Emotions in PPIE

Approaching potentially upsetting or emotionally sensitive topics in PPIE requires thoughtful planning, empathy, and a commitment to emotional safety for all involved.

Discussing research about mental and physical health can trigger painful memories and emotions, especially amongst those with lived experience of the condition being discussed. The logistics of conducting PPIE can also present challenges for some PPIE participants due to disabilities, neurodiversity or other factors. To facilitate representative and inclusive PPIE, it is important to consider at the outset how to remove barriers to participation and how to engage with PPIE participants in a way that is respectful, sensitive and aware of any safeguarding issues.

Prepare thoughtfully

• Understand the Topic: Familiarise yourself with the subject matter before engaging with contributors. This helps you anticipate emotional responses and prepare appropriate support.
• Assess Emotional Risk: Use a distress protocol or risk assessment template to identify potential triggers and plan responses.

Create a safe and supportive environment

• Co-create Ground Rules: Establish shared expectations for respectful dialogue, confidentiality, and emotional boundaries. These can include: Challenge ideas, not people; take breaks when needed; use plain language
• Use Emotional Check-ins: Some groups use a “traffic light system” to gauge emotional states—green (okay), amber (uncertain), red (distressed)—to help facilitators respond appropriately.
• Facilitation Skills Matter: Skilled facilitators can help balance emotional expression with group dynamics. Training in, for example, trauma-informed approaches and active listening might be useful.

Respect Lived Experience

• Validate Emotional Contributions: Emotions are not only valid—they can deepen insight and strengthen the impact of involvement. Sharing lived experience can be cathartic and empowering when handled sensitively.
• Avoid Tokenism: Ensure contributors are not asked to share personal stories without clear purpose or support. Emotional labour should be acknowledged and valued.

Provide Support and Follow-Up

• Have Support Structures in Place: Offer access to wellbeing resources, peer support, or a designated staff member for emotional debriefing.
• Leave Space Between Sessions: Avoid scheduling multiple emotionally intense sessions back-to-back. Allow time for reflection and recovery.
• Offer Choice and Control: Contributors should be able to opt out of discussions or activities that feel too personal or distressing.

Reflect and Learn

• Evaluate Emotional Impact: Include emotional wellbeing in your evaluation of PPIE activities. Ask contributors how they felt during and after sessions, and use feedback to improve future practice.
• Share Learning: Document and share how you approached sensitive topics—this helps build a culture of care and continuous improvement.

The English translation of mental health magazine The Delicate Mind (produced by a team which supports the Muslim community with managing their mental health) explores terms, jargon, stereotypes, and western versus eastern treatments and stigmas of mental health issues and might prove useful when running a PPIE activity in mental health.