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

Area of Science:

• Neuroscience
• Pediatric Neurology
• Medical Ethics

Background:

• Deep brain stimulation (DBS) is an emerging treatment for pediatric refractory dystonia.
• Managing patient and caregiver expectations is crucial, especially for
• last resort
• interventions.

Purpose of the Study:

• To explore clinician and caregiver perspectives on hope and unrealistic optimism in pediatric dystonia DBS decision-making.
• To inform effective communication strategies for clinicians.

Main Methods:

• Semi-structured interviews with 29 clinicians and 44 caregivers.
• Thematic content analysis of interview transcripts.

Main Results:

• Clinicians frequently expressed concerns about caregiver false hopes and desperation, with many intentionally lowering expectations.
• Caregivers generally viewed DBS as a last resort, with most holding high but reasonable hopes, though some struggled with setting expectations.
• A significant portion of caregivers reported negative feelings due to unmet expectations post-treatment.

Conclusions:

• Ensuring realistic outcome expectations requires thoughtful discussion between clinicians and stakeholders.
• Effective communication strategies are needed to navigate hope and optimism in DBS decision-making for pediatric dystonia.