"Not coming in cold": “Not coming in cold”: Immersive reality experiences (IRE) for improving the wellbeing of young people in hospital

Abstract

EXECUTIVE SUMMARY “Because honestly, I’d do anything to make her smile, and that day this made her smile.”

The Patience Project is aimed at promoting social connectedness for young people (aged 12-18 years) who experience a health condition that prevents them from participating in their usual social and/or educational environment. The Patience Project aims to bridge the gap from exclusion to inclusion for young people, using head-mounted displays (HMD), often referred to as VR (Virtual Reality) Headsets, to live stream video images from a social or educational environment of the young person’s choice.

A formative assessment was conducted in 2017 with 15 participants (Fouché, Agee, Thompson & Chubb, 2018) aimed at developing an understanding of the perceived strengths and weaknesses of the project, to inform future directions. Insights informed the next stage in the development of the project. A proof of concept study was implemented with a greater number of participants from 2019 to 2020, incorporating both qualitative and quantitative measures over a longer period of use. Semi-structured interview data were collected from 16 participants (young people, parents and teachers involved in the Patience Project). This report is dedicated to the qualitative findings from this study.

Four major themes emerged from the data including: Support for connectedness; Connecting vs connection; Setting it up and getting it right; and Choice and connection. Participants in this stage of the Patience Project expressed positive experiences and communicated their desire for the opportunity’s continued availability for other children facing similar health challenges. For some young people, the social connectedness experienced was superficial though the project offered moments of interrupted isolation. Whereas for other young people, the project worked exceptionally well; when it did it means all of the dependent factors functioned in cohesion.

Key reflections from participating groups (i.e., parents, young people, and their teachers) are summarised here that evidence the strengths of the experience cultivated through the Patience Project and how it can continue to be improved in its future iterations.

Young people’s reflections • Young people were overwhelmingly positive about the experience • They reported that the technology was easy to use and that it offers an exciting opportunity that add joy to the day when they are home or hospital-bound. • Where connecting does not lead to connection, young people reported a potential for heightened feelings of isolation. • They identified three considerations to mitigate this potential for isolation: o An enthusiastic, communicative buddy to increase the possibility for a sense of connection o Two-way interactive capacities creating a ‘connection system’. o Fostering a bond with the teacher who makes an effort to support virtual engagement • Nausea was a common side effect if the headset was worn for too long, as was the feeling of tightness around the forehead. Nonetheless, they were thrilled to have the opportunity of their very own ‘arcade experience’ in their own homes when they chose to use it. • Laptops and phones were the devices of choice for all the young people. • Enhancing the interactive capacity (especially with regards to mobility and communication options) was young people’s primary concern for improving the Patience Project experience in the future.

Parent’s reflections • Parents expressed an overall positive response to their child’s experience in the Patience Project and as effective in interrupting isolation. • Only one parent described the experience as having educational potential, but all considered the project as important for breaking up the monotony of the days. This was especially true when the young person was having treatment or feeling unwell. • A clear distinction was made between connecting to the classroom and feeling a sense of social connectedness. Parents noted the former did not necessarily incite the latter. • Parents expressed gratitude to the ‘project custodian’ for her management and holding of project processes, but more importantly, the empathy and care she put into each interaction with their families.

Teacher’s reflections • Teachers shared their (as well as their colleagues’) widespread support for the Patience Project and stated that they would happily be involved again. • They considered the programme as potentially supporting educational enhancement but this was not communicated as a key goal of the programme. • Only one of the participating teachers noted the technology as an extra burden but only to the extent that there wasn’t proper storage space. • The project simulated a true class environment where interactions are typically limited to one peer or a small group. • In classrooms where technology was already in use, many of the teachers felt that the Patience Project camera added to the digital environment. • In the context of COVID-10 lockdowns, where all young people are learning virtually, the camera in the classroom was regarded as having the potential to offer formalised learning into the safety of individual households.

All participants shared the need to get it fully right from the initial set up, otherwise, it may become ‘a bridge too far’. A young person’s ability to engage could hinging on two important factors: • The technology must work well - every time. • The connection must be easily integrated into the daily routines of all parties.