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This article describes a Patient and Public Involvement (PPI) led creative workshop space held within a clinical trial of a talking therapy for distressing voices (AVATAR2). PPI adds significant value to clinical research and ensures the work is meaningful to patients and their supporters. However, known issues include tokenism, a common power imbalance between PPI colleagues and researchers and a lack of opportunity for PPI to shape the research. PPI has played a key role at all stages of the AVATAR2 trial, including design, recruitment of staff and participants, data collection, analysis, and dissemination. An active and creative group of people was established, with over 30 members flexibly involved across all four sites. PPI group members were from diverse backgrounds, with lived experience of mental health conditions and recovery, and including carers . During this work, PPI colleagues identified that they would value a creative space which would help to promote the study but extend beyond an exclusive focus on trial deliverables. A regular creative workshop was established to support PPI colleagues in their creative work, including material such as poetry, blogs, art and podcasts. PPI colleagues and trial staff have cowritten a reflective piece to share their experiences on the impact of the creative workshops, organised into four themes. We found the workshops to be a powerful tool for forging relationships among trial staff and PPI colleagues, while also fostering personal development. We reflected on how the workshops built up the confidence of attendees and supported demanding trial activities such as public speaking. Finally, we discussed the impact of the workshops on wider trial culture, by upholding the values of the team and challenging the status quo.

This article begins by locating Patient and Public involvement ((PPI) historically and argues that ‘mental health’ was a special case. This movement held promise for service users in repositioning them as researchers as opposed to ‘subjects’. We argue, however, that ultimately it failed and was reduced to involved publics ‘tinkering at the edges’. In respect to this we reference institutions, hierarchies, organisations and the overall political climate. Ultimately, however, it failed at the level of knowledge itself in that t he underlying assumptions of conventional researchers, their aims and goals, clashed with those of the assumptions and aims of survivors. However, we argue that all is not lost, the mainstream itself is imploding and beneath the surface forms of distinctly survivor-led knowledge are emerging.

Background The involvement of experts by experience in health research is a requirement from major funders across the world. One approach is Patient and Public Involvement (PPI) research advisory groups. This narrative review surfaced emerging practices in these groups based upon research papers that evaluated their own activities. Methods Papers published between 1/1/ 2014 and 10/1/2024 containing advisory group or related terms in the title or abstract were included. Articles had to focus on mental health and describe the evaluation of PPI research advisory groups. Articles where the PPI research advisory group was not the central focus were excluded. Results We identified 26 papers. Different terms were used and categorised as: Community Advisory Boards; Stakeholder Groups; PPI Groups; Young People Advisory Groups. There was a growth in literature over time; 42% of articles were published in 2023. Youth involvement was covered in 13 papers (50%). Many included a group member as an author (14 papers). Geographically most studies came from UK ( n  = 10), followed by Australia ( n  = 5) and Canada ( n  = 4). Our analysis identified nine themes and 123 sub-themes under: principles and values; group formation; running groups; facilitators; barriers; impacts on PPI group members; impacts on researchers; impacts on mental health research; recommendations. Commonalities in emerging practices included themes relating to: the importance of communication; an inclusive focus ensuring diversity of perspectives; choice and flexibility in how people are involved; creating safe spaces for involvement work; importance of detailed planning processes; and strategies to address power and hierarchy in research. Discussion and conclusion This field of practice is rapidly developing, building on well-established models such as Community Advisory Boards, underpinned by an epistemic justice value base. Our positionality led us to conclude more participatory evaluations from cross cultural partnerships delivering PPI research advisory groups would be beneficial to the mental health research ecosystem. This review would also benefit from an update to capture publications from 2024 onwards. Patient and public contribution The study was conceptualised and delivered by nine people working from a lived experience perspective in peer research and public involvement. All are authors on this paper.

