Background and aims Chronic illness can require children to have complex treatments/interventions; these can affect their everyday lives. Traditionally, studies have focused on proxy-based, quantitative measures of impact on older children/adolescents. Few studies have used participatory methods with children across illness types and cultures.
This study explored children’s understandings of their illness, the meanings they make and how their lives are affected by their experiences of chronic illness in England, Australia and New Zealand.
Methods The study adopted a qualitative, participatory methodology using photo-elicitation (photos and interviews) to build inductively derived knowledge grounded in the children’s experiences. Forty-five children (6–12 years) from different diagnostic groups were recruited from hospital-based and support group settings in England, Australia and New Zealand. They used digital cameras to record aspects of their lives and chronic illness and their photos then guided audio-recorded interviews.
Results Results across the three countries show similarities in the ways in which the children create meaning about their illness and the strategies they use to be ‘like other children’. Thematic analysis identified two key themes: ‘getting on, negotiating risks and benefits’ and ‘fitting in’. Although most children did not hide their illness from their peers, they ‘didn’t talk much about it’. The meaning associated with their illness shifts in response to changes in physiology and life course.
Conclusions Using photo-elicitation promotes access to children’s experiences by creating opportunities for them to talk of how they perceive, understand and manage their symptoms and experience their everyday lives.