Our Wished-for Responses: Recommendations for Creating a Lived and Embodied Sense of Safety During Mental Health Crisis.

BACKGROUND: Medical interventions have a place in crisis support; however, narrow biomedical and risk-driven responses negatively impact people seeking crisis care. With increasing shifts towards involving people with lived experience (service users) in designing services, foregrounding people's desired responses is critical. Accordingly, the aim of the study was to explore the wished-for crisis responses from the perspective of people who have experienced crisis and accessed crisis care. METHOD: Using a hermeneutical phenomenological approach, in-depth interviews were conducted to determine the desired crisis responses of 31 people who self-reported experiencing mental health crises and accessed crisis services at ED, phone lines and/or crisis alternatives. RESULTS: The findings identified wished-for responses that gave a felt and embodied sense of their own safety influenced by a human-to-human response, emotional holding, a place of safety and choice within holistic care. For such responses to be possible, participants identified organising principles, including recognising crisis as meaningful and part of our shared human experience, understanding risk as fluid and a whole-of-community responsibility for responding to crises. CONCLUSION: This paper proposes how insights from people who have experienced crises can be translated into more beneficial crisis care. PATIENT OR CONSUMER CONTRIBUTION: Most authors are in identified lived experience roles. The first author engaged with participants during the recruitment and interviews and was explicit regarding their lived experience. Service users were involved as advisors, providing input throughout the study.

'People Just Need to Try It to Be Converted!': A Picture of Consumer Mental Health Research in Australia and New Zealand.

A range of barriers that impede collaborations between consumer researchers and other researchers have been identified, despite clear acknowledgement of the benefits of this approach in the literature. Recent research has questioned whether the costs of collaborative research outweigh the benefits. The overarching aim of the current study is to better understand non-consumer researchers' attitudes to, and issues concerning, engagement with consumer researchers. Non-consumer researchers from mental health disciplines were invited to participate in the cross-sectional Consumers as Researchers in Mental Health survey, and to respond to open-ended questions about their experiences of collaborative research with consumer researchers. The findings demonstrate a range of benefits associated with collaborations with consumer researchers - including increased relevance and credibility of research, and greater translation of research findings into changes in health policy, service, research and education. Collaborations were found to be varied and not limited by research design, decision-making styles, or research topic. Understanding these benefits within the context of identified barriers can make an important contribution to the proliferation of mental health consumer researcher roles.

Understanding the Role of Allies in Systemic Consumer Empowerment: A Literature Review.

Contemporary mental health policies call for the inclusion of consumers in the development, implementation and evaluation of mental health services. Barriers to systemic consumer engagement have been related to unequal distributions of power. One of the goals of the consumer movement is to address imbalances of power, resources and knowledge. Empowerment through consumer leadership in the mental health sector has been identified as a fundamental goal of the consumer movement and has been considered the philosophical basis for alternative models of mental health care. However, currently such systemic empowerment is poorly understood, assuming diverse and at times contradictory definitions within mental health literature. The role of allies as facilitators of systemic empowerment opportunities has been recognised and valued within numerous social movements. Currently, there is a lack of research in regards to the potential role of allies in the consumer movement and more specifically in systemic consumer empowerment. Future research should seek to more clearly define systemic consumer empowerment. Additionally, future research collaborations between consumer and ally perspectives should specifically investigate the role of allies in systemic consumer empowerment, to highlight potential opportunities and limitations.

The stigma of identifying as having a lived experience runs before me: challenges for lived experience roles.

