic analysis of a sample of material from an online source (blogs and comments on blogs) which will focus on the theme of ‘transitions’.
This author is supported by the Horizon Centre for Doctoral Training at the University of Nottingham (RCUK Grant No. EP/L015463/1) and The Brain Tumour Charity.