McPin Young People's Network

In this post, Lisa Bortolotti interviews Rachel Kimberley Temple, Public Involvement in Research Manager (Youth Involvement Lead) at the McPin foundation.

Logo of McPin's Young People's Network

LB: Hello Rachel! What is the McPin Young People's Network and what is your role in it?

RKT: Hi Lisa! The young people’s network consists of over 400 young people from across the UK, aged 13-28, who identify as having lived experience of a range of mental health issues. Everyone in the network has signed up because they wish to get actively involved in mental health research. Researchers can contact us and share their youth involvement opportunities with the network. The network is essentially intended as a resource for both young people and researchers who are seeking to work together. 

My role is to manage a small team who oversee the network; raising awareness about it, building membership, and sharing key findings from projects connected to the network. We also collaborate directly with researchers who wish to engage with the network, advising and facilitating youth involvement in their projects.

LB: Why do you think is important that young people are actively involved in mental health research?

RKT: I think it’s vital that young people have a role in research that will directly impact them. By applying their expert knowledge, the research becomes more relevant, accessible and appropriate. This not only improves the quality of the research but also makes it more likely to achieve the desired impact. Research therefore benefits hugely for involving young people.

LB: How do young people benefit from involvement in mental health research?

RKT: Young people we have worked have told us that they value learning new skills and find it empowering to apply their expertise to something that will positively benefit others. I think this is so important, because having mental health issues can make you feel powerless. Therefore, being actively involved in research can offer a sense of control - a feeling like you can make a difference. 

We’ve also been able to see young people grow in the role; becoming more confident, making valuable connections with external partners and building their own careers.

LB: Can you give us an example of a research project you have been involved with, and of what the young people helped achieve?

RKT: One example that comes to mind is the agency project. On this project, we worked with young people and academics to co-analyse video data of young people’s mental health interactions within emergency departments. We drew on our unique perspectives and expertise, and combined this to make some important discoveries: how to maximise young people’s agency in interactions about their mental health. We translated those findings into various resources targeted at professionals, young people and other researchers.

To learn more about the Young People's Network visit their website or follow them on X and Instagram. 

If you are a researcher seeking to involve young people in your project or collaborate with McPin, visit this page. 

McPin Young People's Network has contributed to several outputs for the Agency Project including a podcast called "How to give young people agency in mental health" and a poster entitled "What I wish my younger self knew about mental health" aimed at secondary school students. Check them out!

Logo of the Agency Project

Stigma and dignity in end of life care

The concepts of stigma and dignity are clearly interrelated (Grassi and Chochinov 2024). Self-dignity is the worth, stature, or value that human beings have simply because they are human; and social dignity is the worth, stature, or value that human beings confer upon others by acts of affirmation. What is done to reduce stigma in mental health settings results in an increase of dignity and what facilitates stigma results in a non-dignity experience for patients. 

Dignity is both an intrinsic, self-related process and a reciprocal, extrinsic/interpersonal experience. For instance, an individual’s sense of dignity can be thwarted by positive and negative symptoms of serious mental illness, specifically when these symptoms are misunderstood by others. Dignity can be enhanced if the patient and significant others embrace a recovery-focused relationship where they perceive themselves to be treated as individuals, thus reducing the shame that may be associated with being mentally ill (Skorpen et al. 2015). 

The palliative care context

The existence of disparities in health and healthcare between patients with serious mental illness and patients without a diagnosis of mental illness is evident in end-of-life care. As well as stigma, poverty, lack of family support and social isolation, a number of patient-level factors, such as cognitive impairment, psychiatric disabilities and chronicity, are implicated in end-of-life care among patients with serious mental illness (Grassi et al. 2020).

In one of the first studies conducted in a palliative care setting (Chochinov et al. 2012), Canadian patients with schizophrenia were less likely to see specialists other than psychiatrists and less likely to be prescribed analgesics than a matched cohort without serious mental illness. More recent studies conducted in Australia, Taiwan, Sweden and France confirm that people with serious mental illness are less likely to receive proper palliative care.

