‘Ethics in Focus’ - questions and answer from our webinar
We were delighted to join so many of you online to hear from our guest speakers at our recent ‘Ethics in focus’ webinar. If you haven’t yet had a chance to catch it, you can look back at it here: Anti-Stigma Network - YouTube
As promised, here are the answers to your questions below. Dr Nicole Miller has also kindly shared the slides from her presentation: Community-Based Participatory Research & Digital Storytelling-Best Practice using Peer-led approaches - UWL Repository
Q. How do you avoid inadvertently reinforcing stigma with your anti-stigma campaign?
A. The stigma trap in developing anti-stigma campaigns refers to the unintended reinforcement of the very stigmas the campaign seeks to dismantle. This occurs when the messaging inadvertently perpetuates negative stereotypes, highlights differences in ways that alienate, or positions the stigmatised group as "other."
Key Aspects of the Stigma Trap:
Reinforcing Stereotypes:
Focusing too heavily on the problem can emphasise the stigma rather than reducing it. For example, overemphasising the challenges faced by a group might lead people to see them as solely defined by their difficulties.
Overgeneralisation:
Treating a group as a monolith can erase individual experiences and reinforce a sense of "them" versus "us." This framing can deepen divides instead of fostering understanding.
Pity vs. Empowerment:
Campaigns that elicit pity instead of empathy may frame the stigmatised group as powerless or dependent, which can further marginalise them.
Unintended Associations:
Poorly chosen language or imagery can inadvertently associate the stigmatised group with negativity. For instance, linking mental illness with violence (even in the context of dispelling myths) can unintentionally strengthen that false association.
Exclusion of Target Audience:
If the campaign is designed without the input of people with personal experience, it can miss the mark, fail to resonate, or feel patronising, leading to a lack of authenticity.
Message Framing:
Using defensive or corrective tones ("Not all people with X are Y") can backfire by reinforcing the negative stereotype being denied.
Avoiding the Stigma Trap:
High Participation: Co-develop and co-design campaigns with people with lived experience of stigma using principles of community participatory approaches, shared decision making and equal participation in the development process to ensure reduction of tokenism, empowerment, accuracy and sensitivity
Strength-Based Messaging: Highlight positive stories, resilience, and shared humanity rather than focusing solely on challenges.
Universal Themes: Focus on values and emotions that resonate across groups (e.g., love, dignity, inclusion) to bridge divides.
Evidence-Based Approaches: Use research to understand how people perceive the issue and test messages for unintended effects.
Empathy Over Pity/Sympathy: Encourage understanding and connection rather than sympathy that distances or dis-empowers.
By being mindful of these pitfalls, campaigns can more effectively dismantle stigma rather than inadvertently reinforcing it.
Q. My experience of co-production is that people facing multiple disadvantage are often excluded. Expectations are often high and involve sustained engagement which isn't always possible. Which methodologies do you find most accessible to people facing ongoing harm and crisis, whose voices are often missing?
A. This can be a significant issue especially when funders require a significant outcomes for a campaign, or when our ambitions for a campaign lead is to over complicate the design of the project. Co-production with people facing multiple disadvantages, ongoing harm, or crises requires flexibility, creativity, and a commitment to accessibility and equity. To ensure these voices are included, methodologies must be responsive to their needs, recognising the constraints they face. Here are some effective methods:
1. Flexible Engagement Models
Drop-In Sessions: Use informal, low-commitment sessions where participants can join without the pressure of long-term involvement.
Multiple Modes of Engagement: Offer diverse participation options—online, in-person, or through written or recorded contributions—to accommodate varying needs and access levels.
2. Peer-Led Approaches
Peer Facilitators: Engage facilitators with lived experience of similar disadvantages to lead or co-lead sessions. Their presence can foster trust and relatability.
Buddy Systems: Pair participants with peers who can provide informal support and encouragement throughout the process.
3. Short and Focused Interactions
Micro-Consultations: Use brief, targeted conversations to gather input without requiring lengthy commitments. This approach respects participants’ time and emotional energy.
Real-Time Co-Creation: Develop ideas or solutions collaboratively in shorter workshops, minimising the need for follow-ups.
4. Trauma-Informed Practices
Safety First: Prioritise emotional and physical safety by providing clear boundaries, trigger warnings, and access to support services.
Empathy and Care: Ensure facilitators are trained in trauma-informed approaches to handle sensitive topics with care.
5. Creative and Non-Traditional Methods
Storytelling: Use storytelling, art, or music to gather insights in a way that feels less formal or intimidating.
