Mental Health Matters: Rising to the Challenge

In this blog post I will discuss my personal research interests and how these link to the Digital Civics agenda and HCI more generally. I will go on to explain how the readings I have found over the course of the module have confirmed my initial interests and how I see these as congruent with the Digital Civics philosophy (involving the community in the design, deployment and evaluation of digital technologies and services). Finally, I will explain the challenges and obstacles I envisage encountering during my research with such a vulnerable community in an area that is under-resourced and lacking in funding.

Mental Health Matters 

I am particularly interested in mental health challenges and how we can help those facing them through the medium of technology. Having worked and studied in the disciplines of Psychology and Sociology in the past, I have become interested in the interaction of biology and biography and the impact this has on somebody’s mental health. 1 in 4 adults in the UK suffer from some form of mental illness during their lifetime, and the stresses of modern life are causing this alarming statistic to rise. This has prompted practitioners and academics to work towards developing technologies and systems that support those with mental health issues. The ubiquity of computing means that this is an avenue worth pursuing.

Is the Future Digital? Mental Health and HCI 

Computing in mental health is a growing area of interest for academics, designers and developers. The pervasiveness of technology in the western world means that digital services can reach a higher number of people than ever before. Such is the prevalence of mental illness that huge corporations such as Google, IBM and Apple are researching how best to treat it. Google have employed Tom Insel, previously Head of the US National Institute of Mental Health. Google Life Sciences want to look at how technology can help diagnose and treat mental illness.

 

Tom Inself; former Head of US Institute of Mental Health, now working at Google
Tom Insel; former Head of US Institute of Mental Health, now working at Google

 

Of course, there exists a number of people already exploring this: academics, research bodies, and those who have suffered themselves. Whilst it is fantastic that the stigma is decreasing in relation to mental health, there is still a lot to be done. We are only just beginning to realise the potential of what technology can do to help those who need it, and not everyone is convinced. This is undoubtedly due to the challenges that lie ahead…

There are three lots of challenges currently facing the HCI field in relation to mental health:

  • Designing wearables in order to elicit behavioural signals, with a view to improve diagnosis, management and prevention of mental health issues
  • Creating online communities to facilitate support for those facing similar mental health issues
  • Designing to foster positive mental health and wellbeing; developing factors like mindfulness and gratitude

Although the pervasiveness of technology means that it is easier to assess how successful digital services are in supporting those with mental illness, there is still much to be done in this field. It is imperative that we draw upon a variety of disciplines and harness that expertise to ensure that we are designing systems that promote positive wellbeing for everyone – not just patients, but clinicians and therapists, too.

Self Harmony and Seeking Solace in Technology 

Though I am interested in a multitude of mental health issues, I am particularly keen to explore self harm. It is thought that around 13% of young people self-harm, though it is speculated that this figure in reality is much higher. Self-harm is also becoming more and more common; in 2014 published figures suggested a 70% increase in 10-14 year olds attending A&E for self-harm related reasons in comparison to the two years prior. And, interestingly, according to the Health and Social Care Information Centre (HSCIC), the North East has nearly triple the self harm related hospital admissions compared to London (2013).

Myself and Sophie Buckle are organising a hackathon here in Newcastle for later on this semester.

The event, Self Harmony (website coming soon!), has a threefold mission:

  • Providing support and emotional coping for those who self harm, and their loved ones
  • Raising awareness of self harm and calling for destigmatisation of the term and practice
  • Attempting to minimise and reduce self harm when someone is self-injuring
Coming, April 2006...
Coming, April 2016…

 

These themes lend themselves to the wider issues regarding mental health that I wish to address during my MRes and PhD. I have chosen three areas of HCI that I feel are relevant to my interests in mental health and will be useful in thinking about how to go about designing in this area. I will take each one of these in turn (Personal Tracking, Ambiguity and Research through Design) and discuss the challenges I feel I will face within each design space.

