It takes it out of the textbook: Benefits of and barriers to expert by experience involvement in pre-registration mental health nursing education.

WHAT IS KNOWN ON THE SUBJECT?: Service user involvement in mental health nursing education is beneficial in terms of attitudinal change to reduce stigma, clinical skill development and enhancing understandings of recovery-oriented practice. Service users as experts by experience have not been embedded within pre-registration nursing programs. Consequently, they remain limited in number, ad hoc and frequently tokenistic. Nurse academics responsible for the design and delivery of pre-registration mental health nursing curricula have a potentially important role in facilitating expert by experience involvement in mental health nursing education. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE: Nurse academics teaching mental health nursing have generally favourable views about the importance of expert by experience involvement. Nurse academics experience significant barriers in supporting the implementation of academic positions for experts by experience, particularly in obtaining funding. The experts by experience could contribute to mental health nursing education does not appear to be clearly understood by nurse academics. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Mental health services aspire to adopt a recovery-oriented approach to practice. Involving experts by experience in mental health nursing education can facilitate increased understanding and appreciation of recovery-oriented practice. Nurse academics could play an important role in supporting the implementation of experts by experience positions in nursing academia. To do so, they require an understanding of the benefits of EBE involvement in academia and the barriers that can be encountered when attempting to facilitate the implementation of such positions. Experts by experience contribute unique expertise, essential to the development of quality mental health services. Conveying this expertise through the educating the future nursing workforce in mental health is essential. ABSTRACT: INTRODUCTION: Involving service users in mental health nursing education is ad hoc and minimal, despite growing evidence of its benefits. Insights and experiences of nurse academics teaching mental health to pre-registration students have been underrepresented in the research to date. AIM: To seek insights and experiences of nurse academics involved in designing and delivering pre-registration mental health nursing education in Australian universities regarding involving service users in mental health nursing education. METHODS: A descriptive qualitative study involving 19 nurse academics from 13 Australian universities, involved in pre-registration mental health nursing education. Data were analysed thematically. RESULTS: Participants reported minimal service user involvement. Most sought an increase and identified barriers. Data analysis resulted in five identified themes: (1) value-rich, (2) resource-poor, (3) imperfect processes, (4) 'part, but not all' and (5) unrecognised worth. CONCLUSIONS: Increasing meaningful involvement of service-users in mental health nursing education requires support and investment from multiple stakeholders. Nurse academics are crucial stakeholders in understanding the unique expertise service users bring. IMPLICATIONS FOR PRACTICE: Service users being central to all aspects of mental health services requires their active participation in the education of health professionals. Nurse academics have an important role in realising this goal.

Validation of the Consumer Health Activation Index (CHAI) in general population samples of older Australians.

Objective: To validate the 10-item Consumer Health Activation Index (CHAI), developed in the United States, as an activation measure for interventions targeted at the Australian older general population. Methods: The study was a cross sectional design. Exploratory factor analysis (EFA) was conducted on survey data from a community sample of participants (n = 250), aged 55-75 years. Confirmatory factor analysis (CFA) was used to evaluate dimensionality among a second sample of participants randomly sampled from the electoral roll (n = 571), aged 50-75 years. Associations between the CHAI and self-reported health behaviours were examined. Results: EFA revealed a 7-item, two-factor structure ('Health self-management' and 'Patient-provider engagement'). CFA indicated optimum model fit was obtained with this structure. Subscale reliability and validity were confirmed, with significant correlation to age, functional health literacy and health screening. Conclusion: In contrast to the original structure, optimum model fit was obtained with a two-factor solution and retention of seven items. The subscales have utility as a measure of health activation for tailoring of information in this group. Innovation: A freely-available, unidimensional health activation measure has demonstrated an underlying two-scale structure that will enable tailored approaches toward the enhancement and maintenance of self- and externally-managed health behaviours in an Australian population.

Perspectives of inpatients with palliative care needs, their families, clinicians and key stakeholders on measuring quality of hospital care via patient experience measures: A qualitative study.

