Working at the intersections of mental health, physical health and neurodiversity
Projects
SENSS PhD Studentship - Valeria Khudiakova - Intersectionality and identity: Gender identity and ethnicity in autism and personality disorder
City St George’s Lead: Dr Jacqueline Sin and Dr Kirsten Barnicot
Funder: ESRC Economic and Social Research Council, £70,493.25
Duration: October 2024 to March 2028
This PhD explores intersectional inequities in access to diagnosis for autistic people and people diagnosed with borderline personality disorder (BPD). There is significant overlap between autistic traits and experiences associated with BPD, and BPD is a particularly common (mis)diagnosis in adult diagnosed autistic people. Receiving an accurate diagnosis is vital not only for accessing appropriate support services but also for making sense of one's experiences and identity. However, some research suggests that misdiagnosis may be more common in autistic people who are ethnic minorities and/or gender-diverse, which represents a social justice issue. These groups often experience biases in diagnosis, in addition to accessing appropriate and culturally sensitive pre- and post-diagnosis supports. While many autistic people derive a positive sense of identity and a sense of community from being autistic, the scarce research that exists on identity formation in BPD suggests that narratives of label rejection and recovery are very common, which is in stark contrast to how some autistic people construct their identity. The lack of research on individual and collective identity in BPD also represents a form of epistemic injustice, as identity disturbance is assumed to be a key characteristic symptom of BPD and those with that label are frequently said to be unreliable narrators. This PhD takes a mixed-methods approach to address the dearth of research into the diagnostic trajectories of people labelled with BPD who receive an autism diagnosis as well as intersectional identity construction in autistic people and people with PD.
Group body oriented psychological therapy for the treatment of complex PTSD: a feasibility study utilising a manualised treatment protocol
City St George’s Lead: Professor Steve Gillard
Funder: City St George’s, University of London, £12,478.03
Duration: May 2024 to April 2025
People suffering from the consequences of significant trauma in their life, and who have been diagnosed with complex post-traumatic stress disorder (cPTSD), experience significant problems with managing their emotions and often display a range of physical symptoms such as pain and numbness, and self-harm and suicidal behaviours. Up to 50% of these people do not significantly improve following standard treatments such as trauma-focused talking therapies.
As many of the core symptoms of complex trauma are experienced in the body, this study aims to ascertain if group Body Oriented Psychological Therapy (BOPT), an innovative therapeutic intervention, is feasible, acceptable and has the potential to impact on trauma symptoms including PTSD, quality of life and physical health.
The study will take place in two NHS Trusts, both with specialist trauma services. Twenty participants (10 from each Trust), diagnosed with cPTSD, will be invited from the trauma therapy waiting lists. Participants will be offered 40 sessions of group BOPT and assessed before and after therapy using a range of standardised questionnaires. Rates of participation in therapy sessions will be recorded and qualitative interviews with participants and therapists will explore experience and acceptability of the intervention, and adherence to and utility of the manual.
Reducing risk of cardiovascular disease in people with severe mental illness: development, piloting and trial of a peer supported group clinic intervention (PEGASUS)
City St George’s Lead: Professor Steve Gillard and Dr Jacqueline Sin
Funder: NIHR / DHSC Department of Health and Social Care, £2,499,925.59
Duration: October 2023 to September 2028
Cardiovascular disease (CVD), including heart disease, is a major cause of death. We aim to reduce risk of CVD in people with a severe mental illness (SMI) such as schizophrenia or bipolar disorder. People with SMI can die 15-20 years younger than the general population, with CVD the biggest cause of early death. People from Black and minority ethnic communities can be affected by increased rates of both SMI and CVD.
Healthy lifestyle programmes can reduce risk of CVD in the general population. Research testing these approaches with people with SMI has had very little success. People with SMI can experience weight gain from anti-psychotic medication, social isolation and poor coordination between mental and physical health services.
We propose developing an approach to reducing CVD risk specially tailored for people with SMI. A group clinic, co-facilitated by a mental health nurse and a peer worker, will include exercise and diet advice from healthcare professionals. Psychiatric medication will be monitored and reviewed. Peer workers will also offer one-to-one peer support, bringing role-modelling to self-management support and aiming to reduce social isolation.
We will review current research about lifestyle support for people with SMI and hold focus groups exploring people’s experiences of support for their physical health. We will work with peer workers, healthcare professionals and people with SMI to coproduce the content and structure of peer-supported group clinics.
We will train peer workers and mental health nurses and run group clinics for 10 people in each of three mental health NHS Trusts. We will interview people attending the groups, peer workers and professionals to find out how things worked and what might be improved.
