Service user's actual involvement in mental health research practices: A scoping review

Service user involvement in mental health research is on the international political agenda, for example mirrored by an emphasis on user involvement in funding of research. The idea is that service users contribute with their lived experiences of mental distress to the research process and thereby heighten the quality and relevance of the research. The purpose of this scoping review was to identify and evaluate empirical research of how mental health service users actually partake in collaborative research processes and to summarize this research in dialogue with mental health user‐researchers. The review included 32 studies. Main findings indicated that actual involvement of service user‐researchers in research processes encompassed a complex set of precarious negotiation practices, where academics and service user‐researchers were positioned and positioned themselves in alternative ways. The review accounts for how mental health service users were involved in collaborative research processes. The extracted themes concerned: (i) Expectations of research processes, (ii) Contribution to research processes, and (iii) Training and learning from research processes. The study reveals that collaborative research in mental health requires changes to traditional research practices to create and support genuine collaborative partnerships and thereby avoid tokenism and power inequalities.     

Service user involvement in pre-registration mental health nurse education classroom settings: a review of the literature

ACCESSIBLE SUMMARY: ? Service user involvement is an important part of pre-registration nursing programmes, as it can give students the opportunity to learn from users about their experiences of health and illness, but so far there have been limited studies in this area. ? This literature review provides an opportunity to explore how service user involvement in classroom settings can impact on student learning, and describes methods of best practice. ? Further research is needed to understand the influence of service user involvement on student nurses' clinical practice. ABSTRACT: Service user involvement in pre-registration nurse education is now a requirement, yet little is known about how students engage with users in the classroom, how such initiatives are being evaluated, how service users are prepared themselves to teach students, or the potential influence on clinical practice. The aim of this literature review was to bring together published articles on service user involvement in classroom settings in pre-registration mental health nurse education programmes, including their evaluations. A comprehensive review of the literature was carried out via computer search engines and the Internet, as well as a hand search of pertinent journals and references. This produced eight papers that fitted the inclusion criteria, comprising four empirical studies and four review articles, which were then reviewed using a seven-item checklist. The articles revealed a range of teaching and learning strategies had been employed, ranging from exposure to users' personal stories, to students being required to demonstrate awareness of user perspectives in case study presentations, with others involving eLearning and assessment skills initiatives. This review concludes that further longitudinal research is needed to establish the influence of user involvement in the classroom over time.     

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.     

Service user views and expectations of UK-registered mental health nurses: a systematic review of empirical research

OBJECTIVES: To review national (UK) literature in order to (i) examine service user and carer views of UK-registered mental health nurses; (ii) identify the diversity of populations from which these views have been collected; (iii) assess the methodological rigour of the current knowledge base and (iv) evaluate the extent to which service users and carers have been involved in the development and execution of this work. This paper reports only on service users' views. DESIGN: Systematic review. DATA SOURCES: Electronic and evidence-based databases, reference checking and hand searching of key academic journals, national policy and user/carer organisational websites. REVIEW METHODS: Two reviewers independently undertook study eligibility judgements and data extraction. Eligible studies were sub-classified according to service setting (inpatient/residential, community/non-residential or mixed/unspecified). Each study was assessed against key quality criteria. Data were synthesised in a narrative format. RESULTS: One hundred and thirty two studies were included in the review. The majority were small-scale academic studies biased towards white, adult service users. Few studies provided evidence of user collaboration. Service users regard mental health nursing as a multi-faceted role delivering practical and social support alongside more formal psychological therapies. Service users report inadequate information provision, poor inter-professional communication and a lack of opportunities for collaborative care. Service users perceive inpatient mental health nurses as particularly inaccessible. CONCLUSIONS: UK-registered mental health nurses should be equipped with both therapeutic clinical skills and generic skills associated with relationship building, engagement and communication. Future research should be conducted in collaboration with service users and include clear and effective mechanisms for the dissemination and implementation of research findings. In particular, the views of children and adolescents, the elderly and black and minority ethnic groups, currently under-represented in research, should be examined.     

Experiences of service user and carer participation in health care education

The agenda of involving service users and their carers more meaningfully in the development, delivery and evaluation of professional education in health is gaining in importance. The paper reports on a symposium which presented three diverse initiatives, established within a school of nursing and midwifery in the United Kingdom. These represent different approaches and attempts to engage service users and in some instances carers more fully in professional education aimed at developing mental health practitioners. Each is presented as achieving movement on a continuum of participation from service users as passive recipients to service users as collaborators and co-researchers. The paper concludes with a discussion of the lessons to be learnt which will hopefully stimulate service user involvement on a wider basis.     

