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Background Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth‐friendly) and meaningful (i.e., non‐tokenistic) partnerships with young people with lived experience of mental ill‐health in research. This paper describes a pilot evaluation and iterative design of a Youth Lived Experience Working Group (LEWG) protocol that was established by the Youth Mental Health and Technology team at The University of Sydney's Brain and Mind Centre, based on the results of two studies. Methods Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute, to qualitatively explore how LEWG processes could be improved. Youth partners completed online surveys, and results were shared over two LEWG meetings in 2021 to empower youth partners to collectively identify actions of positive change regarding LEWG processes. These meetings were audio‐recorded and transcripts were subsequently coded using thematic analysis. Study two assessed whether LEWG processes and proposed improvements were acceptable and feasible from the perspective of academic researchers via an online survey in 2022. Results Quantitative and qualitative data collected from nine youth partners and 42 academic researchers uncovered initial learnings regarding facilitators, motivators, and barriers to partnering with young people with lived experience in research. Implementing clear processes for youth partners and academic researchers on effective partnership strategies, providing training opportunities for youth partners to develop research skills, and providing regular updates on how youth partner contributions led to research outcomes were identified as key facilitators. Conclusions This pilot study provides insight into a growing international field on how to optimise participatory processes so that researchers and young people with lived experience can be better supported and engaged to make meaningful contributions to mental health research. We argue that more transparency is needed around participatory research processes so that partnerships with young people with lived experience are not merely tokenistic. Consumer Contributions Our study has also been approved by and reflects the concepts and priorities of our youth lived experience partners and lived experience researchers, all of whom are authors of this paper.

This study examined and reflected on the frequency of people with psychotic symptoms and features as the target population in design studies for mental health care innovation.This study examined and reflected on the frequency of people with psychotic symptoms and features as the target population in design studies for mental health care innovation.

The Lived Experience Advisor Program (LEAP), introduced at Western Health in January 2023, is an innovative approach to consumer engagement in mainstream health care, integrating lived experience perspectives into organisational decision-making, research, and quality improvement. As health care has increasingly embraced consumer involvement at both direct care and governance levels, the LEAP was implemented to expand the role of health consumers beyond traditional volunteer positions, recognising lived experience as a valuable form of expertise. Through employment of Lived Experience Advisors (LEAs) across a range of clinical and operational projects, this program has enhanced service planning and health literacy for diverse communities. This case study details the development, implementation, and outcomes of the LEAP, focusing on how LEAs have contributed to areas such as youth health services, carer support, emergency care, and consumer engagement strategies. With support from a Community of Practice, LEAs receive ongoing mentorship and training, fostering skill development and promoting sustainable career pathways. The program has also driven shifts in staff perspectives, supporting a patient-centred culture where consumer voices are prioritised. Challenges in program funding, role clarity, and matching lived experience to project needs, underscore the need for thoughtful recruitment, executive sponsorship, and adaptable role design. The impact of the LEAP has extended beyond individual projects, influencing organisational culture, and enhancing staff capabilities in consumer partnership. The case study offers practical insights for other healthcare organisations aiming to integrate lived experience roles, emphasising the potential for consumer-led initiatives to drive transformative change in healthcare delivery and policy.

Rapid development and adoption of natural language processing (NLP) techniques has led to a multitude of exciting and innovative societal and health care applications. These advancements have also generated concerns around perpetuation of historical injustices and that these tools lack cultural considerations. While traditional health care NLP techniques typically include clinical subject matter experts to extract health information or aid in interpretation, few NLP tools involve community stakeholders with lived experiences. In this perspective paper, we draw upon the field of community-based participatory research, which gathers input from community members for development of public health interventions, to identify and examine ways to equitably involve communities in developing health care NLP tools. To realize the potential of community-based NLP (CBNLP), research and development teams must thoughtfully consider mechanisms and resources needed to effectively collaborate with community members for maximal societal and ethical impact of NLP-based tools.

