‘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.     

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.     

Improving exchange with consumers within mental health organizations: Recognizing mental ill health experience as a ‘sneaky,special degree’

Stigmatizing views towards consumers may be held even by those working within mental health organizations. Contemporary mental health policies require organizations to work collaboratively with consumers in producing and delivering services. Using social exchange theory, which emphasises mutual exchange to maximise benefits in partnership, the current study explores the perspectives of those working within organizations that have some level of consumer leadership. Interviews were conducted with 14 participants from a range of mental health organizations. Data were transcribed, and analyzed using thematic analytic and discursive psychological techniques. Findings suggest stigma is still prevalent even in organizations that have consumers in leadership positions, and consumers are often perceived as less able to work in mental health organizations than non‐consumers. Several discourses challenged such a view – showing how consumers bring value to mental health organizations through their expertise in the mental health system, and their ability to provide safety and support to other consumers. Through a social exchange theory lens, the authors call for organizations to challenge stigma and promote the value that consumers can bring to maximize mutual benefits.     

Consumer sexual relationships in a Forensic mental health hospital: Perceptions of nurses and consumers

The management of consumer‐related risk is paramount in a secure forensic mental health facility. However, the consequent risk aversion presents a major barrier to consumers forming sexual relationships in a manner that is open and accepted. Investigation of the views of nurses working in forensic mental health settings on this topic is limited, and even more so for consumers of services. This qualitative exploratory study was undertaken to elicit the views of consumers and nurses about forming sexual relationships within this long‐term and secure setting. Individual in‐depth interviews were conducted with 12 nurses and 10 consumers. The benefits of, and barriers to, sexual relationships was identified as a major theme, and these findings are the focus of this paper. Nurse responses included the subthemes ‘supportive factors’ and ‘potential dangers’, reflecting their qualified support. Consumer responses included the subthemes ‘therapeutic’, ‘feeling normal’, ‘restrictions and barriers’, and ‘lack of support and secrecy’. The importance of sexual relationships was clearly articulated, as was the difficulties in forming and maintaining them within the forensic setting. More open discussion about this commonly‐avoided issue and the education of nurses and other health professionals is required.     

Collaboration or chaos: A consumer perspective

Consumer participation in all levels of mental health service provision is now government policy throughout Australia. However, effective participation by consumers requires collaboration between mental health nurses and consumers. Effective collaboration and the partnership between those who provide and receive services requires trust and respect on both sides. Accompanying consumers on their ‘journey’ of wellness and recovery is likely to also provide mental health nurses with opportunities for personal and professional growth.     

Perceptions of crisis care in populations who self‐referred to a telephone‐based mental health triage service

Although psychiatric crises are very common in people with mental illness, little is known about consumer perceptions of mental health crisis care. Given the current emphasis on recovery‐oriented approaches, shared decision‐making, and partnering with consumers in planning and delivering care, this knowledge gap is significant. Since the late 1990s, access to Australian mental health services has been facilitated by 24/7 telephone‐based mental health triage systems, which provide initial psychiatric assessment, referral, support, and advice. A significant proportion of consumers access telephone‐based mental health triage services in a state of crisis, but to date, there has been no published studies that specifically report on consumer perceptions on the quality and effectiveness of the care provided by these services. This article reports on a study that investigated consumer perceptions of accessing telephone‐based mental health triage services. Seventy‐five mental health consumers participated in a telephone interview about their triage service use experience. An eight‐item survey designed to measure the responsiveness of mental health services was used for data collection. The findings reported here focus on the qualitative data produced in the study. Consumer participants shared a range of perspectives on telephone‐based mental health triage that provide invaluable insights into the needs, expectations, and service use experiences of consumers seeking assistance with a mental health problem. Consumer perceptions of crisis care have important implications for practice. Approaches and interventions identified as important to quality care can be used to inform educational and practice initiatives that promote person‐centred, collaborative crisis care.     

Consumers in mental health service leadership: A systematic review

Contemporary mental health policies call for greater involvement of mental health service consumers in all aspects and at all levels of service planning, delivery, and evaluation. The extent to which consumers are part of the decision‐making function of mental health organizations varies. This systematic review synthesizes empirical and review studies published in peer‐reviewed academic journals relating to consumers in leadership roles within mental health organizations. The Cochrane Library, Medline, and PsycINFO were searched for articles specifically analysing and discussing consumers’ mental health service leadership. Each article was critically appraised against the inclusion criteria, with 36 articles included in the final review. The findings of the review highlight current understandings of organizational resources and structures in consumer‐led organizations, determinants of leadership involvement, and how consumer leadership interacts with traditional mental health service provision. It appears that organizations might still be negotiating the balance between consumer leadership and traditional structures and systems. The majority of included studies represent research about consumer‐run organizations, with consumer leadership in mainstream mental health organizations being less represented in the literature. Advocates of consumer leadership should focus more on emphasizing how such leadership itself can be a valuable resource for organizations and how this can be better articulated. This review highlights the current gaps in understandings of consumer leadership in mental health, including a need for more research exploring the benefits of consumer leadership for other consumers of services.     

