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BACKGROUND: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. METHODS: Data for this paper were collected in three separate lived experience agenda-setting studies conducted over a 9-year period from 2013 to 2022; two group discussions and an open-ended online survey. Data were combined and thematic analysis undertaken. RESULTS: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. CONCLUSION: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power-sharing, respect and recognition of lived experience as central to effe

BACKGROUND: Priority setting in mental health research is arguably lost in translation. Decades of effort has led to persistent repetition in what the research priorities of people with lived-experience of mental ill-health are. AIM: This was a narrative review and synthesis of published literature reporting mental health research priorities (2011-2023). METHODS: A narrative framework was established with the questions: (1) who has been involved in priority setting? With whom have priorities been set? Which priorities have been established and for whom? What progress has been made? And, whose priorities are being progressed? RESULTS: Seven papers were identified. Two were Australian, one Welsh, one English, one was from Chile and another Brazilian and one reported on a European exercise across 28 countries (ROAMER). Hundreds of priorities were listed in all exercises. Prioritisation mostly occured from survey rankings and/or workshops (using dots, or post-it note voting). Most were dominated by clinicians, academics and government rather than people with lived-experience of mental ill-health and carer, family and kinship group members. CONCLUSION: One lived-experience research led survey was identified. Few studies reported lived-experience design and development involvement. Five of the seven papers reported responses, but no further progress on priorities being met was reported.

BACKGROUND: The importance and value of involvement of people with lived experience of suicide has been recognized in suicide research and prevention. Nonetheless, clear guidance on research collaboration and co-production is lacking. This study aimed to address this gap by developing a set of guidelines on active involvement of people with lived experience of suicide in suicide studies., i.e., conducting research with or by people with lived experience, rather than to, about or for them. METHODS: The Delphi method was used to determine statements on best practice for the active involvement of people with lived experience of suicide in suicide research. Statements were compiled through a systematic search of the scientific and grey literature, and reviewing qualitative data from a recent related study conducted by the authors. Two expert panels: people with lived experience of suicide (n = 44) and suicide researchers (n = 29) rated statements over three rounds of an online survey. Statements endorsed by at least 80% of panellists of each panel were included in the guidelines. RESULTS: Panellists endorsed 96 out of 126 statements in 17 sections covering the full research cycle from deciding on the research question and securing funding, to conducting research and disseminating and implementing outcomes. Overall, there was a substantial level of agreement between the two panels regarding support from research institutions, collaboration and co-production, communication and shared decision making, conducting research, self-care, acknowledgment, and dissemination and implementation. However, panels also disagreed on specific statements regarding representativeness and diversity, managing expectations, time and budgeting, training, and self-disclosure. CONCLUSIONS: This study identified consensus recommendations on active involvement of people with lived experience of suicide in suicide research, including co-production. Support from research institutions and funders, an

BACKGROUND: The factors that influence transition from suicidal ideation to a suicide attempt or remission of suicidal thoughts are poorly understood. Despite an abundance of research on risk factors for suicidal ideation, no large-scale longitudinal population-based studies have specifically recruited people with suicidal ideation to examine the mechanisms underlying critical transitions to either suicide attempt or recovery from suicidal ideation. Without longitudinal data on the psychological, behavioural, and social determinants of suicide attempt and the remission of suicidal ideation, we are unlikely to see major gains in the prevention of suicide. AIM: The LifeTrack Project is a population-based longitudinal cohort study that aims to identify key modifiable risk and protective factors that predict the transition from suicidal ideation to suicide attempt or remission of suicidal ideation. We will assess theory-informed risk and protective factors using validated and efficient measures to identify distinct trajectories reflecting changes in severity of suicidal ideation and transition to suicide attempt over three years. METHODS: A three-year prospective population-based longitudinal cohort study will be conducted with adults from the general Australian population who initially report suicidal ideation (n = 842). Eligibility criteria include recent suicidal ideation (past 30 days), aged 18 years or older, living in Australia and fluent in English. Those with a suicide attempt in past 30 days or who are unable to participate in a long-term study will be excluded. Participants will be asked to complete online assessments related to psychopathology, cognition, psychological factors, social factors, mental health treatment use, and environmental exposures at baseline and every six months during this three-year period. One week of daily measurement bursts (ecological momentary assessments) at yearly intervals will also capture short-term fluctuations in suicidal ide

This guide provides information for clinicians from organisations and services participating in PCOC to use their reports and the suite of PCOC quality improvement tools for continuous improvement, and to demonstrate improvement in patient and family/carer outcomes.

AIMS AND OBJECTIVES: The aim of the current study is to explore whether and how the expectations of consumers to be "representative" influences consumers' ability to contribute to health services partnerships. BACKGROUND: Health standards call for services to partner with consumers in service development and governance. While existing research criticises the assumption that individual mental health consumers working with mental health services must be representative of consumers more broadly, research has yet to explore whether this requirement exists for consumers of other health services. Requiring individual consumers to be representative of consumers more broadly marginalises and limits consumer involvement. DESIGN: A qualitative, exploratory design was employed. METHODS: Consumers (n = 6), clinicians (n = 7) and health managers (n = 5) were interviewed about consumer participation in health services. Data analysis was conducted through the lens of social exchange theory and informed by discursive psychological principles. RESULTS: The current study extends the existing literature within mental health, finding that consumers of other health services are also held responsible for representing broader communities. Data also suggested that a requirement to be representative would marginalise consumers with a passion to bring about change in health systems. CONCLUSIONS: The findings suggest that organisations might need a culture change so that individual consumers are not expected to be representative of consumers more broadly and that participation be made more accessible for diverse groups of consumers. RELEVANCE TO CLINICAL PRACTICE: Given the role that nurses might play as allies to consumers within health services, the findings of this study contribute to knowledge about the expectations placed on consumers and the ways that nurses might advocate for better partnerships.

