Improving Service User Involvement in Mental Health Nursing Education: Suggestions from Those with Lived Experience.

Service user involvement in mental health nursing education is increasing and a developing evidence base is demonstrating more positive attitudes towards people labelled with a mental illness. To date, most research on this approach has focussed on the perspectives of nursing students, with very limited research drawing on the expertise and opinions of service users. The aim of this study was to explore potential improvements in mental health nursing education, and ways service user involvement can be enhanced as defined by service users themselves. An international qualitative research project was undertaken involving focus groups with service users (n = 50) from Australia and five European countries. The research was coproduced between Experts by Experience (service users) and mental health nurse academics. Data were analysed thematically. Findings reflected two broad themes: (1) improvements to content, including: further emphasis on developing emotional intelligence, understanding mental distress and broader context of care; (2) Improvements to service user involvement, including: support, format, and teaching and learning techniques. These findings provide direction for maximising the benefits of service user involvement and show the value of the expertise of service users.

"But I'm not going to be a mental health nurse": nursing students' perceptions of the influence of experts by experience on their attitudes to mental health nursing.

BACKGROUND: Mental health nursing skills and knowledge are vital for the provision of high-quality healthcare across all settings. Negative attitudes of nurses, towards both mental illness and mental health nursing as a profession, limit recognition of the value of these skills and knowledge. Experts by Experience have a significant role in enhancing mental health nursing education. The impact of this involvement on attitudes to mental health nursing has not been well researched. AIM: To explore the impact of Expert by Experience-led teaching on students' perceptions of mental health nursing. METHODS: Qualitative exploratory study involving focus groups with nursing students from five European countries and Australia. RESULTS: Following Expert by Experience-led teaching, participants described more positive views towards mental health nursing skills and knowledge in three main ways: learning that mental health is everywhere, becoming better practitioners, and better appreciation of mental health nursing. CONCLUSIONS: Experts by experience contribute to promoting positive attitudinal change in nursing students towards mental health nursing skills and knowledge. Attitudinal change is essential for the provision of high-quality mental health care in specialist mental health services and throughout the healthcare sector.

'Not in the room, but the doctors were': an Australian story-completion study about consumer representation.

Current mental health policy requires consumer involvement in all levels of health service management (i.e. planning, implementation, delivery and evaluation). However, current models often limit consumers to 'representation' roles that are criticized for silencing consumer views. This study compares understandings of consumer representatives' and health professionals' participation in decision-making processes in the mental health sector in Australia. Story completion methods were employed, with 34 participants (21 consumers, 8 health professionals and 5 people identifying both as consumer and health professional) completing a story stem about either a consumer representative or a health professional changing a committee meeting agenda. Using a thematic approach, three overarching themes were developed: how consumer representative roles remain unvalued, how such lack of value translates to not achieving co-production and how consumer representative roles can be better supported through allyship or subversion against organizational cultural norms. Findings suggest that organizational cultural norms in health settings need to be more inclusive of consumers to maximize the benefits of partnerships and fulfil policy expectations. Two methods for greater empowerment of consumers working in mental health are through allyship with non-consumer health professionals who support the goals of the consumer movement, and subversion of current practices.

The tyranny of difference: exploring attitudes to the role of the consumer academic in teaching students of mental health nursing.

Background: Consumer participation in mental health service delivery is now a policy expectation. Negative attitudes of health professionals towards collaboration with consumers have been identified as a major barrier to policy implementation. Consumers contributing to the education of nurses and other health positions have been identified as an effective strategy, particularly when consumers occupy academic positions. Attitudes of nurse and consumer academics to the consumer academic role remain under-researched.Aims: To explore the implementation of a consumer academic position from the perspectives of the broader academic team.Methods: Qualitative exploratory research was undertaken to give voice to different perspectives of the implementation of a consumer academic position. In-depth interviews were conducted with nurse academics, the consumer academic and the research team.Results: Thematic data analysis revealed five main themes: seeking a united perspective; who can provide a consumer perspective? How accurate is consumer perspective? One consumer, one opinion, one way, one delivery; bias and poor portrayal of nurses.Conclusions: Marked divergence in views and opinions was evident in terms of support for the role and its perceived value. Further investigation of factors facilitating successful implementation is required and strategies identified to facilitate mutual understandings and goal setting.

Rhetoric of representation: the disempowerment and empowerment of consumer leaders.

