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Hope and Optimism in Pediatric Deep Brain Stimulation: Key Stakeholder Perspectives

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Abstract

Introduction

Deep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.

Objective

This study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.

Materials and Methods

Semi-structured interviews with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.

Results

Using thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.

Conclusion

Thoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations.

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Data Availability

The participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research supporting data is not available.

Notes

  1. Our findings on social media impacting levels of hope are similar to those in other studies, which have found that DBS can increase levels of unrealistic hope among patients and caregivers15, 16 but patients feel that utilizing social media can allow them to more fully participate in healthcare conversations. 17.

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Acknowledgements

Research for this article was funded by the BRAIN Initiative-National Institutes of Health [parent grant R01MH121371] (Blumenthal-Barby, Storch, Lazaro-Munoz). The views expressed are those of the authors and do not necessarily reflect views of the NIH, Baylor College of Medicine, or Harvard Medical School.

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Authors and Affiliations

  1. Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA

    Natalie Dorfman, Kristin Kostick-Quenet, Eric A. Storch & Jennifer Blumenthal-Barby

  2. Baylor College of Medicine, Houston, TX, USA

    Lilly Snellman

  3. Rive University, Houston, TX, USA

    Ynez Kerley

  4. Harvard Medical School, Boston, MA, USA

    Gabriel Lazaro-Munoz

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  1. Natalie Dorfman
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  2. Lilly Snellman
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  3. Ynez Kerley
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  6. Eric A. Storch
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  7. Jennifer Blumenthal-Barby
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Correspondence to Natalie Dorfman.

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Dorfman, N., Snellman, L., Kerley, Y. et al. Hope and Optimism in Pediatric Deep Brain Stimulation: Key Stakeholder Perspectives. Neuroethics 16, 17 (2023). https://doi.org/10.1007/s12152-023-09524-3

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