Section Nine
Tips for Engaging Lived Experience
Engaging Lived Experience
Tips for how educators can work with persons with lived experience, support groups and how to engage with them.
Prepared by Betty-Lou Kristy, Lived Experience/‘Family’ Advocate- Mental Health, Addiction, Trauma & Bereavement (2016)
Engaging lived or family experience to share journeys of struggle and/or recovery with mental health and addiction issues can be one of the most powerful and humanizing ways to pass on knowledge to nursing students. Personal lived experience journeys (stories) and the journeys of the supporting self-defined family members (caregivers) are great examples of personal experiences and demonstrate the impact of the broader determinants of health. Specifically, lived experience of people and families can speak to the complex reality people living with mental health and substance use issues, and help to break down stigma, misperceptions, fears and myths, while breathing life into knowledge exchange.
Some of the potential outcomes of sharing lived experience include:
»» Evidence of qualitative data, such as facts and mitigating emotions, that leads to more
fulsome evidence of human tragedy and resilience, what loss of hope and dignity can do to
a person and the power of human spirit; and
»» Profound teaching moments that express the feelings behind events, enabling learners to
experience how a situation feels.
Planning tips
Here are some things that need to be considered if you are inviting lived or family experience to become part of your choices for teaching, according to the Centre for Addiction and Mental Health’s Strengthening Your Voice Speakers Training.
BEFORE THE EVENT
Ensure you inform speakers of the following items:
- The intent of the event;
- The topic you would like them to talk about—this could include specific content you would like them to include or content you prefer they stay away from;
- How much time you are allotting them to speak;
- Who else will be speaking and what their role is (for example, peers with similar experiences, health care workers, parents, youth);
- Who the audience is (for example, general public, health care workers or students at a certain level or in a particular class);
- The date and time of the event;
- The location of the event and detailed directions to get there;
- Whether you can provide them with and set up any equipment they might need (for example, computer and screen);
- How you will let them know how much time they have left to speak, or that it is time to stop speaking; and
- That you appreciate their contribution to making the event a success.
Provide speakers with:
- A contact name and details of how and when they can reach that person;
- Practice time with the microphone during the setup; and
- Encouragement.
DURING THE EVENT
Provide speakers with:
- Water;
- Tissues; and
- Any help they might need (for example, with the microphone or other equipment, with the question-and-answer part of the event).
AFTER THE EVENT
Provide speakers with:
- An honorarium; and
- Reimbursement of their travel costs (for example, mileage, parking, public transportation) or any other expenses they may have incurred related to participating in the event. If possible, provide bus fare before the event.
HOW TO DEBRIEF WITH SPEAKERS
- Ask them, for example, how they’re feeling personally and how they’re feeling about the event itself.
- Give speakers feedback about how you think the event went, including feedback about their presentation. Make constructive comments about what worked well and why.
- If it is not possible to debrief immediately after the event, tell speakers you will call them the following day to debrief.
Honorarium and/or expense reimbursement
Consider the follow recommendations regarding honorarium and expense reimbursement.
- Ensure ahead of the event that the person’s travel, accommodation, event registration costs (if applicable), and meal needs related to the event are covered up front (if needed). Keep in mind that many people with lived experience can not afford to wait 30 to 60 days to be reimbursed.
- Offer support and flexibility in how an honorarium is given. Frequently people with lived experience have money concerns so it is helpful to make it clear that it is up to the person to report the income or not. Cash is best where feasible and safe. If they are really leery to accept money, you can negotiate things like grocery cards instead—as long as gift cards are a fallback tactic and not the default go-to method.
Reflection considerations
Invited speakers may not been trained in peer support, lived experience speaking, facilitating, sharing their journey, group facilitation. Lived experienced speakers may also not have participated in many different modalities that involve sharing their journey. It is important to encourage them to use technique of reflection to answer the following questions:
- Are they ready?
- Have they considered the gains and risks of sharing their story?
- Are they aware of triggers?
- Are they aware of personal wellness?
Other elements educators may wish to provide guidance in include: preparation, questions to ask, how to know your audience, being neutral and professional, being trauma-informed, developing your story, presentation styles, taking care of yourself, managing audiences etc.
RESOURCES
Centre for Addiction and Mental Health: Strengthening Your Voice Public Speakers Guide
Centre for Addiction and Mental Health. (2013). Strengthening your voice: A public speaking guide for people with lived experience of problems with prescription pain medication.
Newfoundland: CHANNAL Consumers Health Awareness Network Newfoundland and Labrador
Nova Scotia Self Help Connection
The Ontario Peer Development Initiative (OPDI) http://www.opdi.org/members.php
Mississauga Halton Enhancing & Sustaining Peer Support, TEACH http://www.t-e-a-c-h.org/
Manitoba is focused on LGBTQetc Peer Support Groups | Rainbow Resource Centre http://www.rainbowresourcecentre.org/peersupport/
Support Groups
Youth Peer-to-Peer Support | Together to live
Mood Disorders Association of Manitoba
Saskatchewan: generalized peer support cross-disability