We will conduct a randomised controlled trial of peer-supported group clinics in the three Trusts. Two-hundred people at risk of CVD will be allocated to group clinics while another 200 will be offered written lifestyle advice. One year later we will compare participants’ risk of CVD by assessing risk indicators including cholesterol and blood pressure. We will use questionnaires to measure empowerment and social networks and in-depth interviews to understand how support worked. We will record the services people use to assess whether peer-supported groups offer value for money.
Two team members have extensive experience of supporting PPI in research and helped shape the proposal. A lived experience advisory group of people with SMI and physical health issues will coproduce the peer-supported groups and help develop interviews and make sense of the information we collect.
We will share our findings through academic papers and conferences, clinical networks and social media. We will work with charities and patient groups to reach a wide audience. We will work with Applied Research Collaborations to help put our research into practice.
A systematic review and narrative synthesis of body and movement-oriented therapies for the treatment of eating disorders
City St George’s Lead: Dr Grace Lucas
Funder: City St George’s, University of London, £12,128.99
Duration: June 2022 to October 2023
People with eating disorders often experience disturbances of body experience across the domains of cognition, affect and perception. Some body-oriented therapies (BOT) – body-oriented psychological therapies (BOPT) and holistic body-oriented therapies (HBOT) – aim to improve mind-body connection and body experience and help people feel differently about managing their eating behaviours. This review aimed to identify and describe these BOT for eating disorders, investigate their effects and explore patients’ experiences.
Find out more here: https://doi.org/10.1016/j.ctcp.2025.101997
Improving recognition, understanding and differentiation of autism and personality disorder: A mixed-methods lived experience study (I-RAP)
City St George's Lead: Dr Kirsten Barnicot (CI) and Jennie Parker (CI)
Team: Elissa Doel, Eloise Stark, Rose McCabe, Will Mandy
Funder: The McPin Foundation (Words That Carry On) and City St George's, University of London, £110, 042
Duration: October 2021 to September 2024
People diagnosed with personality disorder can often be marginalised within health services. People with lived experience and clinicians say that autism may be missed or misdiagnosed in some people diagnosed with personality disorder, particularly in people identifying as female or assigned female gender at birth, and that this can cause serious harm through people being misunderstood, feeling unheard, and being offered inappropriate and inadequate support.
Using a co-production model, we will first conduct in-depth qualitative and cognitive interviews with women with a personality disorder, autistic women, women who have both sets of experiences, and clinicians, to explore their perspectives on: (1) Similarities and differences in lived emotional, behavioural, cognitive, identity and interpersonal experiences; (2) Limitations of current assessment tools in evaluating and distinguishing autistic traits in women diagnosed with a personality disorder; and 3) Facilitators and barriers to seeking and gaining a diagnosis of autism.
We will then draw on the qualitative findings to test quantitative hypotheses about the best ways to assess and differentiate autism and personality disorder. We will generate a set of key dos and don’ts that clinicians can use when considering autism as an alternative or additional explanation for the experiences of a person currently diagnosed with a personality disorder. We will identify a set of distinguishing features that clinicians can use to differentiate autism from personality disorder in women, as well as identifying shared features that are not useful for making this distinction.
Find out more here: "Improving Recognition and Understanding of Autism and Personality Disorder – Homepage | I-RAP”
Development and randomised feasibility trial of a theory-based digital behaviour change intervention to support self-management for people with Adrenal Insufficiency (Support-AI)
City St George's Lead: Dr Sofia Llahana (CI)
Team: Ashley Grossman, Christine Norton, Kathleen Mulligan, Shashi Hirani, Stanton Newman, Stephanie Baldeweg,
Funder: NIHR HEE/ICA Post-doctoral Clinical Lectureship, £543,913
Duration: September 2021 to August 2024
Adrenal insufficiency is a chronic condition. People living with adrenal insufficiency require lifelong glucocorticoid replacement treatment, and need to adjust the dose of this treatment during illness or stressful events and an emergency hydrocortisone injections during an adrenal crisis. These crises are life-threatening, with many patients requiring hospital care each year for events that could often be prevented. Effective self-management is therefore vital and includes taking medicines as prescribed, following “sick day rules,” monitoring symptoms, and being prepared to use an emergency injection. However, current education and support for patients are not always effective in helping them adopt and maintain these behaviours.
This research aims to better understand the challenges and supports that influence self-management for people with adrenal insufficiency and to develop a digital programme, called Support AI, to help address these needs. The study is being carried out in two phases. First, interviews and a survey with patients will identify the key barriers and enablers to managing adrenal insufficiency. Then, working with patients, clinicians, and other experts, the team will design and refine the Support AI website using evidence-based behaviour change methods. The goal is to create an engaging and practical tool that reduces preventable hospitalisations, improves quality of life, and makes healthcare delivery more cost-effective.