BACKGROUND: Lived experience practitioners can contribute to improved outcomes for people with mental illness, supplementing traditional mental health services and reducing health care costs. However, lived experience practitioners frequently face stigma and discrimination within their work roles. AIM: To understand the impact of stigma and discrimination on the effectiveness of lived experience roles from the perspective of lived experience practitioners. METHOD: In-depth interviews were conducted with 13 lived experience practitioners within a grounded theory study. RESULTS: Issues of stigma and discrimination were identified as a core category of this study. Participants described stigma and discrimination so prevalent as to be considered a "normal" part of their working life. Professional isolation and attitudinal barriers from colleagues were seen to inhibit the effectiveness of lived experience roles. CONCLUSIONS: Lived experience practitioners can provide a vital contribution to stigma reduction broadly, however, the stigma and discrimination they face within work roles must be addressed to allow this contribution to be effective.

"Chipping away": non-consumer researcher perspectives on barriers to collaborating with consumers in mental health research.

BACKGROUND: Collaboration between researchers who have lived experience of mental illness and services (consumer researchers) and mental health researchers without (other mental health researchers) is an emergent development in research. Inclusion of consumer perspectives is crucial to ensuring the ethics, relevancy and validity of mental health research; yet widespread and embedded consumer collaboration of this nature is known to be impeded by attitudinal and organisational factors. Limited research describes consumer researchers' experiences of barriers. Other mental health researchers are key players in the co-production process yet there is also a paucity of research reporting their views on barriers to collaborating with consumers. AIMS: To explore other researchers' views and experiences on partnering with consumer mental health researchers in Australia and New Zealand. METHODS: Exploratory qualitative design. Eleven semi-structured interviews were conducted with mental health researchers. Interviews were recorded, transcribed and thematically analysed. RESULTS: Four themes concerning barriers to collaborating with consumers (hierarchies, status quo, not understanding, paternalism), and one theme on addressing the barriers (constantly chipping away) were identified. CONCLUSIONS: It is suggested that multifaceted strategies for advancing collaboration with consumers are most effective. It is imperative to attend to several barriers simultaneously to redress the inherent power disparity.

Mental Health Researchers' Views About Service User Research: A Literature Review.

Services users are becoming actively involved in mental health research. How this is perceived by other researchers is not well known. The aim of this article is to review the international literature exploring other mental health researchers' views of service users conducting research, between 1996 and 2016. Searches of multiple databases (PubMed, PsycINFO, CINAHL, and Google Scholar) were undertaken. Combinations of terms related to service user research and mental health researcher perspectives, views, and attitudes were used. Manual inquiry of reference lists was also undertaken. Relevant papers were coded by topic, location, study design, and other dimensions. Five articles met inclusion criteria. Most referred to perceived benefits, such as greater validity of research findings, challenges of collaborating with service users, and the validity of research findings. There was some evidence of more openness to mental health service users providing suggestions, preferably in early stages of the research process. Reluctance to co-research with service users was reported. There is limited research directly addressing other mental health researchers' views about service user research; barriers to inclusion (whether involvement, co-production or user-controlled) and creating incongruence with health policy statements. Further research to more fully understand these attitudes and how they might be influenced is warranted.

Turning the Tables: Power Relations Between Consumer Researchers and Other Mental Health Researchers.

A crucial development resulting from consumer involvement in mental health services has been engagement as active participants in mental health research, often conducted in collaboration with mental health researchers representing the health disciplines (referred to in this paper as 'other' researchers). Despite progress in mental health consumer research, unequal power relations continue to pose a major barrier. Although power issues are discussed in the literature, there is little research from the perspective of other mental health researchers who have collaborated with consumers on research projects. This qualitative study explored other mental health researchers' perspectives on the role of power in collaborative research with consumers. Semi-structured interviews were completed with 11 other mental health researchers. Thematic analysis of the transcript version of interview recordings was conducted. The findings were grounded in 'the table' as a literal and metaphorical site of power relations. The umbrella theme was prominence and presence (of consumers) at the table, followed by subthemes on barriers (tokenism, undermined potential) and surmounting them through reworking power (critical mass and openness to power dynamics). Overall it was found that while there continue to be significant power-related barriers to further building of robust collaborative research with consumers in mental health, there are several avenues that should be considered, much more assertively, to disrupt and transcend them.