Person-centred psychiatry

The purpose of Person Centered Psychiatry, which recognises the patient as a whole person beyond the limits determined by the illness and its symptoms, is to pursue the totality of the patient's health, promote the fulfilment of the patient's life projects, and encourage clinicians to see themselves as full human beings with high ethical standards and work in a collaborative, respectful, and empowering manner with patients (Mezzich et al. 2016).

A series of recommendations have been proposed to improve the quality of palliative care among people with serious mental illness (Callaway et al. 2021): 

• palliative care must be centred on the needs of the person with a therapeutic relationship based on respect, dignity, hope, and non-abandonment;
• people with serious mental illness must have their palliative care needs addressed, such as adequate pain and symptom control, maintenance of function, enhancement of quality of life, support for relationships, and possibility of dying with dignity;
• there is a need for service integration and continuity of care, with interdisciplinary and interspecialty teamwork, communication, and outreach into community agencies and shelters; 
• there is a need for cross-training in palliative care and mental healthcare.

Dignity therapy

Dignity therapy (DT) could represent an important intervention to enhance quality of life in palliative care for people with serious mental illness. Developed by Chochinov, DT is a brief, personalised and empirically based intervention developed for patients with life-threatening or limiting illnesses aiming to have patients talk about things that matter most to them, creating a permanent legacy that helps them strengthen dignity and face their suffering.

 

The protocol consists in 2-3 individual meeting with in which the patient is firstly shown the DT question framework and asked to consider what they might wish to speak about during the session. DT offers the participant an opportunity to reflect upon crucial existential and relational issues, and to review aspects of their lives and of self that they wish to be remembered. 

This process focuses on tasks such as settling relationships, sharing words of love and wisdom with significant others, and preparing a legacy of memories and shared values. About a week later, the DT meeting is carried out and audio-recorded. These meaningful memories, values, words of wisdom, and special messages are transcribed verbatim and then shaped into a narrative through a preliminary editing process. A session is dedicated to the final editing process with the participant, following which they are provided the final written legacy document, to be shared and passed along to family members and beloved ones. 

The ultimate intent of DT is to lessen distress, promote quality of life, validate personhood, alleviate suffering, and give meaning and purpose to life. There are few experiences of applying the DT to the psychiatry settings (see this observational study on depression), but DT appears to increase the sense of hope in patients and to have a role in the patients regaining the sense that life is meaningful. 

In the only DT study intervention available comparing people with serious mental illness and patients with cancer (Grassi et al. 2022), similar themes emerged such as:

• “Meaning” (“vitality", "self-evaluation", "pride", "evolution of self", “support")
• “Resources” (“support”, “resilience”, “family”, “encounters”)
• “Legacy” (“bequest for others”, “time to say”)
• “Dignity”
• “Stigma”.  

There is a need to reframe medicine in a dignity-oriented way, starting by fighting stigma and strengthening the collaboration between mental health and palliative care, with proper training for healthcare professionals as part of an interdisciplinary approach.

Luigi Grassi

This post is by Luigi Grassi, Professor and Chair of Psychiatry, and Director of the Department of Neuroscience and Rehabilitation at the University of Ferrara, Ferrara, Italy. He is also a partner of project EPIC.

Project launch for EPIC!

On Monday 13th May, we celebrated the launch of Project EPIC in Bristol. The launch was held at a beautiful and unique historic venue in Bristol, The Mount Without. We welcomed colleagues from the Universities of Bristol, Nottingham, and Birmingham, as well as representatives from our funder, Wellcome, friends and colleagues from other Universities, doctors, local art therapists and more. 

The evening began with an introductory address from the Principal Investigator, Professor Havi Carel, who introduced the topic of epistemic injustice in healthcare and why it matters. This was followed by short, three-minute snap-shot talks from each of the project's researchers summarising what interests them about the project. 

