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.). As with any cancer diagnosis, those affected by the disease are faced with a new reality that is likely to have impacts on all aspects of their lives, not only on their physical health but also on their psychological and emotional wellbeing, cognitive functioning, social relationships, and education or employment. The Brain Tumour Charity (partners in this PhD) have recently launched a five year strategic plan in which they commit to achieving significant improvement in life expectancy for people with brain tumours and to reducing the harmful impacts on quality of life.
There is a growing body of research that 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). For example, online communities of patients and families can empower those affected, providing a platform for sharing experiences and giving and receiving advice and information. However 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. As yet there has been little research to understand the specific challenges faced by those with brain tumours as users of digital technologies or to identify the potential solutions that digital technologies offer to help alleviate or overcome the broader range of challenges that they might face. The aim of this research is to begin to address this gap in knowledge and thereby to help to inform the strategies and plans of the Brain Tumour Charity and other stakeholders concerned with reducing the harmful impacts of this disease.
The research is taking a multidisciplinary perspective on the topic. The chosen focus for study is ‘digital identity’, which is being explored through three different disciplinary lenses: health, linguistics, and human factors.
Each of the contributing domains provides both an existing knowledge base and methodological approaches that are informing the research. The questions being explored include:
The first stage of the study has involved a broad review of the literature around these questions, and a scoping study which collected primary data from people living with a brain tumour, complemented by secondary analysis of the primary data collected for the study on the effects of a brain tumour on quality of life undertaken on behalf of the Brain Tumour Charity (2015), which the Charity made available to me. The literature review included not only academic journal papers and books but also a number of books and blogs written by people who have been affected by a brain tumour. The scoping study including three in-depth interviews with people affected by a brain tumour and discussion of the research themes and questions with around 20 people, affected either directly or as carers, participating in local brain tumour support group meetings. The notes from the scoping study were transcribed and thematically analysed.
The findings from this stage show that having a brain tumour can have a negative impact on communicative ability, and an impact on communicative behaviours. Effects on ability for example including aphasias, effects on speech and reading, apraxia, or cerebellar mutism. Examples reported by participants in the scoping study included problems such as struggling to find the right word, needing time to formulate thoughts before expressing them, and struggling to process written information/read long documents. Specifically in relation to using digital technologies for communication, other effects mentioned included having difficulties typing on a phone keyboard to write text messages (keys too small/fiddly) and not being able to write (or read) text on a mobile phone while walking.
The study provides evidence for the impact of a brain tumour on communicative behaviours, e.g. who is communicated with, the channels or media used for communication, and the content or kind of communication. Changes in communicative behaviour are not necessarily related to changes in functional communicative ability, and are not necessarily viewed as negative. Examples of changes in who is communicated with include more communication with health professionals related to diagnosis, treatment and support, and changes in social communication networks (e.g. because of having to give up work, relying more on family members and close friends for practical and emotional support, withdrawing from some social contacts because communication is practically or emotionally challenging, or reaching out to communicate with other people also affected by a brain tumour).
In relation to the use of digital communication channels, there is some evidence that having a brain tumour can cause a shift either towards or away from using technology. In some cases a preference was expressed for written over voice communication e.g. from professionals and even from family members, in the form of texts or emails. The reasons given for this were partly because it is asynchronous, so a communication does not have to be processed or responded to straight away. In a medical context, having a written record of a discussion allows the patient time to process it away from the immediate (often stressful) context of a consultation. The asynchronicity also gives the communicator time to formulate their communication which can help when cognitive processes are affected, and also using technology for communication instead of a face to face discussion can be preferred when dealing with issues which are emotionally sensitive, so that this channel was sometimes chosen even with close family members in the same house. The study has also found many examples of online blogs and books written by people living with a brain tumour about their experiences which suggest that written communication to an anonymous audience provide an opportunity for expressing thoughts and feelings that are difficult to express in more personal communication situations.
Conversely, in some cases preference was expressed for voice over text because of difficulties with typing, spelling words or reading, resulting from the brain tumour. For some people, where there had been a recent diagnosis or deterioration in a person’s state of health, the participant’s carers indicated that the person had ‘just given up’ and lost interest in using their mobile phone completely. In other cases (for example Sclavi, 2017) there was a positive search for technological solutions to the communication challenges that the brain tumour was creating.
The experience of having a brain tumour is a condition which changes over time, from the initial symptoms, through diagnosis, treatment and outcomes. Evidence from the scoping study suggests that there may be different communicative priorities and different abilities at different stages of the illness. Digital communication technology seems to offer flexibility that can be useful in this dynamic context. For example, one interview respondent said how they appreciated the fact that they received very short text messages from family and friends when in hospital after surgery, (e.g. “Thinking of you”, “Love you”) which gave emotional comfort without the need for a response. Another explained how their mobile phone had to be handed to them by nurses (due to mobility and movement limitations), and appreciated having voice messages because their eyesight had deteriorated so much that texts could not be read. Other reported examples are sending ‘emojis’ or images as a short, non-verbal but effective way of communicating mood or state. Demjen (2016) reports that a leading contributor to a humorous online forum for cancer patients stopped contributing when she got better, explaining that participating in the forum had served its purpose while she was ill. One blogger about his brain tumour experiences explained in a blog that he tends to stop blogging when things are going well – because his audience expressed concerns that when there were no blogs this was potentially bad news.
The next stage will be the main data collection phase of the study. This will involve a quantitative survey to explore the impact of having a brain tumour on communicative ability, communicative behaviours, and the role of digital communications technologies, with a wide range of participants. This will be complemented by a further in-depth qualitative study with a sample of participants which will explore the relationship between communication, digital technologies, identity and quality of life.
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.