DEFINING SECLUSION AND RESTRAINT: LEGAL AND POLICY DEFINITIONS VERSUS CONSUMER AND CARER PERSPECTIVES.

The practices of seclusion and restraint may be used in a variety of health settings to control behaviour. Laws and policies that seek to regulate these practices define seclusion and restraint in various ways and there are gaps as to which practices are regulated and in what circumstances. This column provides an overview of consumer and carer perspectives as to what is meant by these practices.

Helpful encounters with mental health nurses in Australia: A survey of service users and their supporters.

WHAT IS KNOWN ABOUT THE SUBJECT?: Most nurses who work in mental health in Australia have completed a comprehensive nursing programme at a university. This training has been widely criticized and has not produced "job-ready" graduates. Public inquiries into mental health services have highlighted the need for transformation of mental health services and concern about future nursing shortages. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: This survey highlights what service users and supporters perceive are useful nursing skills and capabilities. The characteristics of helpful encounters with nurses are also described. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Helpful nursing practice is aligned with traditional nursing values and theory, rather than the performance of specific tasks. Improving the retention of nurses to this specialty area of practice requires educational processes to enable nurses to enact values, develop their therapeutic potential and undertake facilitative and supportive practices which are helpful to service users. ABSTRACT: INTRODUCTION: Successive inquiries into mental health services in Australia have identified the need for major reform of services and proposed a return to direct-entry nursing training. AIM/QUESTION: To identify what service users, family and supporters have found helpful in their encounters with nurses in mental health settings. METHOD: A survey of 95 service users and supporters rated the importance of the capabilities and competencies of nurses. They also shared examples of helpful encounters with nurses which were subject to thematic analysis. RESULTS: The most highly rated competencies were around demonstrating caring, empathy and understanding, and responding effectively in crisis situations. Helpful encounters involved enacted values, highly skilful interpersonal and psychotherapeutic engagement and practices that were facilitative and supportive. DISCUSSION: The process and content of pre-registration nursing training needs to refocus on the nurse meeting the needs of service users and supporters, rather than the instrumental needs of services today. IMPLICATIONS FOR PRACTICE: Educational reform may be necessary but insufficient to address anticipated nursing workforce shortages. Policymakers and health service directors need to align services with mental health nursing values and promote practices aligned with what service users and their supporters report as helpful.

Mental health nursing capability development: Perspectives of consumers and supporters.

Mental health nursing requires a specialist range of capabilities and values. In Australian contexts, the preparation of nurses to work in mental health settings has attracted criticism from government reviews, academics, and graduate nurses. Insufficient mental health content and clinical placement experience in undergraduate nursing courses have been central to this criticism. The study aim was to identify the areas and modalities of capability development of graduate mental health nurses, from the perspectives of end point users. In order to meet the aim, a four-item cross-sectional online survey with three additional and open-ended questions was developed. The questions were co-designed with consumer academics and reviewed by consumer and carer organizations. The survey was widely distributed across Australian consumer and carer organizations, with 95 useable responses. Findings indicated strong support for lived experience being integrated into teaching teams for nurses, as well as support for undergraduate direct entry for mental health nursing. Themed content from open-ended responses reflected the survey outcomes as well as prioritizing skill development to support better therapeutic relating and nurse self-care. Key findings included strong support for greater lived experience input into mental health nurse education, specialist undergraduate preparation and a focus on developing relational capabilities in the mental health nurse workforce.

Design features that reduce the use of seclusion and restraint in mental health facilities: a rapid systematic review.