Policy mandates consumer involvement in decisions at all levels of the mental health system. One barrier to this involvement is the expectation that consumers involved in systemic work represent broader consumer experiences. To examine how the rhetoric of 'representation' was used in relation to consumer involvement in mental health, a qualitative exploratory design was employed using interviews for data collection. Participants were consumers (n = 6) working with public or private mental health organizations in Australia, and colleagues (n = 3) or managers (n = 5) of these consumers. Discursive psychological principles informed the analytic process, to explore contexts in which 'representativeness' was used to empower and disempower consumers. The findings suggest there is a lack of clarity about what is meant by representation in the mental health sector. Expecting individual consumer leaders to be representative of consumer views more broadly disempowered them in their roles. Some participants instead discussed ways that organizations should be responsible for seeking representation from more consumer leaders, thus empowering consumers working in the sector. Using the term 'representative' to refer to consumers working in mental health does not reflect the value of the consumer perspective and is not well understood within the sector. Comprehensive training should be provided so that mental health service providers are clear regarding the expectations of people in these roles.

Consumers at the centre: interprofessional solutions for meeting mental health consumers' physical health needs.

Interprofessional care and consumer-oriented services are embodied in modern healthcare policy and practice. The views, needs, and values of consumers are essential to ensuring translation of policy to practice. This is particularly pertinent for people diagnosed with mental illness who experience a higher risk of physical health problems and premature death. A qualitative, exploratory research project was conducted, involving focus groups with members of a mental health consumer group in the Australian Capital Territory. Participants were asked about their experiences and opinions in relation to physical health and care and treatment provided. Focus group transcripts were thematically analysed. Three themes arose via analysis: (1) Meeting diverse physical healthcare needs, where mental health consumers connect with many types of healthcare providers, conventional and non-conventional, (2) centre of the interprofessional team for holistic care, where there is preference for a consumer-centred group effort in addressing health issues as the model of care, and (3) more gateways, less gatekeeping, where points of access were affected by cost, place and gatekeepers could be enabling. People with mental illness seek enhanced collaboration between a broader range of health professionals, with potential to contribute to their overall health and well-being.

Promoting the Value of Mental Health Nursing: The Contribution of a Consumer Academic.

Mental illness is known to occur frequently in the general population and is more common within the general health care system. High-quality health care requires nurses to have the skills, knowledge and attitudes to provide care for people experiencing mental illness or mental distress. Research suggests health professionals, including nurses, tend to share similar negative attitudes to mental illness as the general population, and consequently, mental health nursing is not a popular career path. These two factors signify a need to influence more positive attitudes toward mental illness and mental health nursing among nursing students. A qualitative exploratory research study was undertaken to examine the experiences, opinions and attitudes of an academic and research team to the introduction of a consumer academic within an undergraduate mental health nursing subject. In-depth interviews were conducted with teaching and research team members. The importance of mental health skills emerged as a major theme and included sub-themes: mental health across the health care system; contribution of consumer academic to nursing skills; addressing fear and stigma, and inspiring passion in mental health nursing. Findings suggest academic input from people with lived experience of recovery from mental illness can influence the development of mental health nursing skills and enhance the popularity of mental health nursing as a career.

Expert by Experience Involvement in Mental Health Nursing Education: Nursing Students' Perspectives on Potential Improvements.

Expert by experience involvement in mental health education for health professional programmes has increased in recent decades. The related literature has articulated the benefits, and changes in attitudes have been measured in some studies. Less attention has been devoted to ways this learning approach could be improved. The aim of this paper is to present the nursing students perspectives on how Expert by Experience input into nursing curricula could be enhanced. Qualitative exploratory research was undertaken, involving focus groups with students who had completed a mental health learning module co-produced by Experts by Experience and nurse academics. Results show two main themes: getting the structure right, and changes to content and approach. Some student responses could directly influence changes to the learning module. In other instances, responses indicate the need to better prepare students of the value of lived experience knowledge in its own right, rather than adjunct to more traditional methods of education. These findings are important in encouraging reflection on how future learning modules co-produced by Experts by Experience and Mental Health Nursing academics can be refined and better articulated.

"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.

"Coming from a different place": Partnerships between consumers and health services for system change.

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.

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.

Nursing Students' Attitudes Towards People Diagnosed with Mental Illness and Mental Health Nursing: An International Project from Europe and Australia.

The stigma associated with a diagnosis of mental illness is well known yet has not reduced significantly in recent years. Health professionals, including nurses, have been found to share similar negative attitudes towards people with labelled with mental illness as the general public. The low uptake of mental health nursing as a career option reflects these stigmatised views and is generally regarded as one of the least popular areas of in which to establish a nursing career. The aim of the current project was to examine nursing students' attitudes towards the concept of mental illness and mental health nursing across four European countries (Ireland, Finland, Norway and the Netherlands), and Australia, using the Opening Minds Scale and the Mental Health Nurse Education survey. The surveys were distributed to students prior to the commencement of the mental health theory component. Attitudes towards mental health nursing were generally favourable. Differences in opinion were evident in attitudes towards mental illness as a construct; with students from Australia and Ireland tending to have more positive attitudes than students from Finland, Norway and the Netherlands. The future quality of mental health services is dependent on attracting sufficient nurses with the desire, knowledge and attitudes to work in mental health settings. Understanding attitudes towards mental illness and mental health nursing is essential to achieving this aim.

