Getting ethnographic with Bubble Wrap Boy
Ethnographic research aims to observe people in their natural settings, to gain insight into how they manage their daily lives, what they value and which factors adversely affect their ability to live their lives as they wish.
The current issue of The Journal of Haemophilia Practice has an article by several UK nurses on the HaemophiliaLIVE project. This was a Novo Nordisk sponsored project in which the nurses used a novel video-based methodology to capture the real-life experience of 16 families living with haemophilia. It sought to capture the patient-level experience that is generally missed in scientific studies.
Over the past couple of years Haemnet has also been capturing patient level experience. Two years ago we ran a patient focus group with Lara Oyesiku in Oxford in which we explored the potential for developing apps to teach young children how to manage their Haemophilia. After a highly interactive meeting with a fun group of kids Lara asked for our help in applying for grant funding to the Roald Dahl Marvellous Children’s Charity to run further meetings with more of an educational focus.
Roald Dahl grant proposals need to show innovation. In devising our proposal, we were keen to do something that would spread learning to those teenagers who wouldn’t be at the meeting through using social media, such as sixvibe.com, our secure social network for teenagers with haemophilia, as well as Facebook, Instagram and Twitter. Fortunately the charity liked the proposal.
Last February we ran an information gathering meeting, along with Lee and his crew from Create Film Productions, with whom we’ve worked at HNA meetings. Lara brought along a dozen of her patients – boys and girls – and led the first discussion session addressing a range of issues. Once the kids were chatting freely, we got them to interview each other on film and to tell stories about their lives and how they were affected by haemophilia. We encouraged them to explore some of the common misperceptions, and their consequences.
After the meeting, we had the interview sessions transcribed and passed them on to Lee’s scriptwriter colleague Daley James Francis. Taking those words and ideas he worked his magic and turned them into the tale of Jake a boy with haemophilia who starts a new school, where he makes friends and has to deal with an overprotective teacher who thinks she knows about something she can’t even spell.
A few Saturdays later, Lee and his film crew had transformed a seminar room at the John Radcliffe Hospital into a classroom. Lee had recruited some professional actors for the lead roles; Lara and her team supplied the extras and snacks. After eight hours Bubble Wrap Boy was in the can, subject to editing.
The film is in three parts. The first is now available at
As we release each part of the film, there will be supporting blogs, tweets, pictures and comic books, each reinforcing the key messages: that haemophilia is nothing to be afraid of, and that with appropriate treatment people with haemophilia can live normal lives.
Ideally we’d like to film the further adventures of Jake, Chloe and Paul. Lee and Daley have already developed hilarious scripts around PE lessons, dating, science class, careers advice sessions, and the school film club!
We hope to make them and get them “out there” soon. But for now, please look at the first instalment and share it with everyone you know. Then we may start to overcome some of the misunderstandings about haemophilia.