Over the summer I found myself deeply inspired by the lived experience session at the European Symposium on Suicide and Suicidal Behavior (#ESSSB20) in Rome, where profound discussions unfolded about the critical importance of integrating the wisdom of those with lived and living experiences into every aspect of suicide prevention and recovery.
It was not lost on me that this session happened on the final day of the four-day conference, the morning after a grand gala, in a room that was not ideal for acoustics. It seemed to me that the Lived Expertise was not as valued as some other forms of wisdom.
The five presenters only had a single hour for this session. Yet, despite the limited time, each presenter—given just eight minutes to speak—filled their slot with rich, nuanced, and deeply person-centered approaches. Their presentations reflected a much deeper understanding of suicide. They were fundamentally more aimed at fostering recovery than many of the other sessions I heard on risk assessments and data trends that week.
This lived experience approach is reshaping our appreciation of the nuances of suicidal intensity, urging us to move beyond conventional frameworks and delve deeper into the personal narratives and mental landscapes of those who experience suicidal thoughts and behaviors. Reflecting on this, I was struck by how much we've traditionally missed by not centering our approaches on these voices sooner.
Respecting the invaluable insights provided by those with lived and living experiences of suicide represents a crucial paradigm shift. The old ways of relying solely on clinical or theoretical frameworks are no longer sufficient, but they remain at the forefront of many of these conferences. This realization is reinforced with every story shared, qualitative research presented, and every personal testimony given.
The work of suicide prevention isn’t just about data or theory or practice—it’s about real lives, real struggles, and the real possibility of recovery. Science is essential; however, the findings are better applied in the context of experience.
Reflecting on this “Lived Experience” Symposium's atmosphere, it was clear that there was a shared commitment to fostering an environment where every voice is heard and valued. The richness of the discussions, even within the constraints of time, reflected a collective yearning to transform how we approach suicide prevention. Each presentation, no matter how brief, contributed to a tapestry of understanding that is both profound and essential.
The recognition of lived experience as a cornerstone of suicide prevention is not just a theoretical shift—it’s a moral one. Many clinical practices we’ve relied on, such as forced hospitalization, have significant evidence showing they are ineffective at best, and in some cases, may even increase the risk of suicide.
It calls us to listen more deeply, to question more critically, and to engage more authentically with those at the center of this issue. And as I reflect on the wisdom that was shared, I am filled with a sense of hope. Hope that, with continued dedication to this person-centered approach, we can make a meaningful difference in the lives of those who struggle. We hope to co-create a future where every suicide prevention effort includes meaningful representation from those with lived experience.
As the presenters spoke, I did my best to capture the richness of their work. Here are some of the recaps that stuck out to me.
Beyond Cognitive Understanding: Exploring Mental Imagery in Suicidal Episodes
Anna Maria Nilsson, Sweden
A particularly enlightening session was led by Anna Maria Nilsson, who shared groundbreaking qualitative research that introduced a novel perspective on understanding and addressing suicidal crises, “Beyond Cognitive Understanding: Exploring Mental Imagery in Suicidal Episodes.”
Anna Maria Nilsson's presentation highlighted a critical gap in our understanding of suicidal crises—our limited focus on cognitive aspects, primarily verbal thoughts, in clinical assessments. While understanding these thoughts remains essential, Nilsson emphasized the need to broaden our focus to include the mental imagery that accompanies acute suicidal episodes (ASEs). Her research reveals that mental imagery plays a crucial role in shaping the experiences of those in suicidal crises.
Nilsson's qualitative study sought to uncover the meaning of mental imagery during ASEs. The study involved eight individuals with a history of severe ASEs, who participated in repeated in-depth interviews and a semi-structured Suicidal Cognitions Interview. Through content analysis of the textual data, it became clear that all participants experienced suicide-related imagery during their crises. The analysis identified two main themes:
Suicide-Approaching Imagery: This includes intrusive, looming images that contribute to a sense of loss of control, flashforwards that clarify the suicidal solution, or desirable but unattainable images that make the idea of suicide seem more compelling.
Suicide Preventive Imagery: This encompasses death-alienating, life-affirming, or potentially helpful images that create a mental counterbalance to suicidal thoughts, often drawing on memories of loved ones, moments of joy, or future aspirations.