Increasing efforts are being made to prevent and/or eliminate the use of seclusion and restraint in mental health facilities. Recent literature recognises the importance of the physical environment in supporting better outcomes in mental health services. This rapid review scoped the existing literature studying what physical design features of mental health facilities can reduce the use of seclusion and physical restraint. DESIGN: A rapid review of peer-reviewed literature. METHODS: Peer-reviewed literature was searched for studies on architectural design and the use of restraint and seclusion in mental health facilities. The following academic databases were searched: Cochrane Library, Medline, PsycINFO, Scopus and Avery for English language literature published between January 2010 and August 2019. The Joanna Briggs Institute's critical appraisal tool was used to assess the quality of included studies. RESULTS: We identified 35 peer-reviewed studies. The findings revealed several overarching themes in design efforts to reduce the use of seclusion and restraint: a beneficial physical environment (eg, access to gardens or recreational facilities); sensory or comfort rooms; and private, uncrowded and calm spaces. The critical appraisal indicated that the overall quality of studies was low, as such the findings should be interpreted with caution. CONCLUSION: This study found preliminary evidence that the physical environment has a role in supporting the reduction in the use of seclusion and restraint. This is likely to be achieved through a multilayered approach, founded on good design features and building towards specific design features which may reduce occurrences of seclusion and restraint. Future designs should include consumers in a codesign process to maximise the potential for change and innovation that is genuinely guided by the insights of lived experience expertise.

Establishing an expert mental health consumer research group: Perspectives of nonconsumer researchers.

PURPOSE: To explore the views and opinions of nonconsumer researchers to the concept of an Expert Consumer Researcher Group. DESIGN AND METHODS: Qualitative exploratory involving individual interviews with nonconsumer mental health researchers experienced in working collaboratively with consumer researchers. Data were analyzed thematically. FINDINGS: Participants viewed the concept positively, albeit with caution. Perceived advantages included: greater visibility and enhanced access; collegiality; sharing and creating expertise; broader acceptance; making it mandatory; and structure and location. Participants were concerned about potential tokenism and implementation barriers. PRACTICE IMPLICATIONS: Consumer involvement enhances the quality and relevance of research, potentially impacting clinical practice.

Authentic engagement: A conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research, policy, and practice.

As involvement of consumers/survivors in planning, delivery, and evaluation of services has increased, expectations of authentic and effective engagement, versus tokenism, have also risen. Different factors contribute to, or detract from, authentic engagement. Writing from mental health consumer/survivor and nursing positioning, respectively, we aim to redress the common problem of including only a narrow range of views and voices. This paper introduces a conceptual model that supports leaders in research, clinical, service, and policy roles to understand the necessity of engaging with a broader spectrum of consumer/survivor views and voices. The model draws on published consumer/survivor materials, making explicit diverse experiences of treatment and care and identifying the subsequent rich consumer/survivor advocacy agendas. We propose that strong co-production is made possible by recognizing and welcoming consumer/survivor activist, facilitator, transformer, and humanizer contributions. The conceptual model forms the basis for a proposed qualitative validation project.

'It is always worth the extra effort': Organizational structures and barriers to collaboration with consumers in mental health research: Perspectives of non-consumer researcher allies.

Consumer collaboration in mental health research has demonstrated significant benefits and reflects both contemporary research practice and policy goals for the expected genuine involvement of consumers in all aspects of mental health service delivery. Notable barriers have been identified as impeding consumer researcher positions that must be better understood and ultimately addressed. The aim of this research was to better understand these barriers from the perspectives of non-consumer researchers who have worked collegially with consumer researchers. We developed a self-report survey, Consumers as Researchers in Mental Health (CaRiMH) and administered it to non-consumer mental health researchers in Australia and New Zealand. Findings suggest a lack of organizational structures to support both consumer research and capacity building of consumer researchers. Most consumer researchers were employed casually with no set hours. Although consumer researchers were typically remunerated, inadequate funding and inflexibility of employment were highlighted as major barriers. There was variation in opinion about token involvement of consumer researchers and some uncertainty about whether these roles, where they existed, were actively resisted. Despite the acknowledged barriers, participants were positive about collaborations with consumer researchers. Overall, findings suggest consumer research is unlikely to proliferate without greater attention to organizational structures. A systematic and strategic approach to advancing mental health consumer research is required, including extra-organizational policy factors.