So let’s look at the 3 big contenders for my favourite HCI research methodology/process…

Personal Tracking and the Quantified Self

Rooksby et al [7] discuss personal tracking and how it is adopted by different groups of users in their study. They say that the users of personal tracking technologies have an element of agency, and that individuals use and interpret these technologies in idiosyncratic ways. According to the authors, people use technology because they want to change their behaviour, and do not change their behaviour as a result of technology. In this way it’s seen as a self imposed intervention for behavioural change. Although I like the idea that technology users have a certain degree of agency and ‘choose, use, interweave and abandon’ technologies in their own way, I would argue that these behaviours are more a result of social determinism than not. That said, I enjoy the idea that behaviour is simultaneously shaped by, and shaping technology (see this quick Bourdieu video (I will work him into my MRes work if it’s the last thing I do…)) for some more interplay of free will and determinism stuff).

On reading about Personal Informatics, I was struck by how pertinent it was for application in the area of mental health, and sure enough I found ‘Towards Smart Phone Based Monitoring of Bipolar Disorder’ [4]. The study was conducted in rural Austria with 10 patients under the supervision of a psychiatric hospital. The authors explain that as the symptoms of many mental diseases are behavioural, behaviours need to be quantified in order to obtain a diagnosis. The behaviours measured for diagnosis and episode prediction were movement, amount of time spent outside, and number and duration of phone calls. The study (though small) was deemed successful in that the measurements acquired through the smart phone were backed up by the psychological tests and the self-assessments by patients.

I feel that mental health is a particularly important application area for personal tracking. Often the symptoms of mental diseases are quantifiable (sleep patterns, eating changes etc) but are not reported by the patients in the information they give clinicians. This is especially important given that when an individual is facing mental health challenges, they are often less able to accurately report their own behaviours. I think that personal tracking for mental health episode prediction and diagnosis, when used in conjunction with more traditional psychiatric methods of management, has the potential to be very effective.

But, as with all technological ‘solutions’, personal tracking is not without its problems. So let’s look at the pros and cons:

  • Pros – Many of these mental health tracking apps allow measurement to be turned on or off so that patients can feel in control
  • There are several ways to do it, meaning it is easier for users – physical devices/apps/exergames
  • Positive, as empowers people to take care of their own health (particularly important for people with mental health issues)
  • Challenges – Temporalities of tracking – not all users are consistent in their tracking, people switch between trackers
  • Reliance on self-reporting – validity of data is questionable
  • Tracking of symptoms can serve to remind user of mental illness, foregrounding the illness and minimising the experiential
7 Cups of Tea - Online Therapy App
7 Cups of Tea – Online Therapy App

 

Ambiguity

 Sengers & Gaver [8] discuss the idea that HCI lends itself to developing systems that convey one single interpretation of how they should be experienced. In the past, HCI and its disparate areas have often taken an approach that centres around a problem and solution. This raises the question of whose interpretation should be privileged. Should it be that of the designer or the user?

I feel that the paper was extremely insightful for somebody like myself who comes from a qualitative background. My research has focussed upon eliciting rich, complex data from individuals with subjective experiences. Though this has never involved designing systems for other people, I feel that moving forward (and bearing in mind my MRes project), it would be useful to consider how ‘interpretation at all levels is strongly dependent on context…and users’ social and cultural situations’.

Perhaps part of the reason I feel persuaded by the notion that multiple interpretations of a system can be useful, is the way in which the authors illustrate their argument with concrete examples. The Key Table not only served the function of acting as a repository for the keys of a given household, but also produced a ‘pet’ (!) through the anthropomorphised frame which swung proportionally to the force of the object on the table. The participants who volunteered to have the table in their house were able to use the system for a functional purpose, but also project their own meanings onto the system, thus creating a personal connection with it.