BACKGROUND: Globally there are high numbers of patients with palliative care needs receiving care in hospitals. Patient reported experience measures (PREMs) provide useful data to guide improvement work. How to implement PREMs within palliative care populations is unclear. AIM: To explore the perspectives of inpatients with palliative care needs, their family members, and the clinical team regarding the use of a generic PREM as compared with a PREM designed for people with palliative care needs and related implementation factors. DESIGN: A qualitative study was undertaken using semi-structured interviews and focus groups and integrated thematic analysis. SETTING/PARTICIPANTS: Inpatients with palliative care needs, their family members, and clinical team members were recruited from three wards in an Australian metropolitan hospital. RESULTS: Twenty-seven interviews and three focus groups were conducted. Six themes emerged: (1) PREMs for people with palliative care needs ought to be tailored to the needs of this population; (2) PREMs should appraise whether the needs of families have been met in addition to those of patients; (3) PREMs for inpatients with palliative care needs ought to be easy to use, brief and incorporate space for free text alongside each question; (4) Implementation of PREMs for people with palliative care needs ought to consider who administers these, when and how often; (5) PREM data need to be specific enough to inform process change and/or care provision; (6) Patients and families require meaningful feedback to encourage PREM completion. CONCLUSIONS: This study provides practical guidance for PREM selection and implementation to inform improvements to care for inpatients with palliative care needs.

Modeling the intention and usage of medicine vending machine: Using partial least squares-structural equation modelling and necessary condition analysis.

Objective: This study aimed to investigate the factors influencing the intention to use and actual usage of medicine vending machines (MVMs) in China and to close the existing literature gap by examining the relationship between perceived convenience (PC), perceived trust, performance expectancy, effort expectancy, and social influence, on the intention to use MVM in a comprehensive manner. The impact of facilitating conditions on MVM adoption was also examined. Finally, customer age was tested as a moderator. Methods: This was a cross-sectional study that used data collected through a self-administered questionnaire. A combination of partial least squares-structural equation modeling (PLS-SEM) and necessary condition analysis (NCA) technique was used to analyze and discuss the 308 valid questionnaires, test the hypotheses, and conduct an in-depth analysis. Results: The results showed that PC, perceived trust, and performance expectancy were significantly related to the intention to use MVM. Effort expectancy was a non-significant predictor of intention to use MVM. Social influence was a significant negative predictor of the intention to use MVM. More importantly, performance expectancy was found to be a necessary factor for MVM intention, providing new marketing ideas for MVM owners. Age had a significant moderating effect on the facilitating conditions and intention to use vending machines. The relatively young population is more conscious of the facilitating conditions. Conclusions: The findings of this study are of considerable importance as a guide for the main user group of vending machines. The combined analysis and discussion of PLS-SEM and NCA provide a sound theoretical basis for the practical implications of this study. In the future, we will attempt to use this technique in other areas of study. In terms of theoretical implications, this study provides technical references for future research.

"Ngany Kamam, I Speak Truly": First-Person Accounts of Aboriginal Youth Voices in Mental Health Service Reform.

Aboriginal young people are experts in their own experience and are best placed to identify the solutions to their mental health and wellbeing needs. Given that Aboriginal young people experience high rates of mental health concerns and are less likely than non-Indigenous young people to access mental health services, co-design and evaluation of appropriate mental health care is a priority. Increasing Aboriginal young people's participation in mental health service reform is key to ensuring services are culturally secure, relevant and accessible. This paper presents first-person accounts from three Aboriginal young people who worked alongside their Elders and in a positive and constructive partnership with mainstream mental health services on a three-year participatory action research project in Perth, Western Australia, in Whadjuk Nyoongar boodja (Country). The young people recount their experiences as participants and co-researchers on a systems change mental health research project and share their views on the importance of privileging Aboriginal youth voices. Their accounts highlight that Aboriginal young people's participation and leadership must be understood through a decolonising lens and that working in genuine partnership with the community is key to increasing their contact and engagement with mental health care and improving mental health and wellbeing outcomes.

Establishing critical care nursing research priorities for three Australian regional public hospitals: A mixed method priority setting study.