Participatory Visual Methods: Encourage participants to use photography, drawings, or videos to express their perspectives.
Cultural Practices: Incorporate culturally relevant methods that resonate with participants’ backgrounds and communities.
6. Decentralised and Mobile Approaches
Outreach-Based Participation: Meet people where they are, such as community spaces, rather than expecting them to come to you.
Mobile Workshops: Take activities into participants’ environments to reduce logistical and emotional barriers.
7. Compensation and Practical Support
Fair Compensation: Provide financial remuneration for time and input, recognising the value of lived experience as expertise.
Reduce Barriers: Cover transportation, childcare, meals, or other logistical needs to facilitate participation.
8. Iterative Feedback and Validation
Iterative Design: Allow for input in stages, ensuring participants can contribute when it’s feasible for them. Provide updates to show their input is valued and implemented.
Validation Sessions: Return to participants with drafts or prototypes to ensure their feedback has been accurately reflected.
9. Partnerships with Trusted Organisations
Bridge Organisations: Work with organisations already serving the people you are seeking to include to leverage existing trust and relationships.
Advocates: Empower caseworkers or advocates to act as intermediaries or supporters during engagement activities.
10. Focus on Shared Power
Redistribute Decision-Making: Share power meaningfully by including participants in not only providing input but also shaping agendas and decision-making processes.
Transparent Processes: Clearly communicate how their contributions will influence outcomes and involve them in evaluating the final results.
Key Principles for Accessibility
Respect Variability: Recognise that participants’ ability to engage may fluctuate, and be prepared to adapt timelines and expectations.
Minimise Harm: Avoid re-traumatisation by focusing on strengths, future opportunities, and empowerment rather than solely on deficits or challenges.
Listen Deeply: Ensure participants feel heard and valued, even if their involvement is brief or sporadic.
And finally, make it fun! Find a way to be playful and experimental. By embedding these methods and principles into co-production processes, the voices of those facing multiple disadvantages can be included meaningfully and sustainably.
Q. Do you have suggestions on how to manage stigma & exclusion within peer groups?
A. Managing stigma between participants in the creation of anti-stigma campaigns is critical to fostering a respectful and collaborative environment. In fact, we can view the experiences of creating the project as one of the outcomes of the project. Participants in creation of a campaign are themselves part of the learning experience.
Here’s some ideas on how to approach it:
1. Create a Safe and Inclusive Environment
Establish Ground Rules: At the outset, set clear guidelines for respectful communication, emphasising that all contributions are valued.
Confidentiality: Ensure that participants feel safe sharing personal experiences by committing to confidentiality and making this a key principle.
Facilitator Role: Develop your skills in facilitation so you can identify and address stigma-related dynamics and intervene when necessary.
2. Encourage Representation and Diversity
Diverse Voices: Ensure that the group includes a range of perspectives, especially from people with lived experiences of the stigma being addressed.
Avoid Tokenism: Treat all participants as equals; no one should feel that they are there solely to "represent" their group.
3. Promote Empathy and Understanding
Shared Stories: Encourage storytelling and sharing of lived experiences to humanise and build empathy among participants.
Perspective-Taking: Use activities that help participants understand different viewpoints and experiences.
4. Address Bias and Stigma Explicitly
Training and Education: Offer sessions on stigma, its effects, and how it can manifest—even unintentionally—among participants.
Call-In Culture: Encourage participants to “call in” rather than “call out” each other when unintentional stigma occurs. This approach is less confrontational and more focused on education.
5. Facilitate Open Dialogue
Moderate Discussions: Actively guide discussions to ensure all voices are heard and that no one dominates others.
Neutral Language: Use language that avoids stigmatising terms, and encourage participants to do the same.
6. Acknowledge and Learn from Missteps
Normalise Growth: Emphasise that addressing stigma is a learning process and mistakes will happen. What matters is how they’re addressed.
Reflect and Debrief: Regularly reflect on group dynamics and address any tensions or stigmatising behaviours in a constructive way.
7. Centre Lived Experience
Empower people who are stigmatised: Ensure that participants from stigmatised groups have a strong voice in shaping the campaign/project and feel supported in sharing their perspectives.
Balance Emotional Burden: Avoid placing the entire burden of educating others on people from stigmatised groups; this responsibility should be shared.
8. Follow-Up Support
Resources: Provide participants with access to mental health resources or support networks, especially for those who might find the discussions triggering.
Ongoing Communication: Create channels for participants to share feedback about their experience and make adjustments as needed.
By fostering an environment of respect, inclusion, and empathy, anti-stigma campaigns can be collaboratively developed without perpetuating stigma among participants.