Imagine for a moment that you are 15 years old, your parents are divorced and you live with your father who is a recovering alcoholic. You and your father are trying your best. You are preparing for your GCSEs at school and, despite a challenging start to life, you are starting to thrive. And then one day, in the heat of a trivial argument that escalated, your dad suddenly shouts out that he has liver cancer and has just six months left to live. Just consider what kind of impact you think this might have on your 15-year old self?
This story, and many more like it, are the raw materials that inspired us to build Apart of Me, a game to support young people when someone they love has a terminal illness. I was working at St Joseph's Hospice in Hackney as a Child Psychotherapist, supporting children, young people and their families, when someone in their family had a life-limiting illness. My job was to help people have these incredibly difficult, painful conversations about the illness and the impending death. I became acutely aware that the people I was working with were just a tiny fraction of the numbers of young people around the world going through something like this without the means or support to process these difficult feelings. I kept seeing how young people, when they didn't have an outlet at that time, would repeatedly go off the rails, being excluded from school, turning to drink and drugs, developing mental health problems. But I also noticed that the young people who were able to come and see me were already using their digital devices in unstructured ways to curate memories of their loved ones who were dying. I always remember one young person flicking through (on his badly cracked screen) pictures of him and his friends drinking in the park, pictures of him kissing a girl, until he eventually got to the pictures he really wanted to show me, of him in hospital with his dying but smiling mum.
I teamed up with Ben Page, a software developer in the financial industry who was looking for a way to use his technical abilities to have a genuine social impact. We founded Bounce Works, a social enterprise that specialises in designing digital products which genuinely help improve the emotional wellbeing of children and parents, and which children and parents actually want to use. Earlier this year we were awarded funding from Nominet Trust to develop Apart of Me.
Children in the UK lose a parent every 22 minutes. And each year, 1.5M people in the UK are diagnosed with a terminal illness. With improved treatment, the prognosis is prolonged, as is the time the child must deal with it. Ongoing cuts to child counselling services are limiting available Mental Health support. And in lower socio-economic areas, children are statistically less likely to engage in traditional counselling. On top of this strain on resources, taboos around death and dying leave many children without honest, appropriate conversations. The more we have sought to protect ourselves from the inescapable reality of death (e.g. by improvements in Western medicine and living longer), the more fear we feel when confronted with the presence of death.
All of these facts underpin the real need for Apart of Me to support people to come to terms with the reality of death in a way that contains hope. We don't expect this to ever be a substitute for real human interaction. Instead, Apart of Me is being designed as a facilitator of these difficult conversations, as a place where young people can curate their digital memories of their loved ones, and as a safe space where they can have their emotions met and learn from other young people's experiences of this most challenging time.
The broader mission of Bounce Works is to overcome the growing tide of mental health problems for children and young people, supporting new generations of emotionally resilient human beings through the power of user-centered design and digital technology.
Amongst projects that we are working on are a mindfulness app for children with complex trauma, and a connected toy to build emotional resilience in families.
The main message of Apart of Me is that, despite all the darkness and the horrendous loss these young people are facing, it is possible to see the terminal illness of a loved one as something they can grow and learn from. We are due to launch the game in April 2017, and we are currently looking for people who have or are experiencing the terminal illness of a loved one, and who would like to join our user-group to contribute to the development of this game.
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