OBJECTIVE: To determine key priorities for critical care nursing research in three Australian regional public hospitals, representing the shared priorities of healthcare professionals and patient representatives. METHODS: A three phase priority setting study, including consensus methods (nominal group), survey, qualitative interviews and focus groups were conducted between May 2021 and March 2022. Healthcare professionals and patient representatives from critical care units in regional public hospitals in Australia participated. A patient representative contributed to research design and co-authored this paper. RESULTS: In phase one, 29 research topics were generated. In phase two, during a nominal group ranking process, the top 5 priority areas for each site were identified. In the final phase, three themes from focus groups and interviews included patient flow through intensive care, patient care through intensive care journey and intensive care patient recovery. CONCLUSION: Identifying context specific research priorities through a priority setting exercise provides insight into the topics that are important to healthcare professionals and to patients in critical care. The top research priorities for nursing research in critical care in regional Australian hospitals include patient flow, patient recovery, and evidence based patient care through the intensive care journey, such as delirium management, pain and sedation, and mobilisation. These shared priorities will be used to guide future nursing research in critical care over the next 3-5 years. IMPLICATIONS FOR CLINICAL PRACTICE: The method we used in identifying the research priorities can be used by other researchers and clinicians; close collaboration among researchers and clinicians will be beneficial for practice improvement; and how we can be reassured that our practice is evidence based is worthy of attention.

Learning that cannot come from a book: An evaluation of an undergraduate alcohol and other drugs subject co-produced with experts by experience.

Alcohol and other drugs (AOD) use is a significant public health issue and is associated with high mortality and morbidity rates. Despite this, people who use drugs are often reluctant to seek care due to the lack of trauma-informed treatment and harm reduction treatment options, as well as experiences of stigma and discrimination in health services. Arguably, AOD education that is co-produced with people who use alcohol and drugs can enhance future health professionals' ability to practice in ways that support the needs of this population. This paper reports on a qualitative co-evaluation of a co-produced undergraduate nursing AOD subject. The AOD subject was co-planned, co-designed, co-delivered, and co-evaluated with experts by experience, who have a lived experience of substance dependence and work as advocates and peer workers. Following the delivery of the subject in 2021 and 2022, focus groups were undertaken with 12 nursing students. Focus group data indicate that the co-produced subject supported participants to understand and appreciate how stigma impacts on nursing care and how to recognize and undertake 'good' nursing care that was oriented to the needs of service users. Student participants noted that being co-taught by people who use drugs was particularly powerful for shifting their nursing perspectives on AOD use and nursing care and took learning beyond what could be understood from a book. Findings indicate that co-produced AOD education can shift nursing students' perceptions of AOD use by providing access to tacit knowledge and embodied equitable and collaborative relationships with people who use drugs.

Using consumer engagement strategies to improve healthcare safety for young people: An exploration of the relevance and suitability of current approaches.

BACKGROUND: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare-associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14-25 years) to improve their healthcare safety, with a focus on cancer care. METHODS: Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. RESULTS: Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being 'looked after' to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. CONCLUSION: For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. PATIENT OR PUBLIC CONTRIBUTION: Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities.

The impact of face-to-face mental health consumer-led teaching on occupational therapy student empathy levels: Two group comparison design.

INTRODUCTION: Australian and New Zealand accreditation standards for occupational therapy courses mandate consumer involvement in the design, delivery, and evaluation of courses. Consumer involvement in medical, dental, and nursing education has been evidenced as a factor for increasing student empathy. To date, there has been no known research on the impact of mental health consumer involvement on occupational therapy students' empathy. The aim of this study was to investigate if occupational therapy students who receive teaching from a mental health consumer demonstrate higher levels of empathy compared with students who receive teaching delivered by occupational therapy academics. METHODS: Pre-post, quasi experimental, two group comparison design was used to measure second-year student empathy pre and post a consumer-led teaching tutorial. Students (N = 217) were randomised into two groups across three university campuses: 'teaching as usual group' (control) or 'consumer-led' group (experimental group). The Jefferson Scale of Empathy was used to measure student empathy. RESULTS: N = 138 matched scales were returned. Little difference in empathy scales was detected between groups. The 'consumer-led' group increased for the empathy scale by 3.4(95% CI: 0.7,6.1, p = 0.014) but was not statistically significant compared to 1.3(95% CI: -1.0,3.5, p = 0.267) for the control group. Both groups scored highly on empathy. CONCLUSION: This study found that occupational therapy students had pre-existing high levels of empathy. The challenge for future research is to identify appropriate ways to measure the impact of mental health consumer involvement on occupational therapy curriculum and students.

Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography.