Experiences of service user and carer participation in health care education

The agenda of involving service users and their carers more meaningfully in the development, delivery and evaluation of professional education in health is gaining in importance. The paper reports on a symposium³ which presented three diverse initiatives, established within a school of nursing and midwifery in the United Kingdom. These represent different approaches and attempts to engage service users and in some instances carers more fully in professional education aimed at developing mental health practitioners. Each is presented as achieving movement on a continuum of participation from service users as passive recipients to service users as collaborators and co-researchers.The paper concludes with a discussion of the lessons to be learnt which will hopefully stimulate service user involvement on a wider basis.     

‘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.     

Minding our own bodies: reviewing the literature regarding the perceptions of service users diagnosed with serious mental illness on barriers to accessing physical health care

International studies consistently demonstrate that individuals diagnosed with severe mental illness (SMI) have an increased risk of co-morbid physical health problems and premature death. During the past decade, government policy in the UK has focused on improving the physical health of those with SMI. Despite this, international research has continued to report barriers to accessing appropriate services. These have been identified as emanating from service users and professionals alike, and also from institutional bureaucracy. Most of this research has reported difficulties from the perspective of various professional groups, with little attention being paid to the service user voice. Studies from the service user perspective undertaken in the past 10 years equate to six qualitative and three quantitative studies, and it appears that poor physical health care remains a problem in the developed world. The quality of this care is compromised by practical problems and interpersonal difficulties between service users and health-care providers and between providers of mental health services and those providing physical health care. This paper presents a review of the nine international studies and discusses the implications for developing policy and practices that could lead to improved physical health-care services for people experiencing SMI.     

Developing user involvement in mental health services

This paper describes the user consultation component of a corporate approach to the mental health needs assessment of a local population. The context of the paper is established by presenting the views of users and user representatives on current mental health services. This is followed by the development of participants' views of an 'ideal' mental health service within the boundaries of technical feasibility. Three focus groups were held with current service users, and one group with user representatives. The users have extensive experience of a range of mental health services. The findings suggest that user representatives tend to represent their own needs rather than those of users. It would also seem that service users are not a homogeneous group, different groups having different priorities. Overall, users' views of current services generally reflect previous studies, but the 'ideal' approach seems to broaden the discussion and identify an agenda for change. This agenda is framed within categories of service delivery, service providers, labelling, advocacy, future research, leaving services, involvement, co-ordination, information, choice and accessibility. There is no clear role specifically identified for mental health nurses by users, but many opportunities are highlighted. Exploration of the utility of co-operative inquiry between mental health nurses and service users is recommended.     

Mental health policy and mental health service user perspectives on involvement: a discourse analysis

AIM: This paper is a report of an exploration of the concept of service user involvement in mental health nursing using a discourse analysis approach. BACKGROUND: Service user involvement has come to be expected in mental health nursing policy and practice. This concept, however, is often applied somewhat ambiguously and some writers call for a clearer understanding of what service users actually want. METHOD: A Foucauldian discourse analysis was conducted in 2005, examining literature and health policies published by the United Kingdom government and service users. The discursive perspectives of both were explored and conceptual themes were generated from the data. FINDINGS: Concepts occurring within government discourse include language relating to service users, the notion of service user involvement and power. Concepts from the service user discourse include power, change and control, theory, policy and practice, and experiential expertise. Differences in perspectives were found within these themes which distinguished government from service user discourses. Greater flexibility in ideas and perspectives was demonstrated by service users, with a seemingly greater range of theoretical underpinnings. CONCLUSION: Greater awareness is needed of the significance of language, of how subtle inferences may be drawn from the rhetorical language of policies, of how these might affect the involvement of service users, and of the implications for the role of mental health nurses. Nurses need to be aware of these tensions and conflicts in managing their practice and in creating a mental health nursing philosophy of 'involvement'. If true 'involvement' is to ensue, nurses may also need to consider the transfer of power to service users.     

Too Busy to Talk: Examining Service User Involvement in Nursing Work

Traditional ideas of mental health nursing are challenged in contemporary healthcare settings by developments focussed on more partnership and collaboration with people using mental health services. Yet service users have reported limited involvement in planning their own care. The purpose of this research was to explore accounts from multiple perspectives about service user involvement in mental health nursing processes. Qualitative research interviews and focus groups with mental health nursing students (n?=?18), qualified nurses (n?=?17) and service users (n?=?13) were conducted, audio-recorded and transcribed verbatim. Participants’ transcribed talk was thematically analysed to examine understandings about service user involvement and mental health nursing. Nursing work was often described as task-focussed, with limited collaboration with service users in areas like care planning. Service user involvement was seldom mentioned by nurses themselves, indicating it did not form an important part of mental health nursing processes. Mental health nurses appear to be complicit in care processes that do not include involvement of service users and may discourage novice practitioners from attempts at engagement.     

