Contagion’s complexities: When persuasive theory takes priority

 In today’s post, Veronica Heney considers how skewed hermeneutical resources – in intimations of contagion around valid discussions of self-harm – can frame multiple layers of epistemic injustice.

Self-harm’s relation to culture – to society, to sociality, to cultural texts, to the arts – is most frequently framed through the theory (and ensuing fear) of contagion. From policy to public discourse and academic research, there is a recurrent fear both that seeing self-harm will lead to people beginning to self-harm, and that individuals discussing self-harm with their peers (primarily in healthcare or educational settings) will lead people to begin self-harming.

My assessment of the psychological theories and evidence behind social contagion as a broad theory is that it is not nearly as thorough or well-grounded as the theory’s popularity might lead us to believe. A much-referenced contemporary epidemiological study examined a large dataset and drew conclusions about the relative contagiousness of a wide range of phenomenon from smoking to obesity to depression to divorce to sexuality to tastes in music. This collection of research is repeatedly used to prove that social contagion exists – yet (as acknowledged by the researchers) it only evidences correlation not causation, and fails to account for any number of confounding factors.

Specific evidence on self-harm is similarly patchy. Sarah Chaney has pointed out that initial contagion research focused on the spread of self-harm in hospital wards, and often drew on small samples or used a flawed study design. Nevertheless, publications either drew unduly strong conclusions, or were cited in ways that ignored their limitations and extended their conclusions far beyond institutional healthcare settings.

Despite the flawed evidence base, literature review papers are often published stating definitively that self-harm is contagious. Even more concerningly, this supposedly well-established fact has expanded beyond the interpersonal to incorporate the realm of media and the internet, where conclusions are drawn based on general concepts in social psychology (such as script theory and disinhibition theory) and empirical research on suicide, without any acknowledgment that the state of play with regards to self-harm might be very different indeed.

First, all this epistemically weak evidence is taken very seriously, in part because it is quantitative, and therefore taken to be objective, firm fact. Almost none of this evidence involves in-depth qualitative research with people who self-harm specifically exploring experiences of contagion. As a result, the evidence about self-harm and contagion is knowledge in which people who self-harm function as an object of knowledge, but are never permitted to author knowledge. 

This is, precisely, an example of epistemic injustice. What we know – or worse, what it is taken for granted that we know, but in fact might not be true at all – is knowledge that denies and silences the insight, experience, and expertise of people who self-harm. It is striking how easy it is to disregard people who self-harm, to trust psychology, neuroscience, and other medicalised frameworks and not to question what these approaches miss.

Second, it is important to notice that while this is an epistemic failing, it is one which has very tangible consequences. An interesting pre-cursor to the now widely-discussed social-media ban for young people was the Online Safety Act, which came into effect in 2023. The act introduced an offence which prohibited the deliberate encouragement of self-harm. While the offence itself seemed to prohibit bullying or coercion, it was framed by MPs and by campaigners as a response to recommendations from the Law Commission on the ‘glorification’ of self-harm online, and to recent inquest reports from the deaths of young people who engaged with self-harm content online and later died by suicide. 

I was involved in a campaign led by my friend and colleague Courtney Buckler to encourage lawmakers to specify that the offence would apply only to ‘malicious’ content (which we agree should be prohibited). We felt cruel bullying should be distinguished from other content which might be deemed encouragement – for instance posts in which people shared positive feelings around their own self-harm, or harm minimisation resources designed to help people self-harm safely, and reduce the risk of unintentional serious injury.

The Conservative Party politicians who had proposed the law did not take our advice and we have yet to see what the consequences of this unnecessarily broad law might be. But I worry about how fears of contagion, fears of anything that frames self-harm positively, might be used against people who self-harm to limit what we can say, what we can share, and what we can know. I am frustrated that these fears are built up from so shaky an evidence base, and I am certain that to truly understand how people who self-harm may or may not be influenced by the world around them – by their friends, by social media posts, by TV shows or by anything else – we need to start by talking to them, listening to them, and placing them at the centre of the knowledge we create about self-harm. 

My new project, Re-Knowing Self-Harm, tries to do just that, drawing on a range of different creative methods to rethink the relationship between self-harm and culture. I’ll be running a lived experience reading group around social contagion, and together we’ll decide how we might do research that begins with people who self-harm, rather than leaving them on the periphery of knowledge-making about their own lives.