INTRODUCTION: Consumer and community involvement (CCI) encompasses the range of consumer engagement activities across the research cycle. Research advisory groups (RAGs) are a common method of CCI that may empower the consumer voice in research. However, there is limited evaluation of RAGs to guide occupational therapists considering this as a CCI strategy in research. The aim of this study was to explore the processes and outcomes of a RAG partnership for an eDelphi study. METHODS: Rapid ethnography enabled a rich, thick description of the RAG through triangulation of field notes, a monthly research team log, focus groups, and an individual interview. Data were analysed using reflexive thematic analysis. Recruitment targeted consumers, health service staff, and academics with experience in CCI to enhance the diversity of perspectives guiding the eDelphi study. The RAG met four times over 4 months. FINDINGS: Seven diverse RAG members were recruited resulting in a RAG of 12 members, including the research team that included two consumers. Reflexive thematic analysis resulted in an overarching theme: Different in so many ways, which reinforced that authentic CCI in research continues to be rare even for stakeholders with experience in CCI. There were four subthemes: Set up for success, Authentic and capable facilitation, Structures and strategies for genuine partnerships, and A ripple effect of benefits. Findings added to the limited research regarding RAGs and highlighted that a short-term RAG with 12 diverse stakeholders was an effective strategy to foster mutually beneficial and meaningful collaboration. Partnering with two consumer co-researchers in RAG planning, implementation, and evaluation was central to success. CONCLUSION: Findings demonstrated that with careful co-planning and recruitment, capable facilitation with support of a committed research team (inclusive of consumers), and empowering meeting processes and structures, a short-term RAG resulted in many benefits to participants and enhanced research outcomes.

Reimagining consumer involvement: Resilient system indicators in the COVID-19 pandemic response in New South Wales, Australia.

BACKGROUND: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. METHODS: In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. RESULTS: The pause in consumer engagement to support health service decision-making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. CONCLUSION: The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. PATIENT OR PUBLIC CONTRIBUTION: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.

Accessing the Influence of Consumer Participation on Purchase Intention Toward Community Group Buying Platform.

The rapid development of community group buying platforms has attracted a huge attention from both the practical and academic communities. Although previous research has explored the influence patterns of community group buying platform on the customers' purchase intention, there are limited studies on how customers' purchase intention is influenced by their participation behavior. Therefore, based on social identity theory, this study constructs a theoretical model of consumer participation influencing users' purchase intention through community identity in the community group purchase context, and examines the moderating role of users' privacy concerns in this process in conjunction with privacy concern theory to systematically explore the role of consumer participation on purchase intention and its boundary conditions. In this study, the data collected from 532 valid samples are analyzed by structural equation modeling. The results of the study found that customer engagement behavior had a significant effect on purchase intention through the mediation of community identity, where privacy concerns negatively moderated the effect of community identity on purchase intention. The study reveals the intrinsic mechanism of customer engagement influencing purchase intention and its boundary conditions, which provides the suggestions for the marketing management and business practice of community group platforms.

Consulting a Victorian Aboriginal community about their oral health.

BACKGROUND: The legacy of colonisation, assimilation, racism and victim blaming has created inequality in health for Aboriginal people, reflected in their oral health status. Despite the existence of community dental services, oral disease levels continue to be of concern. This study, initiated by a rural Victorian ACCHO (Aboriginal Community Controlled Health Organisation), aimed to consult their community about the barriers to and enablers of oral health and understand their lived experiences with dental services. METHODS: Using an Aboriginal knowledge framework and collaborative approach involving an Aboriginal researcher and Community Mentor, this study consulted an ACCHO community about their oral health. Following community engagement, 21 community members participated in digitally recorded yarning circles and semi-structured interviews. RESULTS: Themes emerging from the data included dental care history and past experiences involving pain and shame, the value of having community-centred services and engagement with patients and the community. DISCUSSION: Experiences of dental care are often related to pain driving attendance resulting in experiences that multiply fear and anxiety. While community-based care was considered a strength, approaches to individual dental care often resulted in increasing shame and diminishing trust. Increasing cultural safety and participatory approaches to designing and delivering dental care may increase engagement and trust. CONCLUSIONS: Important gaps in cultural and clinical understanding between the community and dental service providers have been identified. These findings will be used to inform the delivery of dental services and to develop oral health promotion programs at the ACCHO, and cultural safety preparation for student dental practitioners.

Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study.

