Rosiel Elwyn

Background
Self-harm and suicidal behaviours in children are growing public health issues, however, have received comparatively less attention and research than in other age groups. This gap highlights the need for effective ways to identify and assess these behaviours in children aged 12 years and under to support prevention and intervention efforts.

Objective
This study describes the co-design development of an innovative assessment tool - the Codesigned Assessment Tool of Child Self-Harm and Suicidal Behaviours (CATCH-HARMS) - designed to identify and assess self-harm and suicidal behaviours in children aged 12 years and under.

Methods
We co-designed an assessment tool that seeks to identify, assess and understand early indicators, experiences and related factors behind self-harm and suicidal behaviours in children. Adults in the group consisted of those with lived experience (LE) of self-harm/suicidal behaviour from their own childhood (<12 years of age), parents/carers of children with LE of childhood self-harm and suicidal behaviours and clinicians/academics with expertise in developmental and clinical psychology.

Outcome
A novel 28-item tool was developed to assess child self-harm and suicidal behaviours, to inform early intervention. The co-design process increased capacity for creative solutions and supports practical utility and acceptance of the assessment in real-world contexts.

Background
Eating disorders can result in inpatient admissions. The transition of care between this tier of service and outpatient support can be challenging, particularly without intensive outpatient options. The potential benefits of providing intensive outpatient options during this transition period are significant, however there is limited research in this area. This study aimed to understand the experiences and needs of persons with lived experience, carers and health professionals before and after this transition in care for adults in Australia.

Methods
Using mixed quantitative and qualitative methodology, and experience based co-design principles and processes, we gathered individual experience (stage 1) and developed an understanding of the care transition (stage 2). In stage 1, persons with lived experience and carers were interviewed. Health professionals were surveyed using an online questionnaire. In stage 2, preferences for support were explored in workshops. Findings were analysed using descriptive statistics (quantitative data) and inductive content analysis (qualitative data).

Results
Stage 1: Five persons with lived experience and six carers were interviewed. Seventy-three health professionals completed the questionnaire. Stage 2: Two persons with lived experience, two carers and three health professionals participated in workshops. Given the small sample sizes, findings should be interpreted as exploratory. We identified three themes in stage 1: (1) Eating disorder care has the potential to be disempowering, traumatic and isolating but can also be motivating and hopeful, (2) Inpatient care does not always prepare patients for success prior to discharging, (3) Transitioning into outpatient care has the potential to be inequitable, expensive or non-existent. Preferred priority areas for improvement (stage 2) included individualised holistic and empathetic care, practical and timely post-discharge support, additional supportive networks, cultural change in healthcare, workforce training and development, and consistency in service offerings and equity of access.

Conclusions
The return home from inpatient care can be difficult to navigate, marked by a lack of continuity of care and insufficient resources. This research highlights areas to target in co-designing a support system for adult patients with eating disorders after discharge from inpatient care.

Background
Eating disorders (ED) and psychosis/psychotic-spectrum disorders (PSD) have overlapping symptoms and may co-occur in a variety of presentations. Due to its debilitating and life-threatening risk, it is important for clinicians to be aware of how catatonia may present within these co-occurrences.

Method
A narrative review was conducted of catatonic presentations in individuals with co-occurring EDs and psychosis, using the databases Google Scholar, ScienceDirect, PubMed, ProQuest and PsychInfo.

Results
This article reviews and summarises the 10 cases found in the literature, and explores critical considerations within ED-psychosis co-occurrence, including the author's lived experience insight into experiencing catatonia within co-occurring ED-psychosis. In 9 out of 10 cases, catatonia occurred during adolescence (ages 13–24). Fifty percent of cases involved stressful or traumatic events as a precipitant to catatonia emergence. Autistic individuals with EDs may be particularly vulnerable to catatonic symptoms. In most cases, catatonic symptoms responded to lorazepam treatment or a combination of lorazepam and other medications such as antipsychotics, although tube-feeding was also required in some cases.

Conclusion
This review discusses key factors and intersections that are highly relevant to individuals vulnerable to EDs and psychosis (i.e., malnutrition, trauma, autism, bipolar disorder, OCD). Catatonic symptoms may be mistaken for ED symptoms, delaying early treatment in individuals with ED. Consideration of catatonic presentations and trauma-informed and neurodivergent-affirming treatment practices are recommended.