Understanding consumer participation in mental health: Issues of power and change

Consumer participation occurs in all Victorian public mental health services. Area mental health services employ consumer consultants to enhance consumer participation across the network. Ongoing support of management is essential to the success of consumer participation. This project aimed to explore understandings of consumer participation from a manager's perspective. Semistructured interviews were conducted with seven participants in this qualitative, interpretive study. The thematic analysis revealed the complexities around defining consumer participation and demonstrated the difficulties and possible reasons as to why there is no real clarity between managers, service providers, and consumers as to what consumer participation should look like. Power and change were the primary themes. Power and the overwhelming consensus that the medical model and those working within it hold the most power was strongly represented in this study. Legislation and workplace settings were seen as considerable factors adding to the disempowerment of consumers within an already disempowering mental health system. Change was the other main theme that emerged, with culture and attitudes of the old 'institutionalized' thinking that still pervades some pockets of mental health services being seen as the major barriers to change. The role of the consumer consultant was a prominent subtheme, with their role in training and the education of workers seen as an essential and positive way to progress consumer participation. These findings demonstrate that managers consider there to be hope for consumers, brought about by collective action and lobbying, and through consumer participation in less-restrictive parts of the service (community settings).     

‘Things you can't learn from books’: Teaching recovery from a lived experience perspective

Mental health policy in Australia is committed to the development of recovery‐focused services and facilitating consumer participation in all aspects of mental health service delivery. Negative attitudes of mental health professionals have been identified as a major barrier to achieving these goals. Although the education of health professionals has been identified as a major strategy, there is limited evidence to suggest that consumers are actively involved in this education process. The aim of this qualitative study was to evaluate students’ views and opinions at having been taught ‘recovery in mental health nursing’ by a person with a lived experience of significant mental health challenges. In‐depth interviews were held with 12 students. Two main themes were identified: (i) ‘looking through fresh eyes’ – what it means to have a mental illness; and (ii) ‘it's all about the teaching’. The experience was perceived positively; students referred to the impact made on their attitudes and self‐awareness, and their ability to appreciate the impact of mental illness on the individual person. Being taught by a person with lived experience was considered integral to the process. This innovative approach could enhance consumer participation and recovery‐focused care.     

‘It depends what you mean by leadership’: An analysis of stakeholder perspectives on consumer leadership

Contemporary mental health policies call for increased involvement of consumers in leadership across mental health service design, delivery, and evaluation. However, consumer leadership is not currently well understood within academia or in mental health services themselves. This study investigates how consumer leadership is currently conceptualized by stakeholders at the service delivery level. To this end, semistructured interviews were conducted with 14 mental health organization members identifying as consumer leaders, colleagues supporting consumer leaders, or organization executives. Interview data were analysed using an inductive thematic analysis to develop a broad understanding of participants’ perceptions of consumer leadership. Findings indicate constructions of consumer leadership within mental health organizations can be understood in relation to four themes: consumer leadership roles, requirements, purpose, and process. Inconsistencies across participants’ perceptions of consumer leadership were identified as constituting barriers to its development, highlighting the need to better clarify the nature of consumer leadership.     

An exploratory investigation into the housing preferences of consumers of mental health services

In the present qualitative study, 10 mental health consumers living in the community were interviewed in relation to their housing situations. Three themes emerged from the interview data: ‘The place’, ‘Other consumers’ and ‘A normal life’. Consumers rejected congregated housing because it enables the larger community to more easily identify them as former psychiatric patients. The views of participants consistently indicate a desire to live a normal life. Results of this study highlight the need for greater consumer participation with mental health nurses and policy makers, in relation to the development of housing services.     

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.     

Exploring the meaning of recovery‐oriented care: An action‐research study

The present study describes participants' perspectives of the meaning of recovery‐oriented care in developing services for people with psychosocial disability associated with mental illness. Participants were involved in a 12‐month cooperative inquiry action‐research group from August 2012 to July 2013, with six consumers, four clinicians, and a carer. A major finding was the importance of the facilitation of dialogue that acknowledged the asymmetrical power differences between participants. Thematically‐analysed data identified an overarching global theme: ‘I want services to hear me’. The theme reflected a shared view that participation is important in service development. Actions included mapping the integration of consumer participation within a mental health service and developing workshops to support change. Addressing the asymmetrical power relationship inherent in traditional mental health design is important. Using participatory processes, structural discrimination is revealed, and tensions associated with clinical mental health services and psychiatric practice can be discussed. A partnership approach to service development enables the social determinants of health to be addressed more effectively, as well as supporting individual recovery. These approaches create the potential for genuine transformational change. Approaches that support coproduction and codesign have the potential to enable solutions.     

