A great deal of progress has been made since Ben began to try to fulfil Liam’s wish that he spend some time using his skills to do something for young people with a long term illness.
If one wants to get major funding for a philanthropic project from a major sponsor it is necessary to provide them with a “proof of concept” study. This involves an initial research project to evaluate whether the idea is helpful to the target group; identifies any strengths and shortcomings; and, generally, shows the promise of a good charitable investment. Through a series of amazing co-incidences or big dollops of grace (depending on your beliefs) Auckland University chose to pick up the task. Within the university they have a research nest consisting of folk who have either just finished or completing their PhDs. The lead researcher chosen for this piece of work turned out to be the guy who used to work at Starship and was Liam’s consult/liaison when he was in and out of the hospital. He knew Liam well and had met the family.
One of the HODs of the research unit was an ex colleague of mine and asked if I would like to be involved. Needless to say, I was delighted to be on such familiar territory. Then followed the development of the methodology; the questionnaires; the choosing of the patients to be involved and the arranging of their interviews.
Five adolescents agreed to take part and chose where they wanted Ben to set up the technology, by that I mean the 360degree camera and the Virtual Reality head sets for the students. Interestingly, they all wanted to be in school where their mates were. Only one of the students had had experience with the technology, as she had trialled the set up for Ben in a senior chemistry class. The students all came from the oncology ward and ranged across ethnicities, SES, gender, living conditions etc. All were keen to get on with the experiment and had been waiting with some frustration while the ethics committee from the University gave the OK to the project.
We recorded interviews with the kids themselves and separately with their care givers (in all cases a parent). The voice recordings were then transcribed. The useful data is being mined out by a clever machine, goodness knows how, and used for the final analysis.
Meanwhile the students are hopefully using the technology. Their state of health is, of course, the most important consideration. If in hospital, there will likely be a million interruptions right through the twenty-four hours of every day, so it might not be easy. Each will be interviewed again after a few weeks in order to find out what their experience has been. The teachers will also be interviewed for their observations. Once the data has been collected again, the report will be written.
Everyone involved is very enthusiastic and keen to see the project fly. There is an enormous amount of goodwill engendered but who knows how far it will go. Ben has had enquiries from interested parties overseas and the literature search has not uncovered anywhere else in the world where such a scheme is in use. Now the idea has been floated I think it will happen eventually, but how soon is another question. We are only leaping the first hurdle, finding a major funder will be a challenge.
— Jean Martel