Young people living with an illness and, in particular, cancer are “recognised as amongst the most disadvantaged and isolated patients in the health care system... internationally”
– Davis et al., 2008, p.1

Researching the Patience Project

The Patience Project aims to promote a new form of social connectedness for young people suffering a long-term illness. Such patients speak distressingly of their sense of isolation, their lost educational opportunities and how much they miss the company of others, particularly their peers. The Patience Project’s immersive 360-degree live streaming technology enables the young person to use a VR headset and control the 360-degree field-of-vision camera positioned in an environment of their choice. 

To test the strengths and weaknesses of the project, a formative assessment of young people in this situation (aged 12-18 years), was undertaken by the Centre for Community Research and Evaluation (CCRE), at the University of Auckland. The participants were recruited through Starship Children’s Hospital, Auckland and included the students (all cancer patients), their parent or caregiver and the teachers involved. The students all chose a classroom setting for the trial. Each participant was interviewed beforehand to determine their expectations and afterwards to assess the experience. 

The students regarded the technical equipment as “very cool”, the VR headset was particularly appealing and exciting. The teachers found the camera unobtrusive and created no difficulties or issues in the classroom. Students were very enthusiastic about the potential to reconnect with their peers and their teachers were delighted to help the students overcome their sense of exclusion and isolation. The camera became the embodiment of that student returning to the class, renewing friendships and contacts after a long absence. It seems the benefits of the technology extended to the student’s peers, who had the opportunity not only to re-connect with the absent student, but also to confront and discuss illness, life and death with their teachers.

 

The technology’s unique capacity to help young people move in and out of the reality of illness was warmly welcomed by them and their families. Students could transport themselves from their sick beds into the safe, familiar, environment of their classroom and be fully involved in another world where there was purpose and laughter. Both students and parents noted how “cheered up” the students had been during the immersion. The technology also gave the student a protected immersion experience because they could see but not be seen; an important consideration given the disfigurements caused by some treatments.

 

The project gave the students some semblance of control in their lives. They could use the technology when and as they chose, suspending immersion during times of high dose treatments and critical health. Students noted the experience helped them re-assess their priorities and set new goals appropriate to their situation. Connecting to school created an environment of hope for the future and compensated them for some of the losses they experienced.

 

A number of challenges were identified. Some students found the VR made them a little dizzy, so they used their laptops instead. All realised that it would be difficult to “be present” when their friends were having fun in social gatherings they could not attend. However, overall, they felt the advantages of the technology far outweighed the negative aspects. 

 

The students, the caregivers and the teachers were unanimous in enthusiastically embracing the Patience Project. They considered it a privilege to have taken part in the research and clearly stated they wanted “more of the same”, and to extend the opportunity to many more young people early in their treatment. They offered good ideas for improving the implementation and suggested several alternative placements where the technology could be used to help other groups of students.

 

Through its innovative use of technology, the Patience Project offers young people with a long-term illness a chance to re-engage with the world in ways that are potentially profound. This study clearly indicates that patients given this opportunity will benefit not only educationally, but psychologically and socially. The Patience Project provides a therapeutic intervention for this courageous population, so disadvantaged by the limitations of their illness.

The full CCRE paper is available here: