After a brief overview of tardive dyskinesia, this targeted narrative review will examine the psychosocial consequences of tardive dyskinesia on patients’ daily lives, including stigma, social withdrawal, and quality of life, as well as impact on physical functioning. The extant literature on the impact of tardive dyskinesia on patients and their caregivers is described and summarized, including how patients with tardive dyskinesia perceive the severity and impact of their motor symptoms and whether this aligns with clinical observations by their treaters.

This Editorial introduces the Special Issue of the Irish Journal of Psychological Medicine focused on the evolution, implementation, and critique of the recovery approach in mental health. Tracing its roots to the 19th-century writings of John Perceval, a pioneer in lived experience advocacy, we outline how the recovery approach has grown into a global movement grounded in human rights, agency, and systemic transformation. We define the recovery approach and outline its values of shared humanity, justice, equality, respect, and compassion. We then discuss both the global progress made (including advances in peer support, Recovery Colleges, and coproduction in research, policy, and service development) and the significant challenges faced (ranging from tokenism and epistemic inequality to professionalisation and systemic resistance). The Editorial also explores tensions such as ‘neorecovery’, clinician uncertainty, and the co-optation of lived experience roles. We then provide a brief overview of the diverse contributions that comprise the Special Issue. Rather than romanticising the potential of lived experience integration, or celebrating marginal successes, we argue that, as a whole, this scholarly body of work illuminates pathways to mental health system reform and transformative change. These contributions help us inch closer to the promised revolution, a mental health system that has its foundations in equally valued clinical expertise, scientific rigour, and lived experience knowledge. Such a system would assist people that encounter psychological distress and mental illness, in all its forms, to not only heal but overcome, transcend, and flourish beyond suffering.

When returning to their communities after incarceration, individuals face elevated rates of mortality and other poor health outcomes. The reentry period provides a critical opportunity for interventions to improve health, but, historically, a prohibition on federal Medicaid coverage during incarceration has created barriers to care after release. To address these barriers, many states have applied for Medicaid section 1115 reentry waivers to expand access to Medicaid coverage for certain pre- and post-release services. These waivers present an important opportunity to improve care access during reentry, but, if driven by carceral entities, they run the risk of replicating carceral systems that harm health. This article advocates for an alternative approach: centering the perspectives of people with lived experience of incarceration in all aspects of waiver design, implementation, and evaluation. Drawing on personal and professional experience, the authors explore the value of centering lived experience in health policy and identify successes, challenges, and lessons learned from California’s waiver. This article also explores the importance of centering lived experience in information sharing and privacy practices in waiver implementation. Across these areas, waivers driven by lived experience can promote dignity, autonomy, and wellbeing, dismantling carceral approaches that reinforce stigma, erode trust, and perpetuate inequities.

This article explores violent extremism (VE) through an embodied, bottom-up lens, using body-mapping with Muslim women in Kenya. Drawing on two selected body maps, we critically interrogate the use of VE is as a framework for analysing the harm experienced by women. Our participants used the terminology of VE to refer to not only Al-Shabaab–related violence but also gender-based violence, gang violence, and state violence. These insights highlight a key tension in critical scholarship on VE: while often critiqued from a distance, VE is actively reappropriated by those most affected. We argue that, as a community disproportionately targeted by countering violent extremism (CVE) initiatives, our participants employed the language of VE as a form of adaptive resistance – challenging both the violent policing of CVE and the patriarchal violence embedded in their daily lives. This article contributes to feminist decolonial critiques of VE by centring the voices of those most impacted, and by questioning critiques that overlook lived experiences. Additionally, by sharing our arts-based methodology, we contribute to emerging literature on decolonial research practices. Finally, we raise critical questions about the intersections of gender-based violence, gang violence, state violence, and VE in Kenya and beyond.

This commentary discusses research workforce programs designed to enhance the representation and engagement of Latinos in HIV research, highlighting key challenges and proposing actionable strategies for improvement. Mentorship education and cultural inclusivity are identified as the most salient issues because the former leads to stronger health-related outcomes and is linked to cognitive-and career-related factors while the latter offers the potential to directly dismantle structures of inequity. This commentary suggests recasting of Diversity, Equity, and Inclusion (DEI) initiatives from eligibility as Latino self-identification, to all individuals’ lived experiences and/or prior experience in service/research activities. Some issues and constructs (i.e., heterogeneity, perseverance, acculturation, cultural values), typically important for certain underrepresented minoritized groups in diversity workforce programs, are reinterpreted for their relevance to all potential participants. This commentary proposes a holistic approach to trainee eligibility, creating a more inclusive environment that respects both individuality and diversity, and, importantly, contributing to DEI does not require being a member of an underrepresented minoritized population group.

