How Can We Find People with Lived Experience?

How Common Is Lived Experience with Suicide?

The National Survey on Drug Use and Health revealed that 10.6 million adults in the United States ages 18 and older (4.3%) had thought seriously about trying to kill themselves, and an estimated 1.4 million adults (0.6%) made a suicide attempt in the past year.1

In another study, 48% of the participants reported they knew someone who had died by suicide.2 Based on these studies, it appears that it is not unusual to be affected by suicide, either personally, or through a friend or family member’s struggles or death by suicide.

People who have lived experience with suicide vary in the ways they have been affected by and identify with this part of their history. Some consider their lived experience as just something that happened in their past that is not part of their self-identity. Others may see their lived experience as more significant in their life and as a part of their identity.

Within both groups, there is variation in a person’s comfort level in disclosing that suicide is part of their history. Some people may not be comfortable disclosing their lived experience in the workplace for many reasons, others would be comfortable sharing but it has never seemed appropriate to do so, and still others are open about their lived experience with suicide.

In recruiting people with lived experience, clearly indicate your desire for their involvement. Consider incorporating the lived experience of employees as one of your organization’s central values. It is not common in some fields to include lived experience as a qualification for hiring or participation in project development, but there is clear precedent and substantial history across a range of disability, mental health, substance use treatment, and related service fields.3 In job descriptions, articulate how lived experience adds value to otherwise equal candidates. 

Recruiting within your own organization

Given the national statistics on how many people are affected by suicide, your organization may already have staff members who have lived experience through loss of a loved one, experiencing a family member’s struggles, or their own history. To recruit individuals who have lived experience within your organization, please consider the following guidance and examples.

Use your informal network

  • Invite staff in your organization who have been touched by suicide to talk about the proposed project, and get their input on how to recruit participants with lived experience.
  • Ask colleagues if they know someone who might be interested in the project. Use internal networks to spread the word about the project.

Make it easy to participate

  • Announce the planned project to all staff members. Explain why the organization is pursuing this project.
  • Include a self-disclosing statement of recovery about a behavioral health problem/issue from a senior staff member, when possible. (Lead by example!)
  • State that the organization is seeking employees with lived experience.
  • Provide a link to a survey, sign-up form, letter, announcement, or other quick way for employees to learn about and engage with the project. See the Tools section of this toolkit for examples.

Make it desirable to participate

  • Send a recruiting invitation to all staff at all levels of the organization and describe the potential responsibilities of participants regarding tasks such as:
    • Making recommendations/decisions
    • Writing draft policy
    • Designing effective approaches
  • Describe the connection of this project to the organization’s mission and values and how it will save lives.
  • Emphasize the value of people who have lived experience to provide insider knowledge, expertise, and perspective that could change the way the organization operates and might go undetected/unknown to those without lived experience.

Be clear about expectations and how you will provide support

  • Emphasize that everyone who participates in the project brings life experience (and professional experience) to the table. Some will be closer to this issue than others.
  • Share that no personal disclosure is required. Describe that discretion is expected but confidentiality is not assured.
  • State that participation is voluntary.
  • Note the estimated time commitment and whether or not there is compensation
  • Inform participants that they will be identified as a contributor to the plan.
  • Acknowledge that working to save lives is rewarding and yet can be emotionally draining.
  • List resources that will be available for support. See the Tools section of this toolkit for examples.

Formalize your intent to involve people with lived experience

  • Create a written description of the project, participant roles, and responsibilities. This adds to the credibility of the project and your commitment to purposefully include individuals with lived experience. A sample description of a community advisory board made up of people with lived experience is provided in the Tools section.

Recruiting outside your organization

As mentioned above, individuals with lived experience vary considerably in how they identify and share their experience. To recruit individuals outside your organization, you may need to exert extra effort to communicate your vision and the role that the individual would fill. Here are some suggestions and examples:

Advertise for the role/position

  • Building on the role and description mentioned above, create and post an ad or flyer, or develop a semi-structured recruiting script. See the Tools section for an example of a flyer.
    • Contact your resource network, e.g., local mental health center, substance abuse treatment center, VA, health coalition, and/or suicide prevention coalition
    • Connect with leaders in other local organizations – Meet with the directors of these organizations and discuss your project. Ask their advice on accessing individuals with lived experience (potentially current or former clients). Ask them for permission to post a description of the project in the lobby or to share it with staff and potential clients who may be interested. See if you can attend staff meetings to discuss the project, why you are seeking someone with lived experience, and their role and responsibilities. Be prepared to discuss privacy, confidentiality, and supports you will provide.

Seek input from peer specialists

  • Some agencies have peer specialists who use their life experience with a behavioral health problem to provide support and encouragement to help others move toward recovery. Some of these peer specialists may have lived experience with suicide and be interested in participating with your organization in suicide prevention.

 

These recruiting tasks are important first steps to ensure that you find the right person and your organization is set up to support success.

     

    References

    1. Center for Behavioral Health Statistics and Quality (CBHSQ). (2018). Results from the 2017 National Survey on Drug Use and Health: Detailed tables. Rockville, MD: Substance Abuse and Mental Health Services Administration. Retrieved from https://www.samhsa.gov/data/sites/default/files/cbhsq-reports/NSDUHDetailedTabs2017/NSDUHDetailedTabs2017.pdf
    2. Cerel, J., Maple, M., van de Venne, J., Moore, M., Flaherty, C., & Brown, M. (2016). Exposure to suicide in the community: Prevalence and correlates in one U.S. state. Public Health Reports131(1), 100-107.
    3. Byrne, L. (2017). Promoting lived experience perspective. Discussion paper prepared for the Queensland Mental Health Commission. Retrieved from https://www.researchgate.net/publication/313757552_Promoting_lived_experience_perspective_Discussion
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