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Abstract:
The aim of this research is to improve understanding of the role of digital technologies in the lives of people with a brain tumour. In the UK, brain tumours account for around 3% of diagnosed cancers, and it is estimated that more than 88,000 children and adults will be currently living with a brain tumour. The complexity of the brain means that a brain tumour, and its treatment, can have a significant impact on many different brain functions and processes, leading to a high symptom burden and poor life expectancy; only 12% of adults survive more than 5 years after a brain tumour diagnosis.
Evidence shows that digital technologies (i.e. devices such as computers, mobile phones etc. that can connect to the internet, and the ever-increasing range of applications and services which can be accessed by such devices) have the potential to facilitate activities of daily living and to improve quality of life for people living with illness or disability, including a brain tumour. However the symptoms and consequences of a brain tumour diagnosis may pose barriers and challenges to the use of digital technologies. It can be hypothesised that there is a two-way relationship in which the physical, psychological, emotional or social changes that may occur as a result of living with a brain tumour can both influence, and be influenced by, the use of digital technologies. To date there has been little research on this specific topic.
This research seeks to address this gap. A mixed-method approach was adopted to collect narrative data from a sample of adult participants living with a brain tumour from two perspectives, through interviews in which participants talked about the role of digital technologies in their lives, and through a study of blogs which examined how participants presented themselves and their lives through this technological medium. The qualitative data from the interviews were complemented by a survey to collect quantitative data from a wider sample. A total of 35 participants contributed to the study.
Analysis of the findings from these studies shows that living with a brain tumour diagnosis had a range of negative implications for participants’ quality of life, independence and autonomy. The data support the two-way hypothesis, showing that digital technologies can make a positive contribution to these aspects of life, but also that living with a brain tumour can present challenges and difficulties for their use, and may in turn reinforce a sense of reduced autonomy and self-efficacy. The data also show that the use of digital technology can follow a dynamic trajectory through an individual’s brain tumour ‘journey’, with different technologies becoming more or less used or useful through different stages such as diagnosis, treatment, and adjusting to life with changing needs and capabilities.
The findings also suggest that participants discovered the benefits of digital technologies in relation to their changing needs through serendipity or trial and error, sometimes with support from others, although this was not available to all. Similarly, some but not all had access to support from others to help resolve difficulties or challenges with using technology. In turn, these findings suggest a potential role for brain tumour charities or healthcare professionals to provide tailored information and advice for people living with a brain tumour to choose, learn to use and make effective use of digital technologies that can meet their needs.
For context, the research reported here was undertaken part-time between 2015-2023. This includes the period formally defined by the World Health Organisation as the Covid-19 pandemic (2020-2023). The timeframes for each stage of the research are indicated in the relevant chapters, and where there are actual or potential implications for the research these are discussed.
School of English
Supervisors: Svenja Adolphs, Sue Cobb, David Walker
Keywords: Living with a brain tumour, use of digital technologies, medical technology, digital technology