"Here if you need me": exploring peer support to enhance access to physical health care.

BACKGROUND: People diagnosed with mental illness (hereinafter "consumers") have higher rates of chronic disease and significantly shorter lives than the wider population. Peer workers have become increasingly involved in facilitating access to physical health care, yet the consumer perspective regarding peer involvement is unknown. This absent voice is needed to inform strategic planning and generate solutions to address the current inequity in health status. AIM: To articulate the views of consumers in regards to the potential use of peer workers to further the physical health of people with mental illness. METHODS: A qualitative exploratory study was conducted involving four focus groups with 31 consumer participants. Focus group responses were analysed thematically. RESULTS: Three themes pertaining to enhancing physical health care emerged: (1) the potential of peer workers in mitigating existing barriers, (2) consumer advocacy organisations expanding their agenda and (3) benefits of segregated activities as a segue to mainstream options. CONCLUSIONS: The envisaged forms of peer contribution have far greater scope and depth than is currently considered in policy, the research literature and health practice. Innovative solutions are required for this neglected population. Individual and systemic advocacy led by peer workers can enhance access to physical health care and have the potential to reduce physical health inequalities.

Social and material aspects of life and their impact on the physical health of people diagnosed with mental illness.

BACKGROUND: People diagnosed with mental illness have shorter lives and poorer physical health, compared to the general population. These health inequities are usually viewed at an individual and clinical level, yet there is little research on the views of mental health consumers on clinical factors in broader contexts. OBJECTIVE: To elicit the views of consumers of mental health services regarding their physical health and experiences of accessing physical health-care services. DESIGN: Qualitative exploratory design involving focus groups. SETTING AND PARTICIPANTS: The research was conducted in the Australian Capital Territory. Participants were consumers of mental health services. MAIN OUTCOME MEASURES: The Commission on Social Determinants of Health Framework was drawn on to lead deductive analysis of focus group interview transcripts. RESULTS: Issues impacting consumers included poverty, the neglect of public services and being treated as second-class citizens because of diagnosis of mental illness and/or experiencing a psychosocial disability. These factors were connected with significant barriers in accessing physical health care, including the quality and relevance of health provider communication, especially when the broader contexts of mental health consumer's lives are not well understood. DISCUSSION AND CONCLUSIONS: These findings suggest the Commission on Social Determinants of Health Framework could be utilized in research and policy, and may provide an effective platform for exploring better health communication with mental health consumers regarding this neglected health inequity.

Breaking through the Glass Ceiling: Consumers in Mental Health Organisations' Hierarchies.

Contemporary mental health policies call for consumers to be engaged in all levels of mental health service planning, implementation, and delivery. Critical approaches to traditional healthcare hierarchies can effectively challenge barriers to better engagement with consumers in mental health organisations. This qualitative exploratory study analyses how particular strategies for consumer leadership facilitate or hinder relationships between consumers and mental health services, and how these strategies influence hierarchical structures. Fourteen participants from a range of mental health organisations were interviewed. These interviews were analysed using thematic analytic and discursive psychological techniques. The findings highlight several benefits of having consumers within mental health organisational hierarchies, and elaborate on ways that employees within mental health services can support integration of consumers into existing hierarchies. Specific barriers to consumers in hierarchies are discussed, including a lack of clarity of structures and roles within hierarchies, and resistance to consumers reaching the highest levels of leadership within organisations. Alternative hierarchical models which privilege consumers' control over resources and power are also discussed. Mental health organisations are encouraged to integrate consumer leaders into their hierarchical structures to improve their organisational offerings, their reputation, and their service innovation.

How do consumer leaders co-create value in mental health organisations?

Objectives Contemporary mental health policies call for consumers to be involved in decision-making processes within mental health organisations. Some organisations have embraced leadership roles for consumers, but research suggests consumers remain disempowered within mental health services. Drawing on a service-dominant logic, which emphasises the co-creation of value of services, the present study provides an overview of consumer leadership within mental health organisations in the Australian Capital Territory. Methods Mental health organisations subscribing to the local peak body mailing list were invited to complete a survey about consumer leadership. Survey data were summarised using descriptive statistics and interpreted through the lens of service-dominant logic. Results Ways in which organisations may create opportunities for consumers to co-create value within their mental health services included soliciting feedback, involving consumer leaders in service design, having consumer leaders involved in hiring decisions and employing consumer leaders as staff or on boards. Strategies that organisations used to develop consumer leaders included induction, workshops and training in a variety of organisational processes and skills. Conclusions The findings of the present study extend the application of a service-dominant logic framework to consumer leadership within mental health organisations through consideration of the diverse opportunities that organisations can provide for consumer co-creation of service offerings. What is known about the topic? Policy calls for consumer involvement in all levels of mental health service planning, implementation and delivery. The extent to which service organisations have included consumer leaders varies, but research suggests that this inclusion can be tokenistic or that organisations choose to work with consumers who are less likely to challenge the status quo. Service literature has explored the way consumers can co-create value of their own health care, but is yet to explore consumers' co-creation of value at a systemic level. What does the paper add? This paper outlines ways in which mental health organisations report involving consumers in leadership positions, including having consumers on boards, having consumers on recruitment panels and providing leadership training for consumers. These initiatives are considered in terms of the potential value co-created within mental health services by consumers in leadership, suggesting that consumer leaders are a resource to mental health organisations in terms of the value brought to service offerings. What are the implications for practitioners? Research suggests that medical professionals have been resistant to increased consumer leadership within mental health services. The findings of the present study emphasise the value that can be brought to service organisations by consumer leaders, suggesting that mental health practitioners may reconsider their approach and attitudes towards consumer leadership in the sector.