Context: In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. Objective: To explore patients' levels of pain and other symptoms while receiving care from PCSs. Method: PCSs registered through Australia's national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. Results: Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe 'other symptoms', 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. Conclusions: Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as 'severe'. Our findings highlight the importance of routine, comprehensive assessment of patients' concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting.

Item does not contain fulltext, BACKGROUND: Nursing roles in general practice have undergone significant expansion, but as yet there are few tools to measure the quality of nursing care in general practice. This study piloted the Patient Enablement and Satisfaction Survey (PESS) to evaluate two aspects of quality of care in this setting. METHODS: Participants were patients attending nurse-led general and chronic-disease clinics in two general practices The survey was posted to 180 consecutive patients attending these clinics over one week (response rate, 28% for general clinic, 40% chronic diseases clinic; n = 57). Scores were calculated for enablement and satisfaction and free text comments were analysed. Comparisons were made between patients who had attended the general clinic for influenza vaccination and for other conditions, and those who attended the chronic diseases clinic. FINDINGS: Overall results indicate high levels of satisfaction (M = 68.3/75 SD = 8.1) and moderate enablement (M = 4.7/8 SD = 3.2). Significant differences were observed between satisfaction scores for patients attending the chronic disease clinic and the general clinic for influenza vaccinations alone, and between those attending the general clinic for influenza vaccinations versus treatment of other conditions. Patients attending the chronic disease clinic had higher enablement scores than patients receiving influenza vaccinations at the general clinic. Analysis of free-text comments in the survey supported these findings. CONCLUSION: All patients reported satisfaction with nursing care. Patients receiving chronic disease management reported high levels of enablement. This pilot indicated that the PESS can distinguish between two aspects of the quality of nursing care that may impact on patient outcomes.

Contains fulltext : 152136.pdf (publisher's version ) (Open Access), BACKGROUND: As the prevalence of long-term and multimorbid conditions is increasing, patients increasingly require consultations with multiple health care professionals and coordination of their care needs. METHODS: This study is based on a 2011 survey of older Australians which draws on sub-populations of people with diabetes aged 50 years or over, people with chronic obstructive pulmonary disease, and members of Nationals Seniors Australia. We develop a composite coordination measure and examine differences in the measure with different care coordination indicators using both descriptive and regression methods. Three categories of respondent-perceived care organisers are used: health care professionals; "no one"; and patients, their partner, relative or friend. RESULTS: Of the 2,540 survey respondents (an overall response rate of 24%), 1,865 provided information on who organised their health care, and composite coordination measures were calculated for 1,614. Multivariate analysis showed the composite score was highest where a health care professional coordinated care, followed by care organised by self or a carer, and then the group reporting no organiser. CONCLUSION: In moving towards care coordination there are opportunities to improve the care coordination process itself, and the key enablers to improving care coordination appear to be the availability and communication of clinical information and the role of the clinical team.

Active Networking (AN) involves the processing of programs in heterogeneous networking environments. There are several AN solutions, exposing different APIs and using different languages, and each may be appropriate for different tasks such as high-speed multimedia processing or low-speed routing adjustments. We describe our active node system, LANode, that separates control- and data-plane activities, and introduce Component Compatibility Markup Language (CCML), a critical component of LANode that allows it to be applied to heterogeneous platforms.

Mental health research priority-setting has a long history internationally. Many of these studies use expert panels or consensus methods across multiple mental health stakeholder groups. Whilst such approaches are designed to produce agreed research priorities, there is a risk that the specific and nuanced priorities of less powerful groups, especially those with lived experience of mental health issues, are lost in translation. We aimed to develop Australian mental health research priorities from the perspectives of people living with mental ill-health and their carers, families and kinship group members. A cross-sectional, open-ended survey was conducted nationally in Australia during January and February 2022. We asked participants to list three priorities on which mental health research should focus. Responses were analysed using Leximancer, a text analytics tool, to examine the concepts and their connections across the data. A total of 365 people with lived experience of mental ill-health participated in the survey. The majority (57%) identified as consumers, with 14% identifying as carers and 29% reporting both types of lived experience. Participants were from all Australian states and territories and from metropolitan, regional and remote areas. The Leximancer analysis generated 30 concepts in six thematic priority areas. The most prominent themes were experience, treatment and impact, followed by stigma, peer and trauma. The concept maps displayed complex connections and interrelationships between specific concepts, with lived experience a large and central concept. Analysis of the textual responses emphasised the importance of examining specifics, as the nuanced research priorities traversed themes and concept across the maps. This project provides robust evidence on the central importance of experience as driving mental health lived experience research priorities. Further, it demonstrates that people with lived experience describe the key issues in complex