We heard from Lisa Bortolotti, Matthew Broome, Ian James Kidd, Michael Larkin, Michael Bresalier, Ellie Byrne, Fred Cooper, Dan Degerman and Kathleen Murphy-Hollies on a range of topics, including how epistemic injustice in healthcare relates to intersectionality and wider socio-political structures, phenomenology, emotional dysregulation, self-understanding, loneliness, and silence.

The EPIC project team 

The first part of the evening was closed by the Bristol University Singers, conducted by Elinor Cooper. The choir first sang an excerpt from ‘under the surface’ composed 2015, called ‘We measure time in breath’, followed by 'Bawo Thixo Somandla - Sidumo Nyamezele’ - a protest song widely sung during the apartheid period - and ‘We are’ by Ysaye M Barnwell.

The final of four pieces was composed by Toby Young, with lyrics by Jennifer Thorp. It was commissioned specially for Project EPIC. An excerpt as follows:

    What I keep is vigil

    What I pray is mute

    What I breathe is secret

    What I know is brute

The musical composition will grow as the project progresses, and we can't wait to see what themes emerge from the research that we'll do together.

The University Singers

The remainder of the event was spent networking and mingling with our guests. Bringing together researchers, healthcare practitioners, patients, and their advocates, clearly demonstrated the scope and the potential of the project to better understand, and ameliorate, epistemic injustices in healthcare. 

Recordings of our talks and the musical composition will be made available in due course. 

Watch this space!

Automated epistemic objectification in healthcare

The provision of healthcare is an intrinsically cooperative enterprise in which patients’ active engagement is crucial. It is paramount to recognize the value of patients' epistemic offerings in medical encounters and that their testimony is central to providing healthcare professionals epistemic access to their health state. These are fundamental preconditions to finding the most suitable course of medical action tailored to patients' needs in their singularity. 

However, the ever-growing body of literature tackling epistemic injustice in medicine and healthcare shows that identity prejudices often diminish patients’ credibility, thus hampering their possibility to play their role as epistemic subjects in medical encounters. Often, this leads to misrecognition of patients' epistemic status by, among others, hastily dismissing their testimony as irrelevant, thus leading to epistemic and practical harm. These situations are already highly problematic in healthcare encounters among human patients and physicians.

The introduction of artificial intelligence-based systems, such as machine learning (ML), in medical practice shows that medical care is no longer an exclusively human domain. So, what happens when an ML system, as an allegedly objective epistemic authority and powerful knowledge-generating entity, enters the picture by considerably influencing central medical procedures? As we argue in a recently published paper, we must be wary of ML systems' roles in crucial medical practices, such as providing treatment recommendations and diagnoses. More precisely, we advance the claim that ML systems can epistemically objectify patients in subtle but potentially extremely harmful ways that must be treated in their own right. In fact, these harms are not to be subsumed under other ethical concerns currently receiving extensive attention in the AI Ethics debate. 

Our paper discusses the hypothetical case of an ML system generating a treatment recommendation that goes against a patient's values. In similar situations, the patient is confronted with an unsuitable course of action. We argue that the patient risks being epistemically objectified if the system cannot pick up on their values and produce a new recommendation aligned with their expectations. This is the case because, crucially, when the patient needs to actively provide a piece of information relevant to further course of action, they are prevented from effectively doing so due to the system's setup. The bottom line is that the patient's status in this knowledge-producing endeavor may be degraded to merely being an object of medical action. 

Against these considerations, one could argue that a human physician could simply neutralize the recommendation produced by ML if it goes against the patient's values. However, we see this move as too simplistic for two main reasons. First, physicians may be epistemically dependent on an ML system and de facto unable to override it. Even though this is a surely undesirable scenario, it is recognizable in systems currently deployed. Second, disregarding ML systems' recommendations does not guarantee that physicians can readily find a further, more appropriate course of action. Rather, they might benefit from an ML system supporting their decision-making.

