Supporting Wellbeing in Cancer
Wellbeing is a multidimensional construct which goes beyond measuring the absence of dysfunction, but considers both hedonic and eudaimonic conceptualisations. The hedonic view focusses on happiness and positive emotions, while the eudaimonic view focusses on a person’s engagement in meaning, and on the degree to which they are fully functioning.
Cancer and its treatment can have positive (e.g. benefit finding, posttraumatic growth) and negative (e.g. fatigue, anxiety) influences on a person’s wellbeing. Furthermore poor wellbeing in itself can also impact on engagement in self-management practices such as physical exercise (see for example [1]). The European Guide on Quality Improvement in Comprehensive Cancer Control, published in February this year, recommends a tiered model of psychological care to address these psychosocial needs and includes e-health platforms as a low level intervention method for the delivery of psychosocial support and self-management programmes. As part of CATCH, my PhD will focus on identifying suitable digital health strategies for supporting wellbeing in cancer survivors.
Getting to Grips with the Field of Human-Computer Interaction (HCI)
Since I started my PhD in Computer Science five months ago, I have been fortunate to have been able to attend a number of high quality training events, including the annual ACM CHI Conference on Human Factors in Computing Systems in Denver, CO. This conference is the largest and most highly regarded conference on Human-Computer Interaction, and therefore, for a HCI newbie like me, it was a fantastic opportunity to learn about the breadth of research taking place in HCI and make connections. I was captivated by HCI’s diverse applications from connected kettles to designing gamified applications that make safe driving more engaging, but I was particularly amazed by the amount of HCI representation in the field of healthcare.
During this conference I attended a workshop entitled “Positive Computing: Research and Practice in Wellbeing Technology” which was organised by Dr Rafael Calvo and Dorian Peters from the Positive Computing Lab, University of Sydney. In this workshop, we were shown a video by Superflux on Vimeo, entitled “Uninvited Guests”. This video shows an elderly man, frustrated with the connected technologies gifted to him by his children, such as cane to measure his steps and a connected fork to track his eating habits. Despite his children’s good intentions, this video portrays the intrusion of this technology which has not been designed with the potential user’s need for autonomy, competence and engagement in mind. These are however strong predictors of psychological wellbeing (see Ryan and Deci’s Self-Determination Theory). This video is a strong reminder of the need to consider wellbeing not only as a desired outcome of health technologies (i.e. Does this technology lead to greater wellbeing and quality of life?) but also within the design of the technology by considering a person’s experience with its interface (i.e. Does the user interface promote autonomy, engagement, competence, meaning and relatedness?), as this will impact on whether the technology will be adopted by the potential user.
Another highlight of my training to date has been the opportunity to attend the first week of the 2017 EIT Health and ACM SIGCHI Summer School on User-Centered Design of e-Health and m-Health Systems which was held in Trinity College Dublin in June, where I met a number of PhD students and post-doctoral researchers working in e-health from various backgrounds including HCI, Technology, Psychology and the Health Sciences. Through group projects and case studies we were able to work together to deepen our understanding of the user-centered design process by considering amongst other things: the use of fiction in design, applications of behavioural science to e-health and m-health, ethical design, and alternatives to randomised controlled trials for evaluating designs. A presentation which I found particularly thought-provoking during this Summer School was the Inclusive Design Methodology workshop run by Cecily Morrisson from Microsoft. In her talk and across a number of activities we explored the need to recognise exclusion, design for diversity and design for one to extend to many. As technology innovation in healthcare is expanding and becoming more visible across national health agendas, we need to ensure that we are not excluding populations such as those who have visual impairments for example, who would equally benefit from these innovations.
------------------------
When I first started my PhD in Computer Science, I was concerned that I would lose the skills and knowledge I developed in Health Psychology over the last 5 years. However in engaging in HCI training events and conferences, I am not only finding that I am learning new skills; I am also applying Health Psychology to the HCI field. I am keen to now start applying all that I have learnt in terms of designing for wellbeing in cancer. The next steps in my PhD involve continuing to review the literature on cancer care and wellbeing technology, and begin preparing for my first study which will involve interviews with cancer patients and healthcare professionals.
[1] Warner, J. T. (2008). Body composition, exercise and energy expenditure in survivors of acute lymphoblastic leukaemia. Pediatric blood & cancer, 50(S2), 456-461.