Nilsson's research suggests that the meaning of mental imagery in ASEs should be understood in the context of each individual's unique experience. She advocated for a narrative approach, emphasizing the importance of exploring the personal stories and meanings attached to these images. This could significantly enhance clinical interventions by focusing on the specific mental imagery experienced by individuals in crisis.
Suicide Approach and Preventive Imagery: A Dual Pathway
Nilsson's study introduces the concepts of suicide approach imagery and suicide preventive imagery, offering a nuanced understanding of how individuals mentally navigate their experiences during a suicidal crisis. Suicide approach imagery involves visualizations that make the idea of suicide more tangible, often bringing a paradoxical sense of calm or control amidst emotional turmoil. These images can, in a twisted way, offer solace or a sense of resolution.
In contrast, suicide preventive imagery involves life-affirming images—such as memories of loved ones, moments of joy, or significant life goals—that help ground individuals in the present and future, providing a crucial counterbalance to the pull toward self-harm. By fostering these life-affirming images, individuals may find the strength to resist the urge to act on suicidal thoughts.
The Clinical Importance of Curiosity and Narrative
A significant insight from Nilsson’s research is the importance of cultivating curiosity about the mental images that emerge for individuals during suicidal crises. By exploring these images, clinicians can gain a deeper understanding of the internal experiences and narratives that drive suicidal behavior. This aligns with a person-centered narrative framework, which calls for understanding each individual's unique story and the meanings they attach to their experiences.
By engaging with a person's narrative, clinicians can help them reframe their mental imagery, shifting from suicide approach images to preventive imagery. This therapeutic strategy not only reduces the immediate risk of suicide but also supports long-term recovery by building resilience and fostering hope.
The Utility of Psychological Autopsies in Understanding Gaining Insights into Underlying Risk Factors
Eva De Jaegere, Belgium
Eva De Jaegere's work in Belgium provided another striking example of this shift towards appreciating the context offered by people with the lived experience of suicide loss. The Insight Study, a psychological autopsy examining factors associated with suicide in middle-aged adults, sheds light on the unique risks faced by individuals aged 45 to 60.
A psychological autopsy is a method used to investigate and understand the circumstances, thoughts, and feelings that may have led to a person’s suicide. It often involves reconstructing the mental state of the deceased before their death, primarily through interviews with family members, friends, and coworkers.
When working with suicide loss survivors, several ethical considerations in conducting psychological autopsies exist:
Respect for the deceased's privacy and dignity: Even after death, the individual’s confidentiality and reputation must be protected.
Informed consent: Relatives or informants need to give informed consent, recognizing the sensitive nature of the process.
Minimizing harm to informants: Interviewing grieving individuals can cause emotional distress, so care must be taken to avoid exacerbating their grief.
In this study, semi-structured interviews were conducted with loved ones asking about:
Circumstances of the death
History of suicidal behavior
Communication about suicide and euthanasia
Exposure to suicidal behavior
Physical and psychological health and care
Relationships
Housing situation
Employment and financial situation
Legal problems
Adverse life events
De Jaegere’s research findings found key differences between those who have died by suicide and those living with psychological problems within the same age group. Interestingly, controls (those with psychological problems who did not die by suicide) were more likely to discuss euthanasia and receive treatment for physical problems, while those who died by suicide were more frequently diagnosed with depressive disorders yet less likely to be in treatment for psychiatric conditions. This suggests a gap in current mental health services, particularly in engaging individuals in ongoing treatment.
Additionally, the study found that suicide cases were more likely to face issues at work and anticipate future financial problems. These findings point towards specific, actionable areas for targeted interventions—improving mental healthcare accessibility, addressing occupational stressors, and providing financial counseling or support.
Agency and Recovery
Selma Gaily-Luoma, Finland
The concept of agency is crucial in understanding how individuals navigate their recovery journeys following a suicidal crisis, yet little attention has been given to this idea. Selma Gaily-Luoma’s research with Finnish suicide attempt survivors highlights this by exploring how people who experience suicide intensity and seek services exercise agency—defined as the ability to take action in a direction perceived as aiding recovery.
After conducting in-depth-interviews with suicide attempt survivors, Selma’s findings reveal a complex interplay between agency and the support provided by services. Agency is not a static quality; it varies from task to task and situation to situation. Participants described different types of agency:
Strained agency ("trying to get on track") reflects efforts to recover despite obstacles.
