Children and young people's experiences of cancer care: A qualitative research study using participatory methods

Background: Little is known about whether children's cancer services actually meet children's needs, as the majority of previous research has sought the views of parents as proxies. Objectives: To explore children's and young peoples' views of cancer care and to present a conceptual model of communication and information sharing. Settings: Three Principal Cancer Treatment centres in the United Kingdom. Participants: Thirty-eight participants at different stages of the cancer journey (e.g. on treatment, near end of treatment, up to 18 months following treatment) were grouped for data collection by age: young children (4-5 years), older children (6-12 years) and young people (13-19 years). Methods: Data were collected concurrently over 6 months using age-appropriate, participatory-based techniques. Techniques included play and puppets, the draw and write method, interviews and an activities day. Results: Some findings confirmed previously reported issues, such as, young children's inabilities to voice their preferences, and the importance of familiar environments and parental support for all ages. New findings suggested children worry about the permanence of symptoms, and older children are unhappy about their parents leading communications with health professionals. As communication and information sharing featured as an area in which children's and young people's preferences changed most dramatically, we propose a conceptual model of communication roles of patients, their parents, and health professionals to illuminate communication patterns. The model suggests children (aged 4-12 years) reside in the background of information sharing with health professionals until they gain autonomy as young people (around age 13). They then move into the foreground, and their parents transition into a supportive background role. Reviewing this model may help younger children realise their abilities to voice their preferences and older children to move into the foreground. Parents and professionals, in turn, can learn to develop in their supportive background roles. We encourage further testing of the model to define roles within relevant contexts. Conclusions: Overall, this study offers a perspective on the needs and preferences of children and young people receiving cancer care. Differences across ages were more striking with reference to preferences for communication. These differences are highly relevant to the way we communicate information to children and young people. (C) 2010 Elsevier Ltd. All rights reserved.