I found that the idea of allowing for personal interpretations evoked a very ‘Bourdieusian’ (see above!) feel. I agree with the notion that ‘systems reflect their designers’ subconscious concerns’ and that these ‘unintentionally shape user experience’, just in the way that an individual’s habitus would shape, and be shaped by, their interaction with a system or technology.

Looking toward my own research into mental health and self harm specifically, I feel that staying open to interpretation and designing a system with implications for multiple meanings is extremely pertinent. Whether as an output of Self Harmony, or as part of my MRes project itself, I want to create something that means something to those experiencing mental health challenges. As mental health is such a personal and idiosyncratic issue and is intertwined with a person’s biology, biography and life trajectory (and regressing further, their interpretations of these factors), it makes sense that designing a system for this population should account for eliciting personal and idiosyncratic interpretations. This is something Anja Thieme (alumni of Open Lab!) discusses in this [11] paper. The discrepancy that results from individuals’ opinions of what counts as pleasurable and conducive to wellbeing means that ambiguity of design is often the answer. Ultimately, whether somebody connects with a system and uses it to fulfill emotional needs is down to their interpretation of it.

So what’s the damage with ambiguity as a concept?

  1. The fact that the system is left ambiguous and open to interpretation means that often it is hard to quantify the success of it.
  2. How do we design for a ‘community’ that is in fact many different communities? Yes, those with mental illness have one assumed shared need, but there are more differences than similarities. How are these accounted for?
  3. If ambiguity is an attribute of an individual’s interpretation of something, and not an attribute of a thing, then why am I even worrying about this?

Research through Design 

Gaver et al [3] designed and deployed The Prayer Companion, a device that was developed in order to aid the spiritual activity of a group of nuns in a UK northern city. The design team adopted a research through design approach, attempting to balance the specificity and openness of design, and also the materiality and spirituality of the device. A lot of paradoxes! The authors denounce the assumption in HCI that practitioners are the ‘powerful champions of feeble users’ and value and appreciate the opinions and beliefs of the nuns at every stage in the design process. As a RtD process, they intended for the openness of the system to facilitate the nuanced ways in which the nuns would give meaning to the device.

The Prayer Companion displays a continuous stream of information sourced from RSS news feeds and social networking sites to act as a potential prompt for prayer topics. This device intersected with the notion of how nuns were affected by the outside world and community (they were only able to leave the monastery to see the doctor) and also how their activities and prayers may have affected others in the community. It was also felt that the device, drawing on international sources, might eliminate media bias and provide a rather balanced voice for the nuns to listen to.

 

The Prayer Companion
The Prayer Companion

 

A year after the Prayer Companion had been deployed, the nuns in the convent were still happy and impressed with ‘Goldie’. Though the participants did not feel that they could comment upon its longevity until years had passed, its presence was welcomed. Mother Abbess notably commented upon the immediacy granted by the PC. Two people had been killed in a stampede in Africa, and seeing this on the device on her way to mass, she was able to prayer for ‘their souls’ straight away.

For me, RtD as a concept is particularly attractive as it deals not just with design, but more importantly, knowledge. The design process is important in that it forges a path to work with, and learn about, a specific community (in this case, the nuns). The designers had to be reflexive upon their own positions and inherent assumptions, and also work with a group of people with very specific spiritual and religious needs that they were not necessarily familiar with. I particularly enjoy the way that the designers see the nuns, not just as a group of elderly females, but also acknowledge their agency and the specificities and differences within that group. Although this group of participants were (or mostly) in their 80s, that is not the only way in which they were similar. Rather than designing for an ageing population, we should be designing for many different ageing populations.

This rings true for all populations we work with as part of our Digital Civics agenda. As well as designing for those with mental illness, I want to learn about them as people, build rapports, be helpful (even if it is helping one person at a time), and learn from each design process.

What’s the catch with RtD?

  • How do we manage the paradoxes of designing for such a multitude of people?
  • Is it ever possible to be completely reflexive in research? If I am working with a group as vulnerable as those with mental illness, will I be able to put aside my own preconceptions? Or should I embrace these, as long as I am transparent about them?