'That red flag on your file': misinterpreting physical symptoms as mental illness.

AIMS AND OBJECTIVES: To ascertain the views and experiences of mental health consumers regarding the availability and quality of care and treatment received for their physical health needs. BACKGROUND: People diagnosed with mental illness have higher occurrence of physical health problems. Responsive health care services are crucial for prevention and management of physical health problems, and for reducing disparities in health between people diagnosed with mental illness and those who are not. There is limited research giving voice to consumer perspectives on their experiences with health care providers. DESIGN: Exploratory qualitative. METHODS: Focus group interviews with mental health consumers accessed via a consumer network group in a region of Australia (n = 31). All interview audio recordings were transcribed professionally. Interviews were thematically analysed. RESULTS: The main themes were: symptomising; failure to act and alertness to prejudice. The first two themes were consumer perceptions of the actions and behaviours of health professionals, and the third describes consumer responses to these behaviours and actions. Consumers described increased risks of illness and death because of undiagnosed physical illness despite their physical health advice-seeking as the reason for the health consultation. CONCLUSION: Health care providers' non-recognition of physical health problems presents a clear example of a significant and potentially life threatening health inequity. The service provider responses described by participants suggest that mental health consumers' physical health needs may not be taken seriously. RELEVANCE TO CLINICAL PRACTICE: Clinicians need to take seriously the physical health needs and concerns of people with mental illness. Nurses can play a crucial role in the prevention of diagnostic overshadowing as part of a broader direction of balancing biomedical perspectives with other approaches to health care.

What Physical Health Means to Me: Perspectives of People with Mental Illness.

There are significant inequalities in physical health and life expectancy between people with and without a mental illness. Understanding perspectives of people with mental illness on personal meanings of physical health is essential to ensuring health services are aligned with consumer understandings, needs, and values. A qualitative exploratory study was undertaken involving focus groups with 31 consumers in The Australian Capital Territory, Australia. Participants were asked: "What does physical health mean to you?" Thematic analysis was applied to interview transcripts. Five themes are discussed, representing different emphases in the meaning of physical health: (1) physical and mental are interconnected, (2) absence of disease, (3) moving the body, (4) struggling for healthy diet, and (5) functioning and participation. Physical pain was a difficulty that arose across these themes. Mental health consumers see physical health as always connected with well-being. Nurses would benefit from been informed by consumer understandings of physical health. In addition, there should be more attention to quality of life measures of people with mental illness as these are more congruent with consumer perspectives on physical health than biomedical measures.

'Meet Me Where I Am': Mental health service users' perspectives on the desirable qualities of a mental health nurse.

Nurses play a central role in the delivery of quality mental health services. Desired qualities of a mental health nurse, in particular therapeutic relationships, have been described in the literature, primarily reflecting the nursing paradigm. Service users' perspectives must be more fully understood to reflect contemporary mental health policy and to recognize their position at the centre of mental health service delivery and to directly influence and contribute their perspectives and experiences to mental health nursing education. A qualitative exploratory research project was undertaken to inform and enhance understanding of what service users see as the desired qualities of a mental health nurse. The project was co-produced by service users as experts by experience, and mental health nurse academics to ensure the service user perspective was privileged. This international project conducted in Europe and Australia included a series of focus groups with service users (n = 50). Data were analysed thematically. Being with me was a major theme identified and reflected the sub-themes: respect towards service users as persons; empathy, compassion and effective communication; understanding service users; knowledge of services; and fostering hope and believing that recovery is possible. These qualities specifically reflecting the service user perspective must be central to mental health nursing curricula to facilitate the development of holistic care and recovery-oriented practice. These findings were utilized to directly inform development of a co-produced mental health nursing learning module, to maximize genuine service user involvement, and to fully realize the benefits of service user led education for undergraduate nursing students.