Further Readings

Chaney, S., 2017. Psyche on the Skin: A History of Self-harm. Reaktion Books.

Christakis, N.A. and Fowler, J.H., 2013. Social contagion theory: examining dynamic social networks and human behavior. Statistics in medicine, 32(4), pp.556-577.

Jarvi, S., Jackson, B., Swenson, L. and Crawford, H., 2013. The impact of social contagion on non-suicidal self-injury: A review of the literature. Archives of suicide research, 17(1), pp.1-19.

Whitlock, J., Purington, A. and Gershkovich, M., 2009. Media, the internet, and nonsuicidal self-injury.

Open letter on self-harm and the Online Safety Bill: A call for caution, nuance, and care - NSUN website

Veronica Heney is Assistant Professor for Medical Humanities at Durham University, and co-lead of the Narrative Practices Lab at Durham Research Platform for Medical Humanities. Her work brings together social science and literary studies methods to explore narratives and experiences of madness and mental distress. She is co-founder and Research Lead of Make Space, a user-led collective which facilitates conversations about more generous, nuanced, and caring ways to support those with experience of self-harm.

Veronica Heney

Epistemic Justice in Mental Healthcare

This week we announce the publication of an edited collection which is entirely open access: Epistemic Justice in Mental Healthcare: Recognising agency and promoting virtues across the lifespan (Palgrave 2024), edited by myself, Lisa Bortolotti. The book is an output of project EPIC, featuring eight new chapters exploring epistemic justice in mental health. 

Epistemic Justice in Mental Healthcare

In the Preface (downloadable here), Matthew Broome and I frame the discussion as a way to affirm the role of the mental health patient as a person, an agent, and a collaborator. When we are mental health patients, we are persons because we are more than our health or our diagnosis, we have needs and interests that matter and that affect the way in which our health impacts our lives. 

We are also agents, because despite the vulnerabilities of our status as patients, we have a perspective that matters and the capacity to contribute to positive change. Crucially to the success of clinical encounters, we are partners in the project of addressing our health issues. We can collaborate with healthcare professionals by sharing our experiences and participating in decision making.

Chapter 1, Being understood: epistemic injustice towards young people seeking support for their mental health, is authored by Michael Larkin with members of the Agency Projects team including lived experience researchers from McPin. It addresses some of the factors that make clinical interactions unsuccessful, offering some suggestions for improving clinical communication. The focus is on ensuring that young people are understood and supported at times of crisis, that they are not blamed for the difficulties they face, and that they are not reduced to a diagnostic label.

Chapter 2, Challenging stereotypes about young people who hear voices, is authored by myself, Lisa Bortolotti, Kathleen Murphy-Hollis, Fiona Malpass, and young people from the Voice Collective. It highlights three stereotypes associated with voice hearing that have harmful consequences for young people's relationships and opportunities to thrive, in the family, the school, and the clinic. These are incompetence, dangerousness, and diversity leading to exclusion. The chapter illustrates the impact of these stereotypes based on the young people's experiences, and encourages further empirical research in this area.

Chapter 3, Reacting to demoralization and investigating the experience of dignity in psychosis: reflections from an acute psychiatric ward, authored by a team led by Martino Belvederi Murri, addresses the unique challenges to epistemic justice that emerge in an acute ward, where coercion may be used. The use of coercion may engender situations that are detrimental for individual dignity and morale. One such effect is demoralization, which may increase the risk of suicide. The chapter provides an overview of the work on these topics and offers some suggestions for strategies that might improve the experience of psychiatric inpatient care.

Chapter 4, Not all diagnosis are created equal: Comparing depression and borderline personality disorder diagnoses through the lens of epistemic injustice, authored by Jay Watts, examines four aspects of epistemic injustice: objectification, moral agency, trivialization, and narrative agency. It compares personality disorder and depression, arguably the least and most popular diagnoses with patients in psychiatry. The analysis emphasises the importance of epistemic injustice as a tool in critically evaluating the usefulness of specific psychiatric diagnoses, encouraging a shift in clinical training to embrace reflective practices and restructure power dynamics in clinical encounters. 

Chapter 5, Resisting perceptions of patient untrustworthiness, authored by Eleanor Palafox-Harris, argues that a beneficial therapeutic relationship between patient and clinician requires mutual trust. In order to effectively treat someone, a clinician has to trust the patient’s reports of their symptoms but many psychiatric diagnoses are stereotypically associated with traits that indicate untrustworthiness (such as irrationality). In this chapter Palafox-Harris illustrates how psychiatric labels can signal stereotypes of untrustworthiness, reducing patients' perceived epistemic credibility.

