Engaging People with Lived Experience: A Toolkit for Organizations

Purpose

What is Lived Experience?

Lived experience is defined as “personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people.”1

It is also defined as “the experiences of people on whom a social issue or combination of issues has had a direct impact.”2

This toolkit has been developed to assist organizations and agencies leading suicide prevention programs in their communities with recruiting and engaging individuals with lived experience. It may also be useful for other organizations and agencies working in suicide prevention and care. 

Organizations that incorporate community members with lived experience are better equipped to make their services more focused, efficient, integrated, culturally appropriate, and sustainable. This toolkit provides information on how to create an inclusive organizational environment and improve suicide prevention strategies by involving individuals who have life experience with suicide in planning, strategy implementation, practice reviews, policy development, and leadership.

In suicide prevention, life experience with suicide is referred to as “lived experience.” People with lived experience include those who have:

  • Suicidal thoughts or behaviors
  • Attempted suicide
  • Supported a friend, family member, or colleague through a suicidal crisis
  • Lost a loved one to suicide

When lived experience perspectives are included in the planning, design, implementation, and evaluation stages of suicide prevention efforts, the quality, impact of services or products, and ability to develop innovative approaches that reach the target population and effectively meet their needs are vastly improved. Lived experience insights can also be extremely valuable in contributing to effective communication, enhanced safety, reduced suicide attempts and deaths, as well as enriched support and recovery for both suicide attempt and loss survivors.

Background

The National Strategy for Suicide Prevention3 highlights the importance of involving individuals with lived experience in suicide prevention efforts. To advance implementation of the National Strategy, the National Action Alliance for Suicide Prevention (Action Alliance) established several task forces focused on specific populations and issues. Reports from two of the task forces provide the foundation for the concepts discussed in this document.  

The first report, The Way Forward: Pathways to Hope, Recovery, and Wellness with Insights from Lived Experience,4 was issued by the Suicide Attempt Survivors Task Force of the Action Alliance in 2014.

This report recommends that people with lived experience be engaged as partners in suicide prevention efforts and that organizations at all levels (e.g., federal, state, community) explicitly include individuals with lived experience in suicide prevention efforts (Recommendations 1.13 and 1.16).  

The second publication is the consensus report, Responding to Grief, Trauma, and Distress after a Suicide.5 Issued in 2015 by the Survivors of Suicide Loss Task Force, the report provides recommendations for developing comprehensive supports for survivors of suicide loss, and guidance regarding policies, programs, and practices.  It recommends that suicide loss survivors are involved in these efforts.

Federal Leadership

Federally Qualified Health Centers must have at least 51% of their governing boards members be patients who are served by that health center.7

Federal leadership in recovery and systems change emphasizes the role of a person’s lived experience in positively impacting patient recovery, reducing prejudice and discrimination, and transforming leadership within behavioral health and suicide prevention. A consensus report released by the Substance Abuse and Mental Health Services Administration emphasizes this type of collaboration in responding to mental health crises.6 Similarly, the Zero Suicide model strongly encourages health care systems to engage individuals with lived experience in enhancing their clinical care, including their suicide prevention efforts.

 

Acknowledgments

Special thanks to: DeQuincy Lezine and Eduardo Vega for their earlier work and research that formed the basis for this toolkit.

Additional Contributors

Michael Cain, Clinical Director, Southwest Behavioral Health Center

Kelley Cunningham, Director, Suicide Prevention Program, Massachusetts Department of Public Health

Elaine Demello, CONNECT Supervisor of Training and Prevention Services, NAMI NH

Nicole Gibson, Director of State Policy and Grassroots Advocacy, American Foundation for Suicide Prevention

Mona Griffin, Administrative Assistant, Southwest Behavioral Health Center

Debbie Helms, Director, Samaritans of Merrimack Valley

Annemarie Matulis, Chair, American Association of Suicidology Impacted Family & Friends Committee; Founder, A Voice at the Table

Rick Strait, Manager, Integrated Treatment for Co-Occurring Disorders, Community Counseling Center

Diane Benavides Wille, Director of Diversity and Workforce Development, LifeWorksNW

Stacey Williams, Suicide Prevention Coordinator, Missouri Department of Behavioral Health

Teresa Willie, Prevention Specialist, Southwest Behavioral Health Center

SPRC Steering Committee Members

Bart Andrews, Vice President of Clinical Practice/Evaluation, Behavioral Health Response

John Draper, Director, National Suicide Prevention Lifeline

Barb Gay, (formerly) Executive Director, Area Substance Abuse Council

Kim Ruocco, Chief External Relations Officer for Suicide Prevention and Postvention, Tragedy Assistance Program for Survivors (TAPS)

CW Tillman, Chief Executive Officer, 15 Degrees North Consulting

SPRC Staff

Bridgette Collado Hausman, Director of Communication and Product Development

Terresa Humphries-Wadsworth, Associate Project Director

Jennifer Myers, Senior Project Associate

Jason Padgett, Portfolio Operations Director

Laurie Rosenblum, Research Associate and Writer

Ellyson Stout, Director

Adam Swanson, Senior Associate Program Manager

 

References

  1. Chandler, D., & Munday, R. (2016). Oxford: A dictionary of media and communication (2nd ed.). New York, NY: Oxford University Press.
  2. Sandu, B. (2017, July). The value of lived experience in social change: The need for leadership and organisational development in the social sector. Retrieved from thelivedexperience.org/report/
  3. U.S. Department of Health and Human Services (HHS) Office of the Surgeon General, and National Action Alliance for Suicide Prevention (Action Alliance). (2012). 2012 National Strategy for Suicide Prevention: Goals and objectives for action. Washington, DC: HHS. Retrieved from https://www.hhs.gov/surgeongeneral/reports-and-publications/suicide-prevention/index.html
  4. National Action Alliance for Suicide Prevention (Action Alliance), Suicide Attempt Survivors Task Force. (2014). The way forward: Pathways to hope, recovery, and wellness with insights from lived experience. Waltham, MA: Education Development Center, Inc. Retrieved from http://www.sprc.org/resources-programs/way-forward-pathways-hope-recovery-and-wellness-insights-lived-experience
  5. National Action Alliance for Suicide Prevention (Action Alliance), Survivors of Suicide Loss Task Force. (2015). Responding to grief, trauma, and distress after a suicide: U.S. national guidelines. Waltham, MA: Education Development Center, Inc. Retrieved from http://www.sprc.org/resources-programs/responding-grief-trauma-and-distress-after-suicide-us-national-guidelines
  6. Substance Abuse and Mental Health Services Administration (SAMHSA (2009). Practice guidelines: Core elements for responding to mental health crises. HHS Pub. No. SMA-09-4427. Rockville, MD: Author. Retrieved from http://store.samhsa.gov/product/Core-Elements-for-Responding-to-Mental-Health-Crises/SMA09-4427
  7. Health Resources & Services Administration (HRSA). (2018, January). HRSA Health Center Program, Chapter 20: Board Composition. Author. Retrieved from https://bphc.hrsa.gov/programrequirements/compliancemanual/chapter-20.html#20.21