'They can't empower us': The role of allies in the consumer movement.

Goals of the mental health consumer movement include redressing inequality and increasing consumer leadership across the mental health sector. A means of achieving these goals is empowerment of consumers at systemic levels of the mental health sector. There have been calls for research to focus on allies - those who use their power to support and advocate for the goals of the consumer movement. This study aimed to examine the role of allies in consumer empowerment. Semi-structured interviews were conducted with 15 individuals (including three consumers, nine allies, and three participants each identifying as both consumer and ally). Findings suggest that allies cannot directly empower consumers but should support opportunities for consumer leadership within the sector. We discuss how allies might do this and avoid paternalism in their allyship.

Consumer recommendations for enhancing the Safewards model and interventions.

This paper critiques the Safewards model through the lens of lived experiences of psychiatric hospitalization, diagnosis of mental illness, and distress. Special focus is given to the model's tested 10 interventions and to five lesser known interventions, identifying the impact they can have on hospitalized consumers. We highlight the role and prevalence of trauma, as well as the need to prevent harm in hospital settings. We draw upon notions of hospital as a sanctuary for people and the importance of providing a safe ward. 'Sanctuary harm' and 'Sanctuary trauma' are thus defined, with emphasis placed on the Safewards interventions as means by which sanctuary can be achieved. Finally, the consumer-perspective authors propose expansions to the model, critiquing the defining literature and moving towards a consumer experience of safety that is beyond the model's original intention: to reduce seclusion and restraint practices. Throughout the paper, the term 'consumer' is used in this context to mean people who have experienced or are experiencing psychiatric inpatient care.

'There's just no flexibility': How space and time impact mental health consumer research.

Non-consumer researchers collaborating with consumer researchers can benefit from greater relevance of research and improved congruence between research processes and health policy. As with all research collaborations, such partnerships are both constrained and facilitated by research ecosystems. However, it seems that collaborations with consumer researchers are impacted in particular ways by the research ecosystem. Drawing on ecological systems theory, this study aims to improve understandings of how ecological structures impact collaborations between non-consumer and consumer researchers. Interviews were conducted with 11 non-consumer researchers from a range of mental health disciplines about their experiences collaborating with consumer researchers. One theme developed through analysis of the data set related to the research ecosystem. Data from this theme were extracted and discursively analysed using the principles of discursive psychology. Findings emphasize distinct factors that influence collaborations at each level of the ecosystem, encompassing both local research culture and broader research systems. Findings suggest that external pressures (such as deadlines for funding applications, or bureaucratic processes) from the broader ecosystemic levels need to be challenged at the local collaboration level. Non-consumer researchers might support collaborations through, for instance, working to create enhanced flexibility in research timelines, or making time for relationship building, thus fostering more meaningful collaborations.

Very useful, but do carefully: Mental health researcher views on establishing a Mental Health Expert Consumer Researcher Group.

