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25 - Users’ Involvement in Decision-Making: Lessons from Primary Research in India and Japan

Published online by Cambridge University Press:  20 August 2021

Michael Ashley Stein
Affiliation:
Harvard Law School
Faraaz Mahomed
Affiliation:
Wits University
Vikram Patel
Affiliation:
Harvard Medical School
Charlene Sunkel
Affiliation:
Global Mental Health Peer Network
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Summary

People with psychosocial disabilities experience substituted decision-making, including involuntary admission, regularly. The Convention on the Rights of Persons with Disabilities (CRPD) mandates States parties to respect the will, preference, and autonomy of the person at all times. However, implementing this at policy and practice level in each country is still controversial. To explore will, preference, and autonomy of people with psychosocial disabilities, this chapter aims to understand the types of contexts and relationships service users were engaged in leading up to their participation in admission decision-making. Service users who previously had been involuntarily admitted designed and carried out interviews at psychiatric hospitals in Japan and India. The interviews showed that service users were marginalized through power imbalances and a lack of communication. Service users were discouraged from nurturing autonomy in their everyday lives leading up to admission decision-making. Based on the study, we recommended policies that would give service users the same powers as other stakeholders and encourage open communication between them. Implementing these policies into their everyday lives would enable them to confidently voice their will and preference at the admission decision-making stage, including making direct decisions or effectively using supported decision-making.

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Chapter
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Publisher: Cambridge University Press
Print publication year: 2021

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