BACKGROUND: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. AIM: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. DESIGN: An exploratory qualitative study, using semi-structured interviews. SETTING/PARTICIPANTS: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. RESULTS: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. CONCLUSIONS: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care.

Patient-centred care and patient autonomy: doctors' views in Chinese hospitals.

BACKGROUND: Patient-centred care and patient autonomy is one of the key factors to better quality of service provision, hence patient outcomes. It enables the development of patients' trusts which is an important element to a better doctor-patient relationship. Given the increasing number of patient disputes and conflicts between patients and doctors in Chinese public hospital, it is timely to ensure patient-centred care is fully and successfully implemented. However, limited studies have examined the views and practice in different aspects of patient-centred care among doctors in the Chinese public hospitals. METHODS: A quantitative approach was adopted by distributing paper-based questionnaires to doctors and patients in two hospitals (Level III and Level II) in Jinan, Shandong province, China. RESULTS: In total, 614 doctors from the surgical and internal medicine units of the two hospitals participated in the survey yielding 90% response rates. The study confirmed the inconsistent views among doctors in terms of their perception and practice in various aspects patient-centred care and patient autonomy regardless of the hospital where they work (category II or category III), their unit speciality (surgical or non-surgical), their gender or seniority. The high proportion of doctors (more than 20%) who did not perceive the importance of patient consultation prior to determining diagnostic and treatment procedure is alarming. This in in part due to the belief held by more than half of the doctors that patients were unable to make rational decisions and their involvement in treatment planning process did not necessarily lead to better treatment outcomes. CONCLUSION: The study calls for the development of system level policy and organisation wide strategies in encouraging and enabling the practice of patient-centred care and patient autonomy with the purposes of improving the quality of the service provided to patients by Chinese hospitals.

Enhancing person-centred care in inpatient mental health settings through supported person-side handover: a multi method study.

BACKGROUND: Many nursing contexts have introduced bedside handover, where the person in care participates in the transfer of clinical information, with benefits for person, carers, and clinicians. This type of handover has been implemented across a number of mental health settings, but there is limited evidence regarding implementation approaches or of practice change. This study reports the development and evaluation of a co-produced education and support package. AIM: To evaluate changes in nurses' practice regarding bedside (person-side) handover following implementation of a structured education and support package. DESIGN: Multi-method design incorporating nurse surveys and chart audit. METHODS: The survey and audit were conducted in 2019-2020 on two inpatient mental health units in a metropolitan health service immediately prior to, and 6 months after, implementation, with 70 survey responses and 52 files audited. Non-parametric tests assessed change, and text comments were reported. RESULTS: Significant improvements were observed in nurses' reports of confidence, the ability to maintain privacy, identified benefits for the person and in information transfer. In contrast, the chart audit identified no change in documentation of this practice. CONCLUSIONS: The implementation of a co-produced education and support package demonstrated positive practice change in engaging people receiving care in handover. This approach to handover provides increased opportunity for nurses to work in partnership with people receiving mental healthcare, facilitating collaborative person-centred care and shared decision making.

Nursing handover involving consumers on inpatient mental healthcare units: A qualitative exploration of the consumers' perspective.

Handovers between nurses are a significant cause of communication problems and possible consumer safety issues. A potential solution for both problems is the nursing handover involving consumers, in which the consumer is present at the time of handover. This practice invites consumers to be more involved in their care process and supports a recovery-oriented practice. Research into nursing handovers involving consumers on inpatient mental health units is however very limited. A qualitative, phenomenological study was conducted. Semi-structured interviews with 13 consumers staying on an inpatient mental health unit of a general hospital were used. The interviews were transcribed verbatim and thematically analysed. Data saturation was reached after 11 interviews when no new themes or codes emerged from the data. Three themes were generated from the interviews: (i) the first moments on the inpatient mental health unit; (ii) the nurse as an ally; and (iii) informing each other. The COREQ-checklist was used. According to consumers, nursing handover involving consumers initiated a change in the relationship between consumers and nurses. Consumers and nurses got to know each other better during handover and built a relationship of trust. The introduction of nursing handover involving consumers created an accessible opportunity for consumers to exchange information with nurses and ask questions concerning their admission. Consumers felt jointly responsible for the continuity of the information about their healthcare process. Due to the use of nursing handover involving consumers, consumers experienced the opportunity to take more control in their health process and ensured that information is correct and complete.