WHAT IS KNOWN ON THE SUBJECT?: Contemporary mental health policy stipulates consumer participation in all aspects of mental health services including service evaluation and other forms of mental health research. Research is identified as underpinning quality mental health services, and therefore, consumers researchers could enhance the mental health sector by contributing to the quality, credibility and relevance of mental health research. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Non-consumer researchers generally supported the concept of a consumer expert reference group for researchers at the individual and institutional level. A consumer expert reference group should reflect diversity and offer expertise relevant to the topic of research and may represent one way to normalize partnerships with consumer researchers and realize the benefits they can bring to research. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Quality mental health services are underpinned by robust research evidence. It is crucial that consumers are active participants in research activity. The availability of a consumer expert reference group could facilitate collaborations between consumer and non-consumer researchers and contribute to a stronger consumer focus embedded in mental health research. Abstract Introduction Contemporary mental health policy identifies consumers as active participants in all aspects of mental health services from design to evaluation. Consumer researchers should be actively involved in mental health research and contribute to quality service delivery. Aim To gain a snapshot of mental health researcher views on strategies for increasing research by or with consumers in mental health through the establishment of an Expert Consumer Researcher Group (ECRG). Methods Cross-sectional survey of 41 non-consumer mental health researchers from Australia or New Zealand. Results The introduction of an ECRG was considered an effective strategy for linking consumer and non-consumer researchers and providing specialist advice on research design and methodology. The most suitable location for this group was identified as within consumer advocacy agencies (71%), universities (66%) or research funding bodies (66%). Participants rated their likelihood of seeking advice from the ECRG as high. Discussion Research participants supported the value of an ECRG. They emphasized the importance of ensuring the group reflected a diversity of views and offered specialized expertise related to the specific topic. The ECRG could benefit both individual researchers and larger research organizations. Implications for practice An ECRG could facilitate collaborations with consumer researchers and in turn enhance the quality of mental health research.

"I don't think we've quite got there yet": The experience of allyship for mental health consumer researchers.

WHAT IS KNOWN OF THE SUBJECT: Consumer participation in mental health services is an expectation articulated through mental health policy. Consumers as researchers could contribute significantly to mental health services. Barriers to participation are significant and limit consumer involvement. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE: Enhanced understandings of collaborative relationships between consumer and nonconsumer researchers. Researchers from the health disciplines find value in consumer involvement in mental health research. These researchers can support and facilitate consumer research by being allies to consumer researchers. WHAT ARE THE IMPLICATIONS FOR PRACTICE: Understanding the role of allies is necessary to strengthen their capacity to support consumer researchers. Involving consumers in mental health research is likely to lead to improved practice. ABSTRACT: Introduction Australia and New Zealand mental health policy requires consumer participation in all aspects of mental health services. Systemic participation informs and improves the quality of mental health services. Collaboration with consumer researchers should be similarly required. Enhanced understandings of collaborations are needed. Aim To enhance understanding of the perspectives and experiences of nonconsumer researchers in working collaboratively with consumers as researchers. Method This qualitative exploratory study involved interviews with nonconsumer mental health researchers who have worked collaboratively with consumers in research. Interviews were conducted with participants from Australia and New Zealand. Results "Allyship" emerged as a major theme. This describes nonconsumer researchers playing an actively supportive role to facilitate opportunities for the development and growth of consumer research roles and activities. Seven subthemes were identified: establishing and supporting roles, corralling resources, guiding navigation of university systems, advocacy at multiple levels, aspiring to coproduction and consumer-led research, extending connections and partnerships, and desire to do better. Discussion Allyship may have an important role to play in the broader consumer research agenda and requires further consideration. Implications for practice Embedding meaningful consumer participation within mental health services requires active consumer involvement in research. Allies can play an important facilitative role.

How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers.

Coproduction of research between consumers of mental health services and nonconsumer mental health researchers is increasing. There is some research available describing consumer perspectives of this experience. However, there is a notable lack of research on other (nonconsumer) researcher experiences of and views about consumer involvement in coproduced research. A qualitative exploratory study was undertaken to examine perspectives of mental health researchers about consumer involvement in research. In-depth individual interviews were undertaken with 11 nonconsumer mental health researchers in Australia and New Zealand. Interview transcripts were analysed to identify major themes. There were three interacting themes: the salience of experiential difference, expanded learning, and enhanced research. The dynamic between different perspectives and learning had the effect of enhancing research across the spectrum of study phases and in ensuring research was of value to different groups. The findings emphasize the important contribution consumer researchers can make to mental health research by bringing their unique perspective and enhancing an environment of mutual learning. Findings also point to the need for foregrounding the numerous benefits of joint research between consumer and other researchers to enhance and improve clinical practice and the development of policy.