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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.

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.

In this paper we aim to sketch and describe the differences (and some similarities) between the approaches, assumptions and limitations of both natural and phenomenological sciences. We establish the borders of each domain and ask whether consciousness can be found in either, and in what form. In the form of experience, we argue that it can only be found in the domain phenomenological inquiry. Exploration of such a domain requires different set of tools and rules than used in the natural sciences, remaining on its own side of the fence. Phenomenological science needs to embrace the fact that observed phenomena are observer-dependant and focus equally on both the way we observe and what we observe. To develop appropriate methodologies, phenomenological science needs to establish on its own while communicating with the natural sciences in the form of mutual constraints, not prescriptions.

Reviewing recent research on poverty in the United States, we derive a conceptual framework with three main characteristics. First, poverty is multidimensional, compounding material hardship with human frailty, generational trauma, family and neighborhood violence, and broken institutions. Second, poverty is relational, produced through connections between the truly advantaged and the truly disadvantaged. Third, a component of this conceptual framework is transparently normative, applying empirical research to analyze poverty as a matter of justice, not just economics. Throughout, we discuss conceptual, methodological, and policy-relevant implications of this perspective on the study of extreme disadvantage in America.

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.

Interpretive phenomenology presents a unique methodology for inquiring into lived experience, yet few scholarly articles provide methodological guidelines for researchers, and many studies lack coherence with the methodology’s philosophical foundations. This article contributes to filling these gaps in qualitative research by examining the following question: What are the key methodological and philosophical considerations of leading an interpretive phenomenological study? An exploration of interpretive phenomenology’s foundations, including Heideggerian philosophy and Benner’s applications in health care, will show how the philosophical tradition can guide research methodology. The interpretive phenomenological concepts of Dasein, lived experience, existentialia, authenticity are at the core of the discussion while relevant methodological concerns include research paradigm, researcher’s stance, objective and research question, sampling and recruitment, data collection, and data analysis. A study of pediatric intensive care unit nurses’ lived experience of a major hospital transformation project will illustrate these research considerations. This methodological article is innovative in that it explicitly describes the ties between the operational elements of an interpretive phenomenological study and the philosophical tradition. This endeavor is particularly warranted, as the essence of phenomenology is to bring to light what is taken for granted, and yet phenomenological research paradoxically makes frequent assumptions concerning the philosophical underpinnings.

ObjectivesSystematically review the qualitative literature on living with knee osteoarthritis from patient and carer perspectives.DesignSystematic review of qualitative studies. Five electronic databases (CINAHL, Embase, MEDLINE, PsycINFO, SPORTDiscus) were searched from inception until October 2018. Data were synthesised using thematic and content analysis.ParticipantsStudies exploring the experiences of people living with knee osteoarthritis, and their carers were included. Studies exploring experiences of patients having participated in specific interventions, including surgery, or their attitudes about the decision to proceed to knee replacement were excluded.ResultsTwenty-six articles reporting data from 21 studies about the patient (n=665) and carer (n=28) experience of living with knee osteoarthritis were included. Seven themes emerged: (i) Perceived causes of knee osteoarthritis are multifactorial and lead to structural damage to the knee and deterioration over time (n=13 studies), (ii) Pain and how to manage it predominates the lived experience (n=19 studies), (iii) Knee osteoarthritis impacts activity and participation (n=16 studies), (iv) Knee osteoarthritis has a social impact (n=10 studies), (v) Knee osteoarthritis has an emotional impact (n=13 studies), (vi) Interactions with health professionals can be positive or negative (n=11 studies), (vii) Knee osteoarthritis leads to life adjustments (n=14 studies). A single study reporting the perspectives of carers reported similar themes. Psychosocial impact of knee osteoarthritis emerged as a key factor in the lived experience of people with knee osteoarthritis.ConclusionsThis review highlights the value of considering patient attitudes and experiences including psychosocial factors when planning and implementing management options for people with knee osteoarthritis. Trial registration number CRD42018108962

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.

wThe development of recovery-oriented practice in mental health has brought about a much greater prominence to the place of lived experience workers. Many aspects of indvidualised recovery-oriented care have been taken up in forensic mental health settings. However, the introduction of lived experience workers is arguably significantly more difficult when the dual vulnerabilities of forensic mental health services users are considered (Drennan & Alred, 2012). This paper will describe a multi-layered approach to the introduction of lived experience roles in a forensic in-patient unit. Roles have developed from being solely ward-based, to service-wide roles that include participation in management and service development, the creation of a Recovery College Forensic Campus, and to co-production and co-delivery of the psychological therapies programme. In addition to ‘mapping’ these developments in co-production, this paper will also describe the development of the governance structures that have been necessary to support this infrastructure. Lived experience workers require recruitment, vetting, placement, and aftercare, when they engage in the activities available. On-going mental health and risk stability cannot be assumed, and so regular formal and informal psychosocial support is required to ensure that workload pressures do not negatively impact on other service users and staff. The paper will suggest that much more attention needs to be paid to the development of organisational infrastructure to sustain and manage the growth of lived experience roles in forensic mental health settings than is currently in place.