This guide provides an overview of key considerations for navigating researcher lived experience. It introduces the concept of lived experience in research, outlines common risks and challenges, highlights possibilities and benefits, and offers some practical tools to support researchers with lived experience in their work. While the focus is primarily on lived experience in the context of mental health research, the themes and strategies discussed are likely relevant across diverse lived experience research contexts. The guide does not prescribe a single path, as the journeys of lived experience researchers vary widely. Instead, it highlights key areas for consideration to prompt reflection, especially for those new to the field. This guide will explore questions such as: How accommodating is my workplace to people with lived experience, and how do I work within that context? Should I share my lived experience, and what impact might that have? What helps me stay well and feel safe in this work? How can connecting with peers, mentors, or communities support me—and how might I give back? By exploring these types of questions, it is our hope that this guide can support those with lived experience to chart their own course into and through research in ways that foster safety, well-being, empowerment, equity, and personal and collective growth, and that affirm the vital place of people with lived experience in shaping knowledge through research.

Across medical and mental health research, lived experience (LE) collaboration and partnership is increasingly being prioritised and embedded into research methods and considered as an essential ethical approach. In eating disorder (ED) research, however, LE involvement is still emerging, and ED researchers have identified a need for guidance on ethical collaboration with people with LE. Written by a team of LE researchers and advocates, this article outlines core principles for ethical and meaningful partnership for people with ED in research, including: (1) Recognise lived experience as expertise, (2) Share power and decision-making, (3) Support autonomy, readiness, and dignity of risk, (4) Clarify roles, expectations, and disclosure choices, (5) Provide fair remuneration, authorship, and recognition, (6) Build emotionally safe and sustainable ways of working, (7) Practice reflexivity and transparency, (8) Ensure mutual benefit and capacity building. Conceptual clarification is also provided regarding types of LE involvement in ED research, with examples (LE-led research, co-production, co-design, consultation). Using the core principles, practical guidance is provided for clarifying roles and expectations, supporting disclosure choices, planning remuneration and authorship, developing emotionally safe ways of working, and addressing institutional barriers to meaningful partnership. This article aims to support the ED research community in shared learning and growth opportunities for ethical collaboration with people with LE in ED research.

What you need to know
Suicidal ideation is defined as thoughts, considerations, or plans surrounding suicide
Psychiatric diagnoses, younger and older age, female sex, physical disabilities, and marginalised status are risk factors
No clinical guidelines suggest universal screening for suicidal ideation; however screening at-risk populations is recommended
Cognitive behavioural therapy shows the strongest evidence for treatment of suicidal ideation

Eating disorders (EDs) are complex conditions that significantly affect quality of life and often co-occur with other medical and psychiatric diagnoses. Anorexia Nervosa (AN), a severe ED, involves multiple aetiological factors—genetic, metabolic, neurocognitive, psychological, and socio-cultural—and is characterised by disturbances in eating, appetite, and food intake (including low food intake and behaviours that disrupt digestion such as purging), body image disturbance, malnutrition and low body weight, and high risks of co-occurring conditions, medical complications, and mortality. This thesis centres Lived Experience (LE) perspectives to explore ED understandings, highlighting nuances in treatment and recovery. The first two papers focus on conceptual and ethical factors in understanding of illness staging and recovery in AN, using lived experience perspectives and autoethnography. The third and fourth papers focus on the contribution of trauma to AN aetiology, and trauma as a maintaining factor. The third paper uses lived experience collective autoethnography and thematic analysis to explore comprehensive factors related to the discordant development of AN in twins, such as differing levels of early life stress and trauma exposure. The fourth paper is a poetic mediation as a lived experience method, which highlights how trauma may be unaddressed in AN treatment, and how ED treatment may be traumatic itself, compounding trauma-AN interrelationships and illness severity. Building on lived experience methods and the contributions of trauma to AN aetiology, the fifth and sixth chapters centre on AN neurobiology, with a focus on trauma, and its impact on key neurobiological functions, including the gut microbiome, and glutamatergic system. The fifth paper, a systematic review, examines shared and unique microbial taxa that may characterise or contribute to AN with or without exposure to adversity and/or PTSD. The sixth chapter is an exploratory case series of young women with AN and trauma exposure (SIGNET pilot study). The study examines the neurobiological and mental health factors related to AN, including their gut microbiome profiles, metabolic glutamatergic biosynthesis pathways, cognitive function, suicidality, interoception, levels of trauma exposure, and ED severity. The seventh and eighth papers focus on the need for personalised treatment and treatment innovation. The seventh paper explores the need for trauma-responsive, integrated treatment for longstanding AN and co-occurring conditions (i.e., psychosis). Using a lived experience-authored case study, this article emphasises how PTSD and complex PTSD can interact with AN symptoms and symptoms of co-occurring conditions. The final paper is a narrative review that presents the theory for a novel, neurobiologically informed treatment for AN involving ketamine and zinc. This treatment is proposed for individuals with trauma-associated AN who may not have responded to first-line treatments and may have a longstanding illness duration, with implications for the gut microbiome as a key factor in treatment response. Together, this thesis addresses multiple gaps in ED research, particularly in conceptualisation and understanding of longstanding AN, its aetiology and phenomenology, and the contributions of trauma. It integrates lived experience phenomenology and methods to advance conceptual understanding of AN (i.e., illness staging and recovery) and neurobiology (i.e., trauma, treatment non-response). Using multiple approaches, this work examines several key constructs important to longstanding AN phenomenology and neurobiology, including conceptualisations and ethics of prognosis, treatment non-response, and terminality, the
impact of trauma on AN aetiology and treatment non-response, the contribution of iatrogenic harm to compounded trauma and treatment experiences, the role of the gut microbiome as a mechanism in AN and trauma symptoms, the critical need for lived experience knowledge to advance ED research, and the need for integrated, trauma-responsive, personalised treatment.

