Children’s participation in decisions, discussions, and actions in pediatric oncology settings in New Delhi, India: A focused ethnography

Abstract

Aim: Nested within an emerging field of childhood ethics, this study was guided by a moral experience framework, and sought to better understand children’s actual and desired participation in decisions, discussions, and actions in a pediatric oncology setting in New Delhi, India. Methods: A focused ethnography was conducted in three pediatric oncology settings. Over three-months, key informant interviews were conducted, key documents were retrieved, and a series of participant observations and semi-structured interviews with children with cancer were conducted. Data was consolidated between sources, open-coding was conducted within/between sources, codes were categorized, and categories were comparatively analysed. Results: Eight key informants were consulted and various key texts were retrieved to provide contextual descriptions of the settings. Twenty-two child participants, with varying ages and cancer diagnoses participated. A conceptualization of participation was constructed based on how the children navigate their worlds within the setting. The results reveal a wide range of ways in which different children can experience their participation or exclusion in decisions, discussions, and actions that affect them. Some cases highlight that children prefer to have decisions made for them, whereas others desire involvement. Certain factors, such as the healthcare professionals’ attitudes, were found to be facilitators to the child’s participation. Children also identified barriers to their participation, including the environment, unfamiliarity with the setting, and the symptoms of illness. Conclusion: All children have the capacity and interest to participate in some aspects of their care, through either decisions, discussions, and/or actions. The extent that each child actually participated varied widely and the expression of preferences or engagement in familiar activities was a starting point for participation. Results of this study advance our understanding of the moral experiences of children with cancer in New Delhi, India, which is useful information for healthcare professionals, policy makers, families, and interested others.