How Decisions Are Made for Children and Young People with Life-Limiting Conditions: A Critical Ethnographic Study

Abstract

This research aims to uncover the multi-dimensional decision-making processes of children and young people with life-limiting conditions in the Republic of Korea. The study uses observation, semi-structured interviews and document analysis, with a total of 120 interviews conducted. Ethical approval was obtained from the Ethics Committee of the School of Applied Social Science, Durham University, and the Institutional Review Boards in Korea (No. 4-2017-0868).
The study identified four emerging themes in the multi-dimensional decision-making processes. The first theme relates to the structural level of decision-making, highlighting oppressive decision-making processes with hidden social injustice and the hidden web of oppression, drawing on the work of Emmanuel Levinas and Pierre Bourdieu.
The second theme focuses on the family level of decision making, highlighting the undervaluing of the best interests of children and young people with life limiting conditions. The findings reveal oppression in space, time and modes of communication, drawing on the work of Levinas and Michael Polanyi.
The third theme focuses on the tacit dimensional level of decision-making processes, showing the reproduction of distorted beliefs in decision-making processes, ultimately leading to internalised oppression. This theme uses Polanyi's notion of tacit knowledge.
The fourth theme is about the extent of privilege in decision-making processes and how decisions are judged according to outcomes. The study illustrates how certain outcomes are praised or blamed, leading to forms of privilege or deprivation. The findings illustrate an understanding of social inequality using three interrelated Bourdieu concepts.
The findings suggest that ethical challenges such as oppression, distorted beliefs and social inequality need to be addressed in decision-making processes for children and young people with life limiting conditions.
This research has implications for enhancing social worker training to improve multidimensional decision-making for children and young people with life-limiting conditions, promoting holistic palliative care policies that prioritise virtue ethics, support interdisciplinary collaboration and require continuous policy evaluation.