   With the movement towards recovery-oriented mental health (MH) services, individuals with MH lived-experience are increasingly employed as peer providers (peers). Peers are unique in that they bring knowledge from experience and eye-level connection to service users that enhance the quality of services and humanize MH systems’ culture. In Israel, hundreds of peers are employed in various roles and settings across the MH system. However, peer integration into MH services faces challenges. One issue involves the use of self-disclosure (SD) in MH services which varies with explicitness across roles and settings. This study sought to understand perspectives and experiences regarding peers’ SD (use & sharing of knowledge from experience) among different stakeholders in MH health services. Six focus groups and 4 semi-structured interviews (N = 42) were conducted as a part of a larger international project (UPSIDES; ERC Horizon 2020, Moran et al., Trials 21:371, 2020). Data was transcribed verbatim and analyzed using thematic analysis. Four categories and 7 themes were identified regarding current perspectives and experiences with peers’ SD in MH organizations: (i) Restrained or cautious organizational approach to SD; (ii) Attitudes of peers to SD approach; (iii) The influence of designated peer roles on SD; and (iv) Unwarranted SD of peers working in traditional roles. The findings reveal that peers’ SD in MH services is a complex process. Organizational approaches were often controlling of non-designated peers’ SD practices; participants had diverse attitudes for and against peers’ SD; SD occurred according to personal preferences, specific peer role and the director’s approach to peers’ SD; Conflictual SD dilemmas emerged in relation to service users and staff. SD sometimes occurs unwarrantely due to ill mental health. The presence of peer-designated roles positively impacts peers' SD. We interpret the current mix of views and general conduct of peer SD practice in statutory MH services as related to three aspects: 1. The presence of a traditional therapeutic SD model vs. a peer SD model – with the former currently being dominant. 2. Insufficient proficiency and skill development in peers’ SD. 3. Stigmatic notions about peer SD among service users and staff. Together, these aspects interrelate and sometimes create a negative cycle create tension and confusion. A need to develop professionalism of peer SD in statutory services is highlighted alongside enhancing staff and service user acknowledgement of the value of peer SD. Developing peer-designated roles can positively impacts peer SD in MH statutory services. Training, support, and organizational interventions are required to further support for peer-oriented SD and the enhancement of a person-centered and recovery orientation of MH services.

Background People with aphasia (PWA, impaired language/communication) are often excluded from research that concerns them due to a lack of methodological adaptations to support communication. This paper describes adaptations to support their involvement in experience‐based codesign (EBCD). Aims To describe the involvement of PWA in EBCD and critically evaluate adaptations required to support involvement. Methods Mixed methods process evaluation and reflexive critical appraisal with PWA, significant others (SO), and speech pathologists (SP). Using surveys, stakeholders (n = 127) and a consumer advisory group (CAG; n = 6) provided feedback on involvement in five stages of the research: (1) online interviews and focus groups; (2) online surveys; (3) consensus meetings; (4) codesign workshops; and (5) the CAG. Critical reflections (lead researcher) informed the analysis. Descriptive statistics and inductive content analysis were used. Results Most PWA (79%) liked sharing their experiences online, and contributed as much as desired in group meetings (64%). A modified touchpoint film approach (use of voice actors, still images, and subtitles) supported reflexive discussions and collaborative understanding. All PWA and SO, and most SPs (78%) thought the touchpoint film helped them to understand experiences of care and areas for change. Long‐term engagement in the project was perceived to help build relationships, reduce hierarchical power differentials and support equal sharing of ideas. Conclusions Meaningful involvement of PWA was supported through long‐term engagement, a modified touchpoint film approach, and hybrid methods of data collection. EBCD is a suitable approach for exploring experiences of care, identifying leading priorities, and co‐designing areas for change with PWA. Patient or Public Contribution This evaluation is informed by the reflections of the research team. This team included the consumer advisory group (public involvement team members) comprising PWA (n = 3), SOs (n = 2) and a Cultural Capability Officer. Research team members (LNA, DAC, VJP, and SJW) designed the study (including research questions, data analysis processes and assessment measures). Public involvement guided study procedures and recruitment (e.g., methods for engaging with people with lived experience of aphasia), and the interpretation and dissemination of results (e.g., co‐authors on papers). A Cultural Capability Officer advised on culturally safe practices for Aboriginal and Torres Strait Islander participants. Aboriginal and Torres Strait Islander Peoples, are the First Nations people of Australia. Cultural Capability Officer support refers to the support provided to ensure behaviours, systems and processes are conducted in a way that is culturally respectful. Research is reported in line with the GRIPP‐2 guidelines for reporting patient and public involvement.

Understanding of the value of patient and public involvement in research has grown in recent years, but so too has uncertainty about how best to practice and how best to report such involvement in research outputs. One way proposed to report such involvement is through checklists, such as the GRIPP2, which aims to improve quality, transparency, and consistency in such reporting. We critique the unproblematised use of such a tool because of two main concerns. First, being asked to complete a GRIPP2 for a recent publication felt divisive given that the service user researcher was as much a member of the authorship team as the other researchers (whose involvement did not necessitate a checklist). Second, checklists do not actually address the power imbalances and tokenism that is rife in patient and public involvement in research. Indeed, the false sense of objectivity fostered by meeting the minimum requirements of the checklist means that researchers may not go further to engage in reflexive research practices and reporting. Rather than rote use of such checklists, we recommend mindful reflexive reporting in research outputs of patient and public involvement processes. We also recommend future iterations of the GRIPP consider (a) incorporating criteria about whether the checklist is completed by or with service user researchers or not, (b) addressing criteria that position service user research as needing to be justified, and (c) expanding the “critical perspective” element of the checklist to explicitly consider power differentials. Plain English summary Checklists (such as the GRIPP2) have been proposed as a way to improve how research papers report patient and public involvement in research projects. We were recently asked to complete a GRIPP2 as part of a peer review process, and it felt divisive. AB—a service user researcher—was just as much a part of the research team as was BS—a critical health psychologist. However, the role of BS in the research did not have to be justified or reported in the same way that was being asked of AB. A further concern about being required to use the checklist was that it did not necessarily lead to better reporting. Rather, it created a false sense of objectivity about patient and public involvement, and this might serve to hide power imbalances and tokenism in the research process. We recommend that instead of relying on such checklists, that researchers, reviewers, editors and readers reflect on patient and public involvement processes and the ways in which these are reported. We also make recommendations to make future iterations of the GRIPP more inclusive.

