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Adolescent OCD Patient and Caregiver Perspectives on Identity, Authenticity, and Normalcy in Potential Deep Brain Stimulation Treatment

Published online by Cambridge University Press:  11 April 2024

Jared N. Smith Open the ORCID record for Jared N. Smith [Opens in a new window] ,
Natalie Dorfman ,
Meghan Hurley ,
Ilona Cenolli ,
Kristin Kostick-Quenet ,
Eric A. Storch ,
Gabriel Lázaro-Muñoz  and
Jennifer Blumenthal-Barby
Jared N. Smith*
Affiliation:
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA
Natalie Dorfman
Affiliation:
Department of Philosophy, University of Washington, Seattle, WA, USA
Meghan Hurley
Affiliation:
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA
Ilona Cenolli
Affiliation:
Center for Bioethics, Harvard Medical School, Boston, MA, USA
Kristin Kostick-Quenet
Affiliation:
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA
Eric A. Storch
Affiliation:
Psychiatry & Behavioral Sciences, Baylor College of Medicine, Houston, TX, USA
Gabriel Lázaro-Muñoz
Affiliation:
Center for Bioethics, Harvard Medical School, Boston, MA, USA
Jennifer Blumenthal-Barby
Affiliation:
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA
*
Corresponding author: Jared N. Smith; Email: smith.jaredn@gmail.com
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Abstract

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD.

Keywords

agencyauthenticitychildrendeep brain stimulationidentitynormalcyobsessive-compulsive disorder
Type
Research Article
Information
Cambridge Quarterly of Healthcare Ethics , First View , pp. 1 - 14
Copyright
© The Author(s), 2024. Published by Cambridge University Press

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References

Notes

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