Overall, our general plea in the paper is thus to show the need for a flexible ML epistemology that can incorporate and adapt to newly acquired and ethically relevant information that patients can actively provide. This is key to avoid objectifying patients in morally salient medical interactions. 

Dr. Giorgia Pozzi is a postdoctoral researcher at Delft University of Technology (The Netherlands), working on the intersection between the ethics and epistemology of artificial intelligence (AI) in medicine and healthcare. She has a particular interest in tackling forms of epistemic injustice emerging due to the integration of AI systems in medical practice.

Stereotypes about young people who hear voices

Negative stereotypes associated with people who report unusual experiences and beliefs cause lasting harm and often undermine agency. In a series of workshops with the young people of the Voice Collective, facilitated by Fiona Malpass (Mind in Camden) and designed by Lisa Bortolotti and Kathleen Murphy-Hollis, we discussed the challenges that hearing voices poses for young people, at home, at school, and in healthcare settings.

The result of our conversations was a script created by the young people who participated in the workshops, where they described three forms of negative stereotyping that cause harm: 

• perceived dangerousness, leading to the thought that the young person poses a threat; 
• perceived lack of capacity or incompetence, leading to the thought that the young people cannot achieve anything valuable or challenging; 
• perceived difference or weakness, leading to social exclusion.

The script was turned into an animated video, produced by Squideo (click below to watch).

Snake or dangerousness

Snake

Perceived dangerousness is represented by Snake, who does not really pose a threat to humans but is feared and kept at a distance. Contrary to popular belief, most snakes are neither venomous nor dangerous. Snakes defend themselves if someone disturbs or attacks them but are not aggressive towards humans. Yet, many people make assumptions about their being dangerous. So, Snake in the video is right that his bad reputation is undeserved.

Butterfly or incompetence

Butterfly

Perceived lack of capacity is represented by Butterfly. Although she is an active pollinator contributing to the life of the garden, Bee teases her and suggests that she is lazy and useless, based on her past as a caterpillar, when she was seen eating all day long. Seeing a chewed leaf might make us think that caterpillars are good for nothing but destroying plants. However, caterpillars are actually very important to their environment even before they become pollinators. They prevent vegetation from growing too quickly and depleting nutrients in the soil. So Bee's attitude towards caterpillars and butterflies in our video is unjustified.

Wolf or exclusion

Wolf

Perceived difference or weakness is represented by Wolf. Wolf got an injury and because of that he was left behind by his pack. The other wolves assumed he would be a burden, unable to keep up and hunt for himself. But there is no reason that his small, temporary injury would have made his contributions to the pack less valuable in the long term. He would have probably needed some support until the injury was healed, and then he would have been in a position to run and hunt as fast as the other members of the pack.

A safe space

Snake, Wolf and Butterfly in the clearing

Being treated as dangerous for no good reason, being considered as a burden and nothing else, and being excluded by shared decision-making, are all harmful (and sadly common) experiences for young people who hear voices. Young people struggling with their mental health have a lot to contribute and with some support they can continue to pursue the projects that are important to them.

In the video, Snake, Wolf and Butterfly meet in the clearing to share their experiences and support each other. What happens in the clearing, sharing experiences in an environment that is safe and non-judgemental, is what happens in the Voice Collective. Young people who hear voices and have other unusual experiences or beliefs come together and connect with people who are in a similar situation. 

The video is an invitation to go beyond the stereotypes and see the person, not the label. To learn more about myths and truths about hearing voices, visit The Voice Collective website.

You find The Wolf, the Snake and the Butterfly and other animated videos introducing philosophical issues in The Philosophy Garden, a virtual philosophy museum gathering and producing resources for young people, educators, and the general public. 

The Philosophy Garden is a project run by EPIC co-investigator Lisa Bortolotti, with the collaboration of Kathleen Murphy-Hollies, Anna Ichino, and Fer Zambra.