Chapter 6, Preserving dignity and epistemic justice in palliative care for patients with serious mental health problems, with Luigi Grassi as lead author, considers the challenges faced by people with serious mental disorders who are at the end of life and promotes a person-centred approach, which can increase the sense of personal dignity and epistemic justice. Dignity Therapy can be applied in palliative care settings, offering people an opportunity to reflect upon crucial existential and relational issues and prepare their legacy.

Chapter 7, Promoting good living and social health in dementia, with Rabih Chattat as lead author, explores the notion of good living in the case of dementia and highlights the role of social health in preserving wellbeing. Discrimination impacts people with dementia in diagnosis disclosure, advance care planning, and decision making. The chapter critically examines the labelling of the behaviour of people with dementia as problematic and pathological even when it is a reaction to difficulties in communication.

Chapter 8, Ameliorating epistemic injustice with digital health technologies, authored by Elisabetta Lalumera, discusses the potential of digital phenotyping for ameliorating epistemic injustice in mental health. There is a concern that the evidence digital health technologies gather may overshadow individual experiences but, through a fictional case study, Lalumera portrays digital phenotyping as way to support shared decision-making. 

The book aims to help understand how the demands of epistemic justice relate to and complement recent research on agency in youth mental health, person-centred care, dignity therapy, stigmatising diagnoses, good living, social health, and access to digital technologies. As illustrated in the figure below, people seeking help should preserve crucial roles as agents and collaborators with valuable perspectives, multiple interests and needs, the capacity to contribute to positive change, and the capacity for shared decision making.

The mental health patient as an agent

Undermining versus Accepting Young People's Experiences

Laura was brought to the emergency department (ED) by ambulance after a pharmaceutical overdose. Earlier in the assessment, she said she visited her General Practitioner earlier in the day seeking mental health support but she didn't feel she got the support she needed. She reported that she later took a pharmaceutical overdose because she felt very suicidal. The practitioner Laura talks to in the ED  recharacterizes Laura’s experience of suicidal ideation as brief and her act as impulsive. 

What happens in such cases?

In a new open access paper (Bergen et al. 2023), a team of academics and young people with lived experience of mental health services analyse conversations in clinical encounters and observe that people's description of their own experiences is often challenged. These episodes where the practitioner either implies that the patient's report is implausible or undermines it with alleged counter-evidence can be understood within the framework of epistemic injustice. The authors write:

"From a philosophical perspective, applying the concept of epistemic injustice to the clinical encounter enables us to conceptualize the attitude of an epistemically privileged party not as a lack of respect or a failure of empathy (which would not be specific enough) but as an act of injustice toward the party who is epistemically subordinate. The injustice amounts to assigning reduced credibility to a patient’s reports, effectively preventing the perspective of the patient from contributing to shared knowledge and decision making. As epistemic injustice concerns knowledge first and foremost, this does not simply tell us that dismissing a person’s perspective due to prejudice is morally objectionable. Rather, it is problematic from an epistemic point of view because the opportunity to gather knowledge that would benefit both parties and society at large is missed."

 

Clara Bergen

In this table from the paper, we can see that several studies have already gathered evidence of this practice of implying implausibility or undermining the patient's report of their experiences, and that the practice can take several forms:

In the case I started with, one of the five cases examined in the paper, young person Laura's reported intention to kill herself is challenged on numerous occasions, via different strategies: 

1. asking questions that anticipate a compromising response ("And I hear you called the ambulance straight away?"); 
2. asking questions that imply implausibility or inconsistency ("So when you called 111 what did you expect them to do?"); 
3. juxtaposing contrasting information ("You called them so that they could get you help"); 
4. implying information that provides evidence of an alternative characterisation ("So would you say that you took the tablets at the spur of the moment?").

As a result of the encounter, the practitioner concludes that Laura took the tables impulsively and suggests that, if Laura feels suicidal again, she should get support from people she knows or call the Samaritans. The involvement of the rapid response team is deemed unnecessary, and Laura is not referred to mental health services.

Rose McCabe

Future research should explore to what extent recharacterization could be minimized through further communication training or unconscious bias training, and to what extent a long-term solution may lie in increasing accessibility of mental health services for people who self-harm and experience suicidal ideation.