Background
Eating disorders (EDs) are increasingly recognised among neurodivergent and transgender and gender diverse (TGD) individuals, yet most assessment and treatment models remain grounded in cisnormative and neuronormative assumptions and frameworks. Sensory processing, spanning interoception and exteroception, has been proposed as a potential factor that may help explain observed associations between neurodivergent traits, gender incongruence, and EDs. Empirical evidence, however, remains limited. This study examined whether sensory processing characteristics accounted for variance in observed associations between neurodivergent traits (with a focus on Autism and attention deficit/hyperactivity disorder, ADHD), gender incongruence, and ED symptoms in an adult community sample.

Methods
Participants (N = 195) completed an online Qualtrics survey involving validated self-report measures of exteroception, interoceptive sensibility, gender congruence, and ED symptoms (for example, Eating Disorder Examination Questionnaire Short, EDE-QS and Nine Item Avoidant or Restrictive Food Intake Disorder Screener, NIAS). Correlation, regression, and effects analyses were used to explore associations among self-reported neurodivergent traits, gender incongruence, sensory processing, and ED symptoms.

Results
Gender incongruence and Autistic traits showed positive associations with restrictive and avoidant ED symptoms. ADHD traits showed positive associations with a broader range of ED symptoms, including restrictive, avoidant, and binge eating presentations. Gender incongruence also showed positive associations with sensory processing differences across both exteroceptive and interoceptive domains: namely, elevated visual and auditory sensitivity and reduced body trust. Furthermore, interoceptive sensibility, particularly lower body trust, showed significant statistical relations with ADHD motor traits and EDE-QS scores. Interoceptive sensibility also showed significant statistical relations in models including gender incongruence and EDE-QS scores. Exteroceptive hypersensitivity showed a partial statistical relation in models examining gender incongruence and NIAS scores.

Conclusions
To the authors’ knowledge, this study provides the first lived experience-led empirical intersectional investigation linking interoception and exteroception with neurodivergent traits, gender incongruence, and ED symptoms. Results highlight the relevance of intersectional, sensory-informed, and identity-affirming perspectives for future research and the ongoing development of ED assessment and care.

Objective
The importance of including people with a lived experience (LE) of eating disorders (ED) in the development and conduct of research is being recognised for the value it brings to the field. While the risks and benefits are beginning to be understood, there is still a lack of clarity around how to support LE partners through the process. This study examined perspectives on LE collaboration in ED research from individuals with personal LE, carers, clinicians, and researchers.

Methods
An online survey yielded 122 participants: 71 with personal LE, 37 carers, 21 clinicians, and 18 researchers.

Results
While researchers generally supported LE collaboration, carers were more hesitant. Across groups, the main perceived benefit was producing more meaningful research and improved treatments, while the primary concern was the risk of relapse for LE contributors. Views varied on the appropriate illness stage for LE involvement, though most agreed that readiness should be assessed collaboratively. Researchers strongly endorsed the development of ED-specific guidelines for LE engagement.

Conclusions
Overall, each of the groups valued LE input but identified a need for clearer guidance on safe and effective collaboration.

Engaging people who have lived experience (LE) of a topic of enquiry increases the efficacy, integrity and robustness of research. This group bring improvements to all kinds of research, including systematic reviews. This paper is a shared reflection on the process of conducting a systematic literature review as a team including people living with mental and physical health concerns (with and without a research background) and researchers. We met several times to discuss the key aspects that made our shared work together successful, and identified key themes that we agreed were reflective of our shared experience. Reflecting on the process of the systematic review led the authors to identify the following themes as important areas of consideration when researchers and LE experts work in partnership: development and execution of meaningful partnership, skills development, decision making, academic guidelines, and history of gatekeeping of LE leadership. These themes speak to the necessity of power-sharing and interpersonal skills in the effective conduct of the co-designed systematic review. Academic guidelines regarding research methods (i.e. systematic literature reviews) may serve to replicate the existing power dynamics in research—prioritising research knowledge over lived experience perspectives. Researchers wanting to engage with people with lived experience must maintain reflexivity and flexibility in how they approach research, including in how decisions are made, to ensure that the engagement of lived experience experts is meaningful and transparent.