The Government of Wales acknowledged the disproportionately negative impact of COVID-19 on disabled people by establishing an enquiry led and controlled by them. The outcome, a report written by disabled people, evidenced the impact of past social and health inequalities, failures in social policy, and concerns about human rights. In response, the Welsh Government established a Disability Rights Taskforce to co-produce a 10-year Disability Rights Action Plan. The Taskforce of policy makers and disabled people is governed by four agreed principles: the social model of disability; the value of disabled people's lived experiences; co-production, and the incorporation of the UNCRDP[1] into Welsh law. This article reflects on the challenges and achievements and wider learning from the Taskforce's work. Keywords: Co-production, disability rights, Wales, pandemic, lived experience

Purpose This discursive paper presents a lived experience leadership model as developed as part of the Activating Lived Experience Leadership (ALEL) project to increase the recognition and understanding of lived experience leadership in mental health and social sectors. The model of lived experience leadership was formulated through a collaboration between the South Australian Lived Experience Leadership & Advocacy Network and the Mental Health and Suicide Prevention Research and Education Group. Design/methodology/approach As one of the outcomes of the ALEL research project, this model incorporates findings from a two-year research project in South Australia using participatory action research methodology and cocreation methodology. Focus groups with lived experience leaders, interviews with sector leaders and a national survey of lived experience leaders provided the basis of qualitative data, which was interpreted via an iterative and shared analysis. This work identified intersecting lived experience values, actions, qualities and skills as characteristics of effective lived experience leadership and was visioned and led by lived experience leaders. Findings The resulting model frames lived experience leadership as a social movement for recognition, inclusion and justice and is composed of six leadership actions: centres lived experience; stands up and speaks out; champions justice; nurtures connected and collective spaces; mobilises strategically; and leads change. Leadership is also guided by the values of integrity, authenticity, mutuality and intersectionality, and the key positionings of staying peer and sharing power. Originality/value This model is based on innovative primary research, which has been developed to encourage understanding across mental health and social sectors on the work of lived experience leaders in seeking change and the value that they offer for systems transformation. It also offers unique insights to guide reflective learning for the lived experience and consumer movement, workers, clinicians, policymakers and communities.

The purpose of this study is to explore the lived experiences of 16 Deaf Canadians ages 18-85 years in relation to their well-being. Quantitative measures were used as descriptors of well-being, and qualitative measures explored open-ended narratives. Results indicated that as a group, this sample was of normal cognition, moderately depressed, moderately anxious, and slightly satisfied with their lives. Thematic analysis yielded a rich understanding of the intersection of systems that surround the family of the Deaf individual. These included the medical, educational, employment, government, and societal systems, which are influential from the earliest years, often in negative, enduring ways. Overlaid on all of these systems is Canadian legislation which is meant to address human rights, language recognition, and disability access acts. Recommendations are offered to close the gap of policy and practice, which will ultimately better the lives of Deaf Canadians as well as our society at large. L'objectif de cette étude est d'explorer les expériences vécues de 16 personnes sourdes vivant au Canada, âgées de 18 à 85 ans, en ce qui a trait à leur bien-être. Des mesures quantitatives ont été utilisées comme descripteurs du bien-être, et des mesures qualitatives ont permis d'explorer les réponses aux questions ouvertes. Selon les résultats, en tant que groupe, l'échantillon présentait une cognition normale, était modérément déprimé, modérément anxieux et légèrement satisfait de sa vie. L'analyse thématique a permis une riche compréhension de l'intersection des systèmes qui entourent la famille d'une personne sourde. Ces derniers incluent les systèmes médical, de l'éducation, de l'emploi, gouvernemental et sociétal, qui influent sur la personne depuis l'enfance, souvent selon de façon négative et durable. Se superpose à tous ces systèmes la législation du Canada, qui doit assurer des lois sur les droits de la personne, la reconnaissance du langage ainsi que l'accès pour les personnes ayant un handicap. Les auteurs formulent des recommandations visant à réduire l'écart entre les politiques et les pratiques, afin d'améliorer le quotidien des personnes sourdes au Canada ainsi que celui de la population en général. Public Significance Statement As a cultural and linguistic minority, the perspectives of Deaf Canadians have not been included in studies of well-being. A Deaf psychologist led our research team, and we explored the lived experiences of Deaf Canadians through their own stories and mental health screening tools. Our findings indicate that many societal barriers negatively affect their lives, yet these individuals demonstrate remarkable resilience. From their narratives, we offer recommendations necessary to ensure equitable lives as Canadians.