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Children's participation in chronic illness decision-making: an interpretive description McPherson, Gladys Irene

Abstract

Participation in decision-making and inclusion in the important matters of one's life are upheld as measures of equality and indicators of the moral status of individuals in liberal democratic societies. To some extent, the status of children in western societies is a contested question, and hence, the nature of children's contributions to decisions is a matter of debate. Evidence suggests that in spite of an apparent societal commitment to children's participation in the important matters of their lives, children tend to be excluded from decisions in which they might reasonably be involved. This project investigated the participation of one group of children—chronically ill school-age children— in decisions related to their health care. Adopting interpretive description as methodology, data were collected and analyzed through interviews and participant observation with 31 chronically ill children (ages 7 to 12 years) and their parents, as well as through interviews with health care providers. In this study, children's participation in health care decisions emerged as a complex activity, deeply embedded in relationship and history. Participation varied within two key domains: children's opportunities and abilities to formulate and make known their intentions and desires in decisional contexts (the resonance of children's voices); and the standing achieved by children's views within decisional processes (the relevance of children's voices). The interplay of adult authority and children's agency at the nexus of the resonance and relevance of children's voices created certain participatory spaces, depicted as moral and social realms variously characterized by children's silence, children's tangible expression, adult imposed authority, or adult assumed responsibility. The findings of this study demonstrate a need to re-think our concept of children's participation, and point to the importance of developing a more relational and contextual understanding of how chronically ill children may contribute to important matters in their lives. The findings also support a view that nurses and other health care providers hold certain responsibilities to critically question the relationships and structures that comprise children's health care encounters, toward a goal of creating conditions where possibilities for children's participation are optimized.

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