Accessibility Tools
Ideas of and issues in engagement and participation including overcoming barriers.
Marie Brown, Ph.D., and Nev Jones, Ph.D., join Dr. Dixon and Dr. Berezin to discuss steps to build a pipeline of researchers with significant psychiatric disabilities and intersecting lived experiences and to increase service user participation in the U.S. mental health care system.
Topics include:
As involvement of consumers/survivors in planning, delivery, and evaluation of services has increased, expectations of authentic and effective engagement, versus tokenism, have also risen. Different factors contribute to, or detract from, authentic engagement. Writing from mental health consumer/survivor and nursing positioning, respectively, we aim to redress the common problem of including only a narrow range of views and voices.
This paper introduces a conceptual model that supports leaders in research, clinical, service, and policy roles to understand the necessity of engaging with a broader spectrum of consumer/survivor views and voices. The model draws on published consumer/survivor materials, making explicit diverse experiences of treatment and care and identifying the subsequent rich consumer/survivor advocacy agendas. We propose that strong co-production is made possible by recognizing and welcoming consumer/survivor activist, facilitator, transformer, and humanizer contributions. The conceptual model forms the basis for a proposed qualitative validation project.
The Psychiatric Services Editor’s Choice provides essential curated collections from recent issues of Psychiatric Services. Each month, Editor Lisa Dixon and the Early Career Psychiatrist Advisory Committee offer a curated collection from the rich resource of articles published in the journal. Updates will focus on one area, summarizing for the researcher, clinician, and policy analyst the latest information and seminal research with links to specific content from Psychiatric Services.
Engaging people who have lived experience of mental health conditions and services (including patients, family members, and other stakeholders) can add significant value to research, policy, and program development. Individuals with lived experience have been drivers of change in the mental health system by leading research and programs, partnering with researchers, or consulting during the research process. Advancing the use of peer support programs, advocating for the rights of people with psychiatric disabilities, and creating alternatives to traditional service models (e.g., peer-run respites) are among the contributions that people with lived experience have made to the field. Despite their valuable perspectives and unique understanding of services and systems, individuals with lived experience continue to be excluded from research, policy making, and organizational leadership, more so for individuals with psychiatric disabilities, more deeply stigmatized conditions, and greater experience with public systems.
Community-engaged and community-based participatory methods help to ensure that valuable community perspectives are prioritized in both research and implementation. Communities often know the barriers to care and other challenges facing their members and know how to deploy resources efficiently and effectively to serve the people who need them most. This collection provides an overview of recent research and is a call to action regarding the integration of individuals with lived experience as leaders and in shaping service delivery as well as research design, measurement, and conceptualization.
This paper has been developed to prompt thinking and discussion on ways to promote lived experience participation in Queensland’s mental health sector.
Over the past decade, there has been a marked uptick in interest in increasing service user participation in the U.S. mental health care system, including clinical practice, research, and policy. Too often, however, these efforts remain superficial and unlikely to bring about the deeper transformation of systems long called for by grassroots activists.
This Open Forum—addressed to mental health administrators, researchers, and clinicians—highlights the importance of considering diverse, critical perspectives and engaging in ways that move beyond purely intellectual rapprochement.
The National Mental Health Consumer and Carer Forum and the National Primary Health Network Mental Health Lived Experience Engagement Network acknowledge the Traditional Custodians of the lands and waters on which we work and live on across Australia. We recognise their continuing connection to land, waters, culture and community. We pay our respects to Elders past and present.
“A lived experience recognises the effects of ongoing negative historical impacts and or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. It encompasses the cultural, spiritual, physical, emotional and mental wellbeing of the individual, family or community.
“People with lived or living experience of suicide are those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, been bereaved by suicide or having a loved one who has died by suicide, acknowledging that this experience is significantly different and takes into consideration Aboriginal and Torres Strait Islander peoples ways of understanding social and emotional wellbeing.” - Aboriginal and Torres Strait Islander Lived Experience Centre
We welcome Aboriginal and Torres Strait Islander people to this site and invite them to provide any feedback or items for inclusion.
We also recognise people with lived and living experience of mental ill-health and recovery and the experience of people who are carers, families, kin, or supporters.