This Perspective article addresses the issue of recovery in mental health research, policy and practice from a service user/survivor perspective. In doing so, it brings to bear a fundamentally different viewpoint to that which has dominated psychiatric history, one based on lived experience rather than the ideological allegiances of its founders. The article addresses the modern history of Western mental health provision, its over dependence on medicalised individual understandings of wellbeing, the limitations this has imposed and the challenges it has been subjected to. The issue of recovery is examined in its historical context, exploring its strengths and weaknesses. The latter weaknesses have been magnified by the association of recovery by different governments, nationally and internationally, with pressing mental health service users and others experiencing distress into employment; this is often poor quality and unsupported employment. The article puts this in the broader context of a number of values and principles underpinning both the developing psychiatric system survivor movement and the emerging international interest in Mad Studies. In doing so, the article offers a basis for the radical reform of both understandings of madness and mental distress, recognition of their holistic relations and more helpful routes to offering support and engaging with the lived experience and experiential knowledge of mental health service users.

The value of people’s unique lived experience of mental illness (including psychosis), professional treatment and recovery as a valid form of knowledge remains relatively unexplored and under-utilised by mental health professionals, policy makers and by those seeking help. Mutual peer support remains a largely untapped resource, often ignored and distanced from mainstream services. In this reflective perspective article, I share my own experiences as a service user, spouse, close relative and brother-in-law and also as someone who worked for many years in mutual peer support and in the area of recovery. I reflect on the findings of my doctoral narrative research which focused on the role played by Grow Mental Health, Ireland’s largest network of mutual peer support groups, in recovery from a wide range of diagnoses. The main finding from this research suggested that recovery can be experienced as a re-enchantment with life and that mental illness can act as a gateway to mental health rather than be experienced as a form of (often life-long) disability. In the discussion I try and envisage what a recovery oriented mental health system might look like, and what changes would need to be introduced. Despite such a long personal history of dealing with mental illness and witnessing many different levels of recovery, I still have much to learn about mental illness and recovery. I also welcome many recent changes made within the system and indeed this special edition of the journal.

As assisted dying moves towards legalisation, it is imperative that research be undertaken to inform eligibility and ensure that proper safeguards are instituted. To achieve a meaningful understanding of physician-assisted suicide, such research must draw on professionals with a wide range of expertise and include people with lived experience.

Hidradenitis suppurativa (HS) is a chronic, painful inflammatory skin disease affecting 0.1% of the US population. Limited understanding of HS biology and ineffective treatments leave patients dissatisfied, facing misdiagnosis, and diagnostic delays. To address these challenges, the Rockefeller University Center for Clinical Translational Science, Clinical Directors Network, and the HS Foundation launched an initiative to foster engagement among stakeholders. Three full spectrum town halls (FSTH) were designed to engage patients, scientists, and clinicians bidirectionally. Topics spanned the translational research spectrum to amplify patient testimony, update the HS community on scientific and clinical research advances, and promote patient-centered research and care. The FSTH model aims to enhance empathy, foster trust, accelerate scientific discovery, and improve care. FSTH-2018 showcased patients’ experiences living with HS, the scientific and clinical state of the art, and tailored a new HS study to patient preferences. FSTH-2021 shared results of the study, including new insights into HS biology. FSTH-2023 highlighted best practices for outpatient surgical care of HS. Participant feedback underscored FSTH’s role in nurturing empathy and advancing discovery and patient engagement. FSTH serves as an effective model for uniting stakeholders, bridging gaps in knowledge and trust, and accelerating translational research to improve HS care.

Delphi studies allow for the generation of a consensus among experts. This has historically been professional experts in their field. This study aimed to obtain a consensus regarding the most important components of cognitive behavioural therapy (CBT) for depression not only for professional experts (therapists) but also for adult experts by experience. Perceptions of importance between therapists and experts by experience differed in multiple areas including content components such as behavioural activation and experiments, psychoeducation, and homework, which the latter did not agree were important. Experts by experience found several components relating to delivery process important which therapists did not, such as delivery method and session length. The strongest agreement from both groups involved the importance of positive therapist factors such as being non-judgemental, knowledgeable, understanding, and trustworthy. Both groups were in agreement on the importance of cognitive restructuring. Neither experts by experience nor therapists met consensus agreement on the inclusion of mindfulness as part of a wider CBT intervention for depression, being rated among the lowest components for both groups. Findings highlight several aspects of CBT content and delivery which may benefit from review in order to increase acceptability for recipients.

Key learning aims

1. (1) To identify what recipients and deliverers feel are the most important parts of a CBT intervention for depression.

2. (2) To compare these responses, and consider reasons why these similarities and differences may exist.

3. (3) To discuss ways in which these differences could impact acceptability and perceived efficacy of cognitive behavioural therapy.

4. (4) To reflect on ways gained knowledge could be used to consider ways to improve the delivery of cognitive behavioural therapy.