Objective: To explore stakeholder perspectives to identify shared research priorities on suicidality and assisted dying in Parkinson’s and co-design subsequent research.
Background: People with Parkinson’s have multiple risk factors for suicidality and are at increased risk of suicidal behaviour. Neurological diseases are the second most frequent reason for requesting euthanasia or assisted dying after cancer. Suicidality and assisted dying are sensitive, stigmatised, and ethically contested topics, with limited research in Parkinson’s.
Method: Semi-structured interviews were conducted with seven people with Parkinson’s, five relatives/caregivers, and four multidisciplinary healthcare professionals. All participants were screened to exclude active suicidal ideation. Topic guides focused on future research into suicidality and assisted dying in Parkinson’s, including research priorities, methodological considerations, cultural factors, challenges, and ethical issues. Interviews were audio-recorded, transcribed, and analysed using reflexive thematic analysis.
Results: Stakeholders prioritised research to identify risk and protective factors for suicidality, including demographic, mental health, and cultural influences. Research exploring psychological and cognitive mechanisms underlying behaviours and decisions relating to suicidality and assisted dying was also considered important. Post-diagnosis and advanced stages of Parkinson’s were identified as key time-points for research. Stakeholders recommended flexible data collection approaches, and allowing participants to choose between verbal, written, or multiple-choice response formats. Community groups, faith leaders, and healthcare professionals were seen as important facilitators for engaging underrepresented groups, reducing stigma, and screening for active suicidality.
Conclusion: Stakeholders viewed research on suicidality and assisted dying important for identifying those at risk and improving support within clinical and community settings. Co-developing research priorities and study designs with stakeholders can help ensure future research is relevant, sensitive, and inclusive of those it will ultimately impact.
To cite this abstract in AMA style:
L. Wright, S. Hussain-Ali, A. Noyce, L. Smith. Stakeholder Engagement to Inform Research on Suicidality and Assisted Dying in Parkinson’s [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/stakeholder-engagement-to-inform-research-on-suicidality-and-assisted-dying-in-parkinsons/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/stakeholder-engagement-to-inform-research-on-suicidality-and-assisted-dying-in-parkinsons/