Towards epistemic justice doing: Examining the experiences and shifts in knowledge of lived experience researchers over the course of a mental health research training programme.

Participation of people with lived experience (LE) in mental health research is vital for improving the quality and relevance of research priorities, outcomes, and knowledge translation. Inclusion of people with LE is also recognized as central for achieving health service reform including commitments to human rights, social, and epistemic justice. Although a lack of research training is cited as a barrier to LE participation, few studies have examined the value of training for, or the specific requirements of, people with LE. This study seeks to address this gap. It reports on a longitudinal, qualitative study examining shifts in experience and knowledge, and unmet needs, of people with LE over the course of a coproduced research training programme. Findings indicate that the programme enabled participants to understand the role, value, and levels of LE participation in research. Participants also stressed the importance of the 'embodied lived expertise' of LE researchers who co-delivered the training programme. Nonetheless, participants indicated that they felt unprepared for the challenges of working in systems where LE knowledge is subordinated, and experiences of being silenced and powerless could mirror those previously experienced in mental health services and the community. Participants indicated a need for training that provided them with the epistemic resources to render such experiences intelligible. Findings also indicate that training in participatory research is required for conventional mental health researchers, to support them to navigate power asymmetries and value LE knowledge contributions.

Patient partners' perspectives of meaningful engagement in synthesis reviews: A patient-oriented rapid review.

BACKGROUND: A growing literature describes promising practices for patient-oriented research (POR) generally; however, those for systematic reviews are largely derived through the lens of a researcher. This rapid review sought to understand meaningful engagement in synthesis reviews from the patient partner (PP) perspective. DESIGN: The review team comprised PPs, librarians, SCPOR staff and academic faculty. We searched OVID MEDLINE and EMBASE, ProQuest Nursing and Allied Health, and core POR websites. Documents describing PP reflections on their involvement in synthesis reviews were included. Screening and data extraction were conducted by two independent reviewers. Thematic analysis was employed to identify themes in the data regarding PP perceptions of engagement in synthesis reviews. RESULTS: The literature search yielded 1386 citations. Eight journal articles and one blog post were included. Seven studies focused on conducting systematic reviews on a particular health or patient-related topic to which PP involvement was an important part and two studies focused specifically on the experience of including PP in synthesis reviews. PPs engaged in the review process through a variety of mechanisms, levels and stages of the review process. Three major themes emerged from the data: (1) foster partnerships through team development, (2) provide opportunities for outcomes valued by PP and (3) strengthen the research endeavour. CONCLUSION: Fostering partnerships through team development is foundational for meaningful engagement in synthesis reviews. It requires sensitively balancing of various needs (eg overburdening with contributions). Meaningful involvement in reviews has both personal and research benefits. PATIENT INVOLVEMENT: Patient partners were equal collaborators in all aspects of the review.

Comparing Perceptions of Patient Nonparticipation in Nursing Care: A Secondary Analysis.

PURPOSE: Patient participation is characterized by dyadic patient-nurse interactions that enable patients to passively or actively participate in communicative and physical care activities. Less research has been conducted on nonparticipation. Examining this phenomenon may highlight issues to address and identify strategies that may ultimately promote patient participation and move the rhetoric of patient participation to a reality. The aim of this secondary analysis was to explore hospital patients' and nurses' perceptions of nonparticipation in nursing care specifically focused on communication and self-care. DESIGN: Secondary supplementary analysis of qualitative data. We collated original transcripts from one dataset that included 20 patient and 20 nurse interviews conducted at two hospitals in Australia, in November 2013 to March 2014. METHODS: Interviews were arranged into units of analysis dependent on group (patient/nurse) and setting (public/private hospital) and were reanalyzed using manifest, inductive content analysis. FINDINGS: Two categories were found: (a) nurses impeding two-way clinical communication; and (b) patients and nurses disregarding patients' self-care efforts. These categories describe that nonparticipation occurred when nurses inhibited communication, and when patients were not involved in self-care while hospitalized or during discharge planning. CONCLUSIONS: Perceptions of nonparticipation differ across settings, having implications for how patient participation recommendations are enacted in different contexts. CLINICAL RELEVANCE: There is no one-size-fits-all approach; nurses need to identify common instances of nonparticipation within their setting and develop and implement strategies to promote patient participation that are suited to their context.