Changing attitudes: the role of a consumer academic in the education of postgraduate psychiatric nursing students

Consumer participation in health care is increasingly becoming an expectation within mental health services. Consumer involvement in the education of mental health professionals, including nurses is considered crucial to achieving this aim. This article describes the impact of a mental health consumer academic on the attitudes of postgraduate psychiatric nursing students towards consumer participation. A questionnaire was administered to students before (n = 25) and following (n = 19) exposure to the teaching of the consumer academic. Comparison of results suggests that support for consumer participation increases after exposure to the consumer academic reinforcing the value of mental health consumers in psychiatric nursing education.     

Attitudes of postgraduate nursing students towards consumer participation in mental health services and the role of the consumer academic

Consumer participation in health care is increasingly becoming an expectation of health services. While important progress has been made in the mental health area, the attitudes of mental health professionals towards consumers poses a severe limitation. Greater consumer involvement in the education of mental health professionals has been presented as a strategy to encourage the development of a greater acceptance of consumer involvement by health professionals. A consumer academic position has been introduced into the Centre for Psychiatric Nursing Research and Practice. An important aspect of this role concerns the education of postgraduate psychiatric/mental health nursing students, in order to provide a consumer perspective and encourage greater consumer participation. In order to determine the impact of this project a questionnaire was developed by the authors to measure attitudes to consumer participation and the role of the consumer academic. This paper presents the first stage of this study. The questionnaire was administered to students (n = 25) on the first day of the course. The findings suggest that most students favour a high level of consumer participation but that this is limited to specific areas of treatment planning and delivery. Furthermore, the students' demonstrate some level of ambivalence regarding the value and necessity of the consumer academic role.     

Different voices: reviewing and revising the politics of working with consumers in mental health

ABSTRACT:  Working with consumers is now a common expectation in contemporary mental health services. Yet health professionals may not entirely understand the difference between patient and consumer roles. Alternatively, they may feel they do not have the skills or resources to deal with people in roles other than patient or carer. Nor may they be able to separate out their personal experiences with particular consumers from the ideals and goals for effective consumer partnerships. This paper reviews a concept known as the politics of difference as well as the rise of the consumer movement in order to explore areas of difference between consumers and providers, to reexamine how power and marginalization practices occur. It reminds professionals that generalizing from one failed experience relating with a consumer is just as invalid as idealizing the current policy of consumer inclusion. Inviting, allowing, amplifying and improving the effectiveness of the consumer voice in mental health services today requires active commitment, educative processes and novel strategies to move beyond superficial relationships so that consumers and professionals work together to make enduring change.     

'Consumer consultant': expanding the role of consumers in modern mental health services

We aim to increase understanding about issues affecting 'consumer consultants' at an Area Mental Health Service level in the hope that consumers and mental health staff are informed of the challenges and changes associated with that role. Anecdotal feedback indicates that consumer consultants are working harder than ever and that their role is more diverse and challenging than before. Increased organizational demands and responsibilities are testing traditional roles and approaches. There is opportunity for greater sharing of expertise and skills among health professional staff and consumer consultants to enhance current work practices, increase workplace satisfaction, and achieve positive patient outcomes.     

The role of a mental health consumer in the education of postgraduate psychiatric nursing students: the students' evaluation

Recent Australian Government policy reflects the integral nature of active consumer participation to the planning and delivery of mental health services. The effectiveness of consumer participation in improving mental health services has received some attention in the literature. Commonwealth Government funding enabled the development of a partnership between the Centre for Psychiatric Nursing Research and Practice and the Melbourne Consumer Consultants' Group. The successful application enabled the employment of a mental health consumer as an academic staff member of the Centre for Psychiatric Nursing Research and Practice. One important aspect of this role involved the mental health consumer teaching a consumer perspective to postgraduate psychiatric nursing students. The primary aim was to increase the students' awareness of and sensitivity to greater consumer participation within the mental health arena. This paper presents the results of an evaluation of the consumer academic role in teaching within the Postgraduate Diploma in Advanced Clinical Nursing (Psychiatric Nursing). An evaluation form was distributed to students (n = 21) on completion of the semester. The findings suggest the experience was considered beneficial to students and was impacting significantly on their current practice. This project supports the value of consumer participation in the education of mental health professionals.