Sustained agency ("on track") denotes a stable recovery process with adequate support.
Uncontained non-agency ("lost at sea") indicates a lack of both intention and power to act towards recovery.
Contained non-agency ("stuck but safe") describes situations where individuals feel unable to progress but do not feel threatened or unsafe.
These nuanced descriptions underscore the importance of understanding and facilitating recovery-related agency. They also suggest that services need to recognize and support recovery-related intentions, distinguish between lack of intentionality and lack of power to act, and provide tailored support to help individuals navigate their unique recovery journeys.
In other words, in healthcare settings, this research provides three key practical implications for suicide prevention and recovery:
Assigning suicide prevention roles that support recovery-related agency can reduce objectifying practices (aka “Clipboard Counseling”).
Differentiating between a lack of recovery intention and a lack of power to act on intentions can help in designing better interventions.
Recognizing and encouraging service users' recovery-related intentions and efforts enhances their motivation and should be emphasized in service interactions.
Enhancing Suicide Prevention – A Call for a Person-Centered Approach for Caregivers of People Experiencing Suicidal Intensity
Malin Rex, Sweden
Malin Rex's work in Sweden further illustrates the importance of a person-centered approach to suicide prevention. Rex's research, conducted in collaboration with non-governmental organizations, revealed that current suicide prevention efforts often lack true co-creation with the individuals they aim to help. Participants reported feeling marginalized and excluded from decision-making processes, with their needs and preferences frequently overlooked.
This lack of person-centeredness can erode trust between patients and professionals, leading to higher dropout rates and less effective interventions. The research calls for a shift towards co-creation in suicide prevention strategies, where individuals with lived experience and their families are integral partners in the healthcare process. This approach recognizes that those directly affected by suicide have unique insights and perspectives that are critical to developing more effective and empathetic interventions.
For instance, loved ones and caregivers are often disregarded in suicide prevention and can feel like “taxi drivers” cast off to the side. Instead, they can be “co-pilots” in the recovery support.
To enhance person-centered suicide prevention, strategies inspired by maternity care approaches are recommended. This includes engaging stakeholders early in the process and adopting a "toothbrushing strategy," which emphasizes small, consistent support efforts over time. Planning for potential hospital visits and practicing skills that can be used at home are also crucial. Additionally, ensuring a smooth transition from inpatient to outpatient care is important. These strategies focus on providing proactive, continuous, and supportive care for individuals at risk of suicide.
Embedding Lived Experience in National Strategies
Keir McKechnie, Scotland
Scotland's experience with its National Suicide Prevention Lived Experience Panel, as shared by Keir McKechnie, offers a practical example of embedding lived experience at the heart of suicide prevention strategies. Established in 2018, this panel aims to ensure that the Scottish Government's suicide prevention efforts are informed by both lived experience and academic research.
Key themes from the panel's work include the importance of safe and inclusive recruitment practices, the need for clear communication and expectations, and the value of relational, dialogic methods of engagement. The panel also emphasizes the importance of trauma-informed support and effective feedback mechanisms to avoid tokenistic participation.
These efforts highlight the benefits of involving individuals with lived experience in a meaningful way, not just as participants but as co-creators and decision-makers in the development and implementation of suicide prevention strategies.
Conclusion: A Call to Center People with Lived Experience in Suicide Prevention
The collective insights highlight a crucial shift needed in suicide prevention: centering efforts on the experiences of those with lived experience. By valuing their voices, we can create more compassionate, person-centered strategies. This requires moving from a clinical model to a co-created approach, where those affected are involved as equal partners in designing interventions. Embedding their wisdom ensures a more humane and responsive approach to those at risk. The ESSSB symposium emphasizes that these voices are essential for advancing suicide prevention and fostering healing across communities.
Incorporating the voices of people with lived experience into suicide prevention strategies is not just a matter of inclusivity; it represents a transformative shift that enriches our understanding and improves the effectiveness of interventions. Individuals with lived experience provide invaluable insights into the complexities of suicidal crises, offering perspectives that are often absent from clinical and theoretical discourses.
Their contributions can help develop more nuanced, empathetic, and effective approaches to suicide prevention. Actively involving them in the design, implementation, and evaluation of suicide prevention programs ensures these interventions are grounded in real-world experiences and tailored to the diverse needs of those at risk.