Introduction The patient activation measure–mental health (PAM-MH) scale, adapted from the Patient Activation Measure-13 Items (PAM-13) developed in the United States, was designed to assess patient engagement and activation in mental health care. Despite initial validation of the PAM-MH in its original context, its applicability in other settings and its comparison to the gold standard PAM-13 remain unexplored. Furthermore, research addressing the face and construct validity of the PAM-MH is limited. This multi-phase study evaluated the face validity, construct validity, reliability and responsiveness of the PAM-MH in a Norwegian outpatient setting. Methods A participatory approach was adopted to actively involve user representatives in validating the scale. The validation process consisted of four interconnected studies. In the first sub-study, user representatives were invited to contribute to establish face validity by providing quantitative feedback on the perceived value and burden of completing the PAM-MH. The second sub-study examined the construct validity. It was hypothesised that the PAM-MH measures the construct of patient activation and would therefore correlate with the PAM-13. This hypothesis was tested using Pearson’s r in a sample of 55 outpatients. The third sub-study evaluated test–retest reliability (via ICC) and internal consistency (using Cronbach’s α), in a sample of 27 outpatients who completed the PAM-MH on two separate occasions. The final sub-study explored the responsiveness of the scale to change, guided by predefined hypotheses, in a sample of 11 outpatients. Results Adequate acceptability was established from users’ views of the value and burden of the scale (overall mean “value” score was 59.7% and mean “burden” was 39.6%). All hypotheses, established a priori for construct validity, reliability, and responsiveness-to-change, were confirmed. Conclusion This multi-phase study employed a participatory approach to validate the PAM-MH in a Norwegian outpatient context. Preliminary results demonstrated satisfactory face validity and construct validity, along with good reliability and responsiveness-to-change. The findings suggest that the PAM-MH is both valid and reliable, making it a suitable questionnaire to measure patient activation in a Norwegian outpatient setting.

Background The implementation of peer-led programs provided by individuals with lived experience of mental disorders has been increasingly acknowledged as a key component in improving the quality of mental health services. When considering research on eating disorders, peer-led online programs may be an alternative approach to enhancing participants’ well-being. Furthermore, increasing evidence suggests that mindful self-compassion (MSC) may be a helpful approach to strengthening self-compassion as a prevention program for eating disorders. However, the feasibility and acceptability of online group-based peer-led MSC programs remain unexplored in this context. Methods In this pilot study, using a single-arm pre-post pilot design, lived experience experts delivered and managed the program themselves and collected the data. Participatory action research principles informed the study’s quantitative design. Adults with symptoms of eating disorders were invited to participate. The primary outcome was to assess the feasibility and acceptability of the MSC program, measured by the dropout rate, attendance rate, and client satisfaction. As a secondary outcome, the program’s preliminary efficacy on self-compassion and psychological well-being was investigated. Results Twenty-five people contacted the user organization, and all agreed to participate. However, 18 participants (78%) responded to the questionnaires at both measurement points. Two participants dropped out. The attendance rate was excellent, with 35% of the participants achieving 100% attendance, 39% completing seven of the eight group sessions (87.5% attendance), and 26% of the participants achieving 75% attendance. The participants reported to be very satisfied with the MSC program, with a total mean score of 14.4 ( SD  = 1.42, 95% CI [13.7, 15.1]) out of a maximum of 16 points. The participants also showed significant improvement in self-compassion and psychological well-being. Conclusions The findings indicate that the program was both feasible and acceptable for adults with eating disorder symptoms. Additionally, participants reported significant improvements in self-compassion and psychological well-being. However, as this was the first study to examine such a program in this context, these preliminary findings warrant further research. Nonetheless, these findings suggest that peer-led online MSC programs may offer an accessible, community-rooted, and person-centered addition to ED services, particularly for individuals underserved by traditional models.