And Back to the Future…

Looking towards the future, it is exciting to see that more and more people are opening up about mental health and eschewing the stigma. In my own research, I can see that the field of HCI holds some challenges for me, but this permeates academic research generally.

The take home point of this blog post is that it is fundamental for me to recognise the challenges that digital civics research engenders, and begin to think about the challenges specific to my research in mental health and self harm. Despite the challenges of Personal Informatics, Ambiguity and Research Through Design, they all facilitate designing something with nuances and idiosyncrasies: the mainstay of my work in mental health. Whatever the outputs of Self Harmony and my MRes work, I feel that my (modest) grounding in HCI will help me to deal with the inevitable obstacles…

References

  1.  Doyle, J., O’Mullane, B., McGee, S. and Knapp, R. B. YourWellness: Designing an Application to Support Positive Emotional Wellbeing in Older Adults. Proc. BCS HCI 2012 (2012), 221 – 226.
  2.  Gaver, W. W., Beaver, J. and Benford, S. Ambiguity as a Resource for Design. Proc. CHI 2003, (2003), 233 – 238.
  3.  Gaver, W., Blythe, M., Boucher, A., Jarvis, N., Bowers, J. and Wright, P. The Prayer Companion: Openness and Specificity, Materiality and Spirituality. Proc. CHI 2010, 2055 – 2064.
  4. Grunerbl, Oleksy, Bahle, Haring, Wepner, Luckowicz. Towards Smart Phone Based Monitoring of Bipolar Disorder. mHealth Sys ’12 (2012), 3.
  5.  Lindsay, S. Jackson, D., Ladha, C., Ladha, K., Brittain, K. and Olivier, P. Empathy, Participatory Design and People with Dementia. Proc. CHI ’12 (2012), 521 – 530.
  6.  Moncur, W. The Emotional Wellbeing of Researchers: Considerations for Practice. Proc. CHI 2013 (2013), 1883 – 1890.
  7.  Prasad, V. and Owens, D. Using the Internet as a Source of Self-Help for People who Self-Harm. Psychiatric Bulletin (2001), 25, 222 – 225.
  8. Rooksby, J., Rost, M., Morrison, A. and Chalmers, M. Personal Tracking as Lived Informatics. Proc. CHI 2014, (2014), 1163 – 1172.
  9. Sengers, P. and Gaver, B. Staying Open to Interpretation: Engaging Multiple Meanings in Design and Evaluation. DIS 2006 (2006), 99 – 108.
  10.  Slovak, P. and Fitzpatrick, G. Teaching and Developing Social and Emotional Skills with Technology. Computer Human Interaction, (2015). 22 (4).
  11. Thieme, A., Wallace, J., Meyer, T. D. and Olivier, P. Designing for Mental Wellbeing: Towards a More Holistic Approach in the Treatment and Prevention of Mental Illness. British HCI 2015 (2015), 1 – 10.
  12.  Vines, J., Clarke, R., Wright, P., McCarthy, J. and Olivier, P. Configuring Participation: On How We Involve People In Design. Proc CHI 2013, (2013), 429 – 438.
  13. Waldron, V. R., Lavitt, M. and Kelley, D. The Nature and Prevention of Harm in Technology-Mediated Self-Help Settings: Three Exemplars, Journal of Technology in Human Services, (2000), 17 (2-3), 267-293.
  14.  Warm, A., Murray, C. and Fox, J. Why do people self harm? Psychology, Health & Medicine (2003), 8 (1), 72 – 79.
  15.  Whitlock, J. L., Powers, J. L. and Eckenrode, J. The Virtual Cutting Edge: The Internet and Adolescent Self- Injury. Developmental Psychology, (2006), 42 (3), 1 -11.
  16.  Wright, P. and McCarthy, J. The Politics and Aesthetics of Participatory HCI. Interactions, (2015), 22 (6), 26 – 31.

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