Talking with the experts: evaluation of an online discussion forum involving mental health service users in the education of mental health nursing students

The Chief Nursing Officer's recent review of mental health nursing called for the widespread involvement of mental health service users in the education of mental health nurses. This paper describes an innovative project that involved mental health service users in the education of pre-registration mental health nursing students through an online discussion forum that blended e-learning with enquiry-based learning (EBL). The findings of an evaluation are presented, drawing on quantitative and qualitative methods. Overall, the project was a success with students and service users engaging in online discussions on a range of issues. EBL presentations demonstrated understanding of the service user experience and students reflected on implications for clinical practice. All participants would take part again and recommend the online forum to others. Analysis of activity data revealed different levels and styles of student involvement. Limitations in communication skills appeared to limit student participation, alongside logistical difficulties, whereas the service users eagerly utilised the forum. Potential implications for healthcare education are discussed and recommendations made for developments in user-led e-learning and further research.     

Pedagogy, power and service user involvement

This paper explores mental health nurse educators' perceptions of the involvement of service users in preregistration nurse education. The idea for the study was developed from a local group of people including service users, lecturers and students committed to finding ways to develop service user involvement in education. This qualitative study uses semi-structured interviews to explore participants' perceptions in depth. Five lecturers who teach on the diploma programme based at a large teaching hospital were interviewed. The results suggest that the current situation of involving service users at the research site was ineffective. The concepts of 'role' and power relationships were used to explore the reasons for this. The development of service user involvement in education is complex and requires further research.     

Inequalities in health care provision: the relationship between contemporary policy and contemporary practice in maternity services in England

AIM: The project Addressing Inequalities in Health: new directions in midwifery education and practice (Hart et al. 2001) was commissioned by the English National Board for Nursing, Midwifery and Health Visiting (ENB). Here, we draw on those research findings to consider current midwifery policy and practice in England. BACKGROUND: Little guidance on providing equality of care exists for midwives. The Code of Conduct [United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC) 1992] makes no specific requirement for midwives to address issues of inequalities of health in their practice. Recent policy documents emphasize the need to work towards reducing inequalities and to target practice to 'disadvantaged clients' without giving guidelines on how to identify and care for target groups. METHODS: In-depth studies of midwifery education and service provision were conducted in three very different parts of England. Three months of fieldwork were undertaken at each site, comprising a series of interviews with midwifery educators, managers, students, midwives and service users. Focus groups were also held and observation of classroom sessions and midwifery practice undertaken. Findings. A lack of clear and specific strategies concerning inequalities in health was evident at managerial level. Patchy knowledge of current policy was also evident amongst practising midwives. Specific projects with disadvantaged clients usually resulted from a particular midwife's personal interest or evident local need. All midwives emphasized the importance of 'equality of care'. How this was operationalized varied, and 'individualized' or 'woman-centred' care was assumed to encompass the concept. In the few examples where care was systematically targeted in accordance with policy directives, the midwife's public health role was increased. CONCLUSION: In the absence of a co-ordinated strategic vision driven by managers, practitioners find difficulty in prioritizing care and targeting resources to disadvantaged clients in line with policy directives. Tensions between policy and practice in the care of 'disadvantaged' women clearly exist. Successful implementation of policy at practice level needs: commitment from managers; clarity of purpose in documentation; and provision of specific targets for practitioners. However, the latter should remain flexible enough for the delivery of care to be appropriate and sensitive to individual needs.     

Identifying research priorities in nursing and midwifery service delivery and organisation: a scoping study

This paper reports on a scoping study commissioned by the National Co-ordinating Centre Service Delivery and Organisation (NCCSDO) Research and Development (R&D) to identify priorities for nursing and midwifery research funding in England and Wales. The study comprised three strands (i) nationally held focus groups with service user representatives (32, plus six written submissions) (ii) semi-structured telephone interviews with 64 stakeholders (nursing, midwifery, medical, social care and allied health professionals; research commissioners; policy makers; educators; managers; researchers) and (iii) literature analysis. Five priority areas for research were identified-appropriate, timely and effective interventions; individualised services; continuity of care; staff capacity and quality; user involvement and participation-from which exemplar research questions and issues for strategic commissioning are suggested.     