Background Schizophrenia (SZ) is a severe mental illness that significantly impairs patients' quality of life and cognitive functioning. Objective This study investigates the role of nitric oxide (NO) in SZ pathogenesis by examining its induction of neuronal pyroptosis and its correlation with cognitive impairment. We aimed to identify potential therapeutic targets by analyzing the expression of pyroptosis-related genes (NLRP3, Caspase-1, GSDMD), inflammatory factors (IL-1β, IL-18), and SZ susceptibility genes (CUX2, DTNBP1). Methods (1) SH-SY5Y cells were treated with sodium nitroprusside (NO donor) at varying concentrations. Cell viability, NO levels, and gene expression were assessed using Cell Counting Kit-8(CCK-8), Griess reagent, and qPCR assays. (2) Clinical analysis included 58 SZ patients and 62 healthy controls. Cognitive function was evaluated using RBANS, and NO levels and gene expression were measured in blood samples. Results (1) NO treatment reduced SH-SY5Y cell viability and altered the expression of pyroptosis-related and susceptibility genes, and the IC 50 value of sodium nitroprusside on SH-SY5Y cells was 1.4 mM. (2) SZ patients exhibited elevated NO levels, reduced cognitive scores, and dysregulated gene expression compared to controls. NLRP3 and IL-18 were strongly associated with cognitive impairment. Conclusion NO serves an essential role in the pathological mechanisms of schizophrenia by inducing neuronal pyroptosis, potentially through the key factor NLRP3. Additionally, NLRP3 and IL-18 are strongly linked with cognitive impairment in schizophrenia.

Background Mental health conditions represent a significant global public health issue, affecting millions of people worldwide. To meet the increasing demands on mental health services in Switzerland, the development of a competence centre for mental health can provide the necessary structures and resources for a comprehensive and innovative approach to mental health care. This paper outlines the participatory process used in the development and implementation of a competence centre for mental health in Eastern Switzerland for the promotion of positive mental health. Methods The process was conducted using a participatory design and a co-creation approach. This involved the collaborative engagement of all relevant mental health stakeholders, working together as equals throughout all stages of the process. A key stakeholder group was established with N  = 10 individuals, including persons with lived experience, (mental) health care professionals, researchers, educators, and decision-makers at institutional and regional levels. Between March 2020 and June 2021, four conceptualisation meetings were conducted using participatory methods and tools to facilitate collaborative, reflexive, and innovative engagement. Results The participatory process resulted in a framework for a competence centre for mental health, informed by the needs and experiences of key mental health stakeholders. Three main areas were identified in which the competence centre could effect change for the promotion of positive mental health and the improvement of mental health services in Eastern Switzerland: (1) Academic teaching of future health professionals; (2) further education for current health professionals; and (3) a research agenda that provides a scientific contribution to the improved mental health care of the population. Conclusions The co-creation process resulted in an inclusive, practice-oriented framework for a competence centre for mental health at the intersection of research, education, and practice. By continuing to adopt a participatory approach, the competence centre can provide evidence-based training for health professionals, foster innovative and needs-based models of care, advocate for policy change, and promote best practices for the promotion and recovery of mental health. The successful development and implementation of the competence centre using a co-creation process provides encouraging support for the use of participatory approaches in the field of mental health.

Background Mental health settings are increasingly using co-facilitation of educational group interventions in collaboration with patient partners and service users. However, despite promising results, limited information is available regarding the feasibility and satisfaction levels of these programmes among adults newly diagnosed with attention-deficit hyperactivity/impulsivity disorder (ADHD). Hence, this study aimed to determine the feasibility, acceptability, and preliminary effects of a user co-facilitated psychoeducational group programme for adults diagnosed with ADHD. Methods This feasibility proof-of-concept randomised controlled trial recruited outpatients from a Norwegian community mental health centre. Outpatients randomised to the intervention group (IG) received a psychoeducational programme supplementing Treatment As Usual (TAU), while the control group received TAU. Feasibility was determined by the acceptance rate, adherence rate, and dropout rate. Acceptability was measured with the Client Satisfaction Questionnaire and a 3-item scale measuring satisfaction with the received information. To test the preliminary effects, self-efficacy, symptom severity, and quality of life were measured at baseline and pre- and post-intervention. Results Feasibility was demonstrated; most of the patients were willing to enrol, participants attended 82% of the psychoeducational programme, and only 13% dropped out of the study. The between-group analyses revealed that the IG reported significantly greater mean satisfaction than the CG. Moreover, the intervention group was more satisfied with the information they received during the psychoeducational programme. Concerning the preliminary effects, the linear mixed model showed improvement in quality of life (the subscale relationship); however, other patient-reported outcomes did not show improvements. Conclusions This proof-of-concept randomised controlled trial supports the feasibility and acceptability of the user co-facilitated psychoeducational programme for patients newly diagnosed with ADHD in an outpatient setting. While preliminary findings indicate promise in enhancing patient-reported outcomes, a larger study is warranted to assess the intervention’s effectiveness rigorously. Trial registration NCT03425, 09/11/2017.

