JimmyTeens.TV: #hesawards 2013 Winner, Connecting Through Video Therapy
Pioneer: Tom DeBruin
Awarded for: Connecting Through Video Therapy
Are young people empowered enough and do they have a representative voice when it comes to speaking about and acting upon life-changing medical diagnoses? The sensitive issues surrounding young people who suffer from cancer and the pertinent question of whether or not they should be treated as adults is a well-documented dilemma within the medical community. Specialist teenage units have been conceived and created throughout the years, all with the help and input of young cancer sufferers themselves, out of eagerness to provide such patients with a better post-diagnosis experience.
The #hesawards Connecting Through Video Therapy award recognises the importance of young people from across the globe collaborating with each other through the sharing of videos about how they are coping with the disease, and it is awarded to the JimmyTeens.tv project, co-founded by Tom DeBruin.
We chatted to DeBruin about how the project got started, what difference it is making to young cancer patients’ lives, and how the organisation plans to expand to different countries.
JimmyTeens.tv began to take shape in 2005 as DeBruin, then being treated for Hodgkin’s Lymphoma in St. James Hospital in Leeds started collaborating with Mark Wilkinson and the hospital staff working within the Teenage Cancer Trust Ward.
The idea materialised when the team realised the benefits of sharing personal journeys through the medium of video, after having given young cancer patients ‘Flip’ cameras. Some of the most prominent initial video diaries were made into a video documentary called ‘To Courtney with Love’ , a story about a young mother facing a terminal illness and recording her feelings through video footage, a subsequent gift for her unborn baby. The video documentary was broadcast on UK television channel BBC1 and has been recognised for its ability to help others go through similar grieving processes.
How the Initiative Has Changed Teenager Cancer Care
Initially piloted within the Leeds region, DeBruin says that Jimmyteens.tv is now an established project well known among major cancer treatment centres throughout the UK. Teenagers usually record their videos onto the website to be edited by the Jimmyteens.tv editor, although there is also the option to make their own films, and everything is reviewed before being uploaded online. The reason for the latter, DeBruin says, is that there have been cases in the past where young people have had emotional breakdowns on camera, be it due to psychological trauma or missing out on things such as school and career seeking while their peers go on with their lives. Such cases have been advised and referred to further counselling.
“It’s a difficult thing to say to somebody with cancer… ‘do you want to make a film?’… They’re in an emotional state at the time… it’s a minefield, it can be…” says DeBruin. However, the team have noticed how important it is for young people to be able to share their stories with one another, and the resource is useful to those who don’t choose to upload videos, as it spreads a crucial message – there are other young people like them.
“Somebody might not want to make a film, but they come to the site and they see that other people are going through this as well, and a lot of the time when you’re faced with an illness like that, you feel so isolated and you feel so out of control, and seeing other people go through that situation and think ‘I’m not the only one’ is always so very beneficial to people, and we’ve seen lots of emotions being dealt with, emotions and feelings, and they think they’re the only ones having them, but once they come to the site they can see that they’re not the only ones”, says DeBruin.
JimmyTeens.tv has also launched a programme called JTV Media Learning, an initiative that helps JimmyTeens patients and ex-patients who have been taken out of education due to having to undergo treatment. DeBruin says that one of the problems teenage cancer patients often have to face is fitting back into society after long periods of treatment, especially if their peers have started looking for work or already completed their education. Recognising this concern, JTV Media Learning helps JimmyTeens patients with activities such as public speaking, video editing and writing a CV, as a way of bridging the gap between the experience their friends may have gained and their post-treatment lifestyle.
“There are some people who have been extremely introverted, not wanting to talk about what they’re going through, and they’ve been given a camera, and suddenly they’re just extremely open about things, and so it grows their confidence”, says DeBruin.
JimmyTeens: A Helpful Resource for HCPs and carers
In addition to proving a very useful resource for patients, JimmyTeens is also used by healthcare professionals, carers, or other groups of people who might have an interest in learning more about what their loved ones, patients or friends are going through post-diagnosis. Ultimately, the objective is to provide a dependable resource to groups of people whose emotional needs may have been overlooked.
In a way, JimmyTeens has moved beyond video therapy for people diagnosed with cancer to functioning as an educational resource for carers and healthcare professionals who wish to understand cancer patients better by watching their documented journey on the website.
“We get emails all the time asking whether it’s okay to use this film in this presentation to this group of doctors, or for a conference…and we usually say yes to that”, DeBruin explains.
JimmyTeens also has a professional film section that includes uploads from national cancer-related events and conferences such as the Children’s Cancer and Leukaemia Group in Birmingham.
“It’s a great medium for people to learn from…with the popularity of Youtube, and other websites. Not everyone wants to sit and read a leaflet, it might not suit them. If it does, then they’ve got those options…but doing it through video is a really friendly way, and really powerful”, explains DeBruin.
In the Future: Expansion beyond the UK
DeBruin says in the future, the organisation would like to have a more structured planning process that will allow them to develop a more commercial model, thus increasing their reach.
At the moment, they are achieving a lot with quite a small team, and DeBruin says the area they would like to do more in is providing more educational, factual videos about the cancer treatment journey to complement the material that caters to the psychological and emotional aspect of the treatment.
There are even plans to approach and collaborate with pharmaceutical companies in order to put together high-quality educational videos. The need to collaborate with pharma companies would also contribute to bridging the gap between pharma and the patient, perhaps even helping build more trust from a patient perspective, DeBruin says.
The JimmyTeens.tv team are hoping to spread their wings, but lacking the extra funding means a sustainable financial element has to be included in the planning. Has the team been averse to this route in the past? DeBruin says yes, there have been concerns about ‘selling out’ but earning money will allow the team to do bigger and better things in the future from a project management perspective.
JimmyTeens is already planning on doing work in conjunction with Canadian and Australian cancer charities and DeBruin says there has been a lot of interest from Eastern European countries, although the latter may involve more work due to the language barrier.