What is consumerism and has it had an impact on health visiting provision? A literature review

AIMS: This paper analyses the concept of consumerism drawing on methods of concept analysis. It attempts to identify who the actual consumers of health visiting are before examining whether consumerism and the consumer's voice has had an impact on health visiting provision. BACKGROUND: Patients and clients are increasingly being referred to as consumers, but the term seems to be used simply as substitute for patient, client or service user. Consumerism is a complex concept and the extent of its usage in the context of health visiting has not been fully explored. METHOD: An integrative review of a range of literature relating to consumerism is presented. A focused analysis of consumer views of child health clinics is used to illustrate the concept of consumerism. Elements of concept analysis methods such as formulating a model case and a definition are used to illustrate the concept further. RESULTS: The review suggests that consumerism is an outdated concept and has been replaced by other less emotive terms such as partnership and participation. The apparent lack of impact of consumerism research in health visiting is argued by examining empirical evidence relating to child health clinics. CONCLUSIONS: Consumerism has had relatively little impact on improving child health clinics although high levels of consumer satisfaction with the overall service exist. More methodologically sound studies are needed to explore users' views of health visiting services and to implement findings to maintain or improve services.     

Service user involvement in the assessment of a practice competency in mental health nursing - stakeholders' views and recommendations

Competence in building therapeutic relationships is essential for student mental health nurses and therefore requires robust assessment. However, the assessment of such complex skills is problematic. Following policy directives exhorting increased service user involvement in general, there have been recent suggestions that service users could contribute to the assessment of practice. This paper outlines a research project which investigated the views of 24 stakeholders (service users, lecturers, mentors, ex-students and student nurses) about the potential involvement of service users in the assessment of student mental health nurses' competence in forming therapeutic relationships. The findings revealed that service users interviewed had a largely positive attitude towards this potential development. Nurse participants were more ambivalent. Despite citing several key advantages, nurses also expressed some important reservations about how such a proposal could be implemented in practice. Nevertheless, on balance, they were in favour in principle. Key recommendations for the implementation of this potential development included strategies to enable anonymity and freedom of choice for service users. A range of options for obtaining service user feedback were put forward, along with some ideas about how the fairness of the assessment might be protected.     

The profiles of adults who consult alternative health practitioners and/or general practitioners

OBJECTIVE: To compare the profiles of people visiting only a general practitioner (GP), those visiting only a practitioner of complementary and alternative medicine (CAM), and those visiting both (GP&CAM). DESIGN: A comparative total population health survey in central Norway (HUNT 2). SUBJECTS: A total of 54,448 persons 20 years of age and over who answered questions about their use of health services during the previous 12 months. VARIABLES: Sociodemographic characteristics, self-perceived health, subjective health complaints, and a variety of common diseases. RESULTS: Some 34,854 (64.0%) of those who answered the health service use question had visited only a GP, 837 (1.5%) only a CAM practitioner, and 4563 (8.4%) both during the last 12 months. The likelihood of being a CAM-only user as compared to a GP-only user was significantly increased (p < 0.005) if the participant was male; aged between 30 and 69; and without cardiovascular disease. The likelihood of being a GP&CAM user compared with a GP-only user was significantly increased (p < 0.005) for those who were female; aged between 30-59; had a higher education level; were non-smokers; had lower perceived global health; had a limiting chronic complaint; had experienced a health complaint during the last 12 months; had musculoskeletal disease; had a psychiatric complaint; and had hay fever. CONCLUSION: There were few CAM-only users and they differ from GP-only users by being male, aged 30-69, and without cardiovascular disease. Users of both GP&CAM were less healthy with more complaints and poorer self-reported health than GP- and CAM-only users.     

Service users and other stakeholders' evaluation of a liaison mental health service in an accident and emergency department and a general hospital setting

Liaison mental health care has been an emerging specialism of mental health nursing in the UK since the early 1990s. Studies have so far looked only briefly at service user evaluation. A qualitative study involving 47 interviews with service user and professional stakeholders was undertaken to determine what is important to stakeholders in a liaison mental health-care service. The largest group of stakeholders interviewed were service users. Analysis of the data was undertaken using the service user interviews to guide the development of themes. The majority of the issues identified were raised by both service users and professionals. The three key themes were, the practicalities of the service including waiting time, the staffing profile and receiving the service, which included issues such as the opportunity to talk and outcomes. The findings provide new information regarding what service users and other stakeholders expect from a liaison mental health service and important areas to consider when offering a satisfactory service.