Background The involvement and engagement of people with lived experience is considered increasingly important in health research. A growing corpus of literature on the involvement of people with lived experience of mental health conditions, including people at psychosis high risk states, can be found. This study aims to explore the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states who were involved in a participatory research project. Methods In this study with a combined participatory and qualitative research approach, we used a reflexive thematic analysis approach to systematically analyse open reflection reports from researchers and co-researchers with lived experience of psychosis high risk states, who took part in a participatory research project (VOICE). All participants ( n  = 12) were asked to anonymously write reflection reports on their subjective experience of participatory research. There were no formal or content-related instructions for writing the reflection reports. Reflection reports provided by eight participants were qualitatively analysed. Results Three themes were identified from the analysis of the reflection reports. First “When uncertainty becomes a unifying element – reflecting on expectations and roles”. Second “Fostering community growth: creating an environment for collaborative teamwork as well as new and creative directions”. Third “Exploring personal and scientific achievements of the project”. At the outset of the research project, the researchers’ focus was on expectations and reflections on their role within the project, accompanied by a feeling of uncertainty. Subsequently, a sense of community developed within a favourable study framework. Finally, attention focused on research project outcomes and personal achievements within the project. Conclusion The analysis of the anonymous reflection reports on a participatory research project indicates that there was a positive collaboration between participants with and without lived experience of psychosis high risk states, wherein they were able to interact on an equal footing. Participants reported an experience of equal cooperation and gained relevant personal insights from project participation. Although we do not have clear evidence of experiences of power imbalances or perceived hierarchies based on the analysed reports, these cannot be ruled out and have to be addressed in future research.

Background Despite parents of children treated for cancer commonly reporting psychological difficulties such as symptoms of depression and anxiety, there is a lack of evidence-based psychological interventions tailored to their needs. We therefore developed an internet-administered, guided, low-intensity cognitive behavioural therapy-based self-help intervention (EJDeR). We examined the acceptability and feasibility of the intervention and study procedures in the single-arm feasibility trial ENGAGE. Results suggested the intervention and study procedures are feasible and acceptable. However, a need for modifications and refinements to the intervention and study procedures was identified. We conducted a qualitative interview study to explore the acceptability and feasibility of the intervention and study procedures from the perspective of parents to inform modifications and refinements to the intervention and study procedures. Methods Semi-structured interviews were conducted with 52 parents (17 fathers, 35 mothers). A public contribution group (three parents of children treated for cancer) analysed the data independently from the research team and contributed to dissemination. An inductive content analysis was performed using the Framework Method. Results The intervention was perceived as acceptable and relevant, and parents expressed positive attitudes toward internet-administered support. However, parents identified a need for adaptations to intervention content, e.g., a greater focus on the family, trauma, and the cancer experience. Barriers to engagement were also identified, including technical difficulties and a need for modifications to improve intervention user-friendliness and smartphone and/or tablet compatibility. Study procedures were also perceived as acceptable and feasible. However, a need was identified to improve parents’ understanding of the study and to reduce the amount and frequency of assessments. The public contributors’ analysis was similar to that of the research team. However, the research team overlooked important nuances. For example, the public contributors’ analysis highlighted parents’ difficulties distinguishing between the intervention and study procedures. Conclusions The intervention and study procedures were perceived as acceptable and feasible. However, the need for important modifications and refinements were suggested to improve future acceptability and feasibility. Involving public contributors in the analysis resulted in developing a more comprehensive and nuanced understanding of the data. Trial registration ISRCTN 57,233,429 (Registration date: 19/04/2018); ISRCTN 18,404,129 (Registration date: 25/11/2019).