Chronic childhood illnesses are increasing and have a profound impact on children's lives, requiring long-term care and affecting them emotionally. Research suggests that when children act as partners with doctors and parents in the discussion and care of their conditions, they are better at following treatment plans as well as less anxious and unhappy. Despite these benefits, however, children's involvement in their care is generally poorly supported by current clinical practices, by parents, and by technologies designed to help manage health conditions. This project's goal is to better understand challenges centered on child patients, and the ways in which children with cancer do, and could, work with their doctors in their care. To do this, the research team will first observe a number of patients, parents, and doctors during clinical visits, and interview them outside of the visits to understand the issues involved. Based on findings from clinic observations and interviews, the researchers will then work with children and caregivers to develop a series of ideas for systems that help address those challenges and improve children's ability to actively participate in their care and manage their own needs and feelings about their condition. Although the work will be done primarily with children and in the context of cancer, many of the findings should transfer to other chronic conditions and populations who have trouble communicating their needs to clinicians. Further, the study will increase our knowledge of how to design with and for children.
The main theoretical and empirical thrust will be to increase the understanding of and ability to share information from the lay and child perspectives in oncology care; in both cases, differences in power and ability are likely to hinder pediatric patients' effective information sharing and involvement. Ability is likely to be a particular a problem for children, who are less able than adults to both express their needs and state, and to understand and act on health information. The work will proceed in two main phases, focusing on pediatric patients with cancer who have had bone marrow transplantation, which imposes significant care burdens and distress on both children and parents. In phase 1, the research team will observe a number of outpatient visits, focusing on the children's comprehension and reaction to information they receive and the way they share their own emotional and physical state. The researchers will conduct a parallel set of interviews that focus on parents', pediatric oncologists' and psychologists' practices when working with child patients: how clinicians and caregivers decide what to share and when and how to share health information. Synthesizing these data will lead to a rich, descriptive account of the barriers and practices around pediatric information sharing that will inform the study in phase 2 around designing tools to support this information sharing. In phase 2, the team will host a series of participatory design workshops that include pediatric patients, their parents, clinicians, and members of the research team. Early workshops will explore prototype designs using a comic-like sketching/storyboard approach that is both validated in user experience design and familiar and accessible to children. In those workshops, children will be asked to create characters and stories that represent their own challenges and ideas around communicating and managing their illness, and suggest ideas that would help them, brainstorming and working with other participants to develop the ideas. Working with child psychologists, the team will analyze and use those outputs to design higher-fidelity prototypes of support tools. They will then present the prototypes back to the participants at later workshops as a concrete example that both participants and researchers can use to advance their understanding of requirements for designing such tools that support pediatric communication and information sharing.
