Background By the very nature of their condition, children with a rare disease, often have little, if any, personal contact with other children with the same condition. There is little evidence of what it is like for them to live with a rare disease. Whilst there is considerable literature on what factors underpin family resilience in those facing adversity, these have not been explored with children who have a rare disease and their families.
Purpose To explore happiness, fulfilment and resilience with children who have a rare disease and their families. Our aim in this presentation is to highlight the benefits and challenges of using a range of creative methods, including art and photography, to engage children in a process of capturing and storing moments of happiness.
Methods The study involved multiple methods across stages of participation: 1) Initial individual interviews to build rapport with children and understand their favourite things, 2) Creative workshop 1, involving: a show and tell activity, the creation of individual happiness maps and the decorating of personal happiness banks. Children took art materials, a camera and mini printer home to capture everyday moments of happiness and store them in their happiness bank. 3) Further individual interviews using photo-elicitation to explore what photographs children had taken and why. 4) Creative workshop 2, involved children sharing their five happiest memories and collating these on a happiness tree, describing how their bank had helped them and providing feedback about the project.
Results and conclusions Five children aged 7–11 with a rare craniofacial condition participated. All had previous experience of being in hospital. All children actively engaged with the photography element of the study and reported enjoying taking photographs and being able to print them at home. Photographs and arts based activities served as tangible prompts for discussion of more abstract concepts such as happiness, facilitating group interaction. Key challenges related to time, resources, and the practical considerations of bringing together children with physical impairment and complex health needs.
Further research is needed. We are recruiting young people aged 13–16 to assess the usefulness of a happiness book while in hospital.
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