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PubMed2000

Mental health service user involvement in nurse education: exploring the issues.

This paper reports on findings and issues arising from a study designed to promote mental health service users' involvement in a preregistration nursing curriculum. Users' views about the knowledge, skills and attributes required by mental health nurses were explored to inform the curriculum design. Strategies that would facilitate long term, active user involvement in the design and delivery of the curriculum were also explored. Findings are presented with concurrent discussion of issues arising from the research process in relation to user involvement in education. The issue of 'conflict' explores findings relating to users' views of a 'good' mental health nurse and inherent conflicts between user and professional views are highlighted. The representativeness of the research participants is explored and debated in relation to service user involvement in nurse education. Finally, the concepts of 'involvement' and 'tokenism' are discussed and recommendations made about how active user involvement in nurse education can be achieved.

Curriculum↗
PubMed2002

Involving users in the delivery and evaluation of mental health services: systematic review.

OBJECTIVES: To identify evidence from comparative studies on the effects of involving users in the delivery and evaluation of mental health services. DATA SOURCES: English language articles published between January 1966 and October 2001 found by searching electronic databases. STUDY SELECTION: Systematic review of randomised controlled trials and other comparative studies of involving users in the delivery or evaluation of mental health services. DATA EXTRACTION: Patterns of delivery of services by employees who use or who used to use the service and professional employees and the effects on trainees, research, or clients of mental health services. RESULTS: Five randomised controlled trials and seven other comparative studies were identified. Half of the studies considered involving users in managing cases. Involving users as employees of mental health services led to clients having greater satisfaction with personal circumstances and less hospitalisation. Providers of services who had been trained by users had more positive attitudes toward users. Clients reported being less satisfied with services when interviewed by users. CONCLUSIONS: Users can be involved as employees, trainers, or researchers without detrimental effect. Involving users with severe mental disorders in the delivery and evaluation of services is feasible.

Delivery of Health Care↗
PubMed1998

User involvement and the NHS reforms.

The policy of 'user involvement' in the UK National Health Service emerged during the 1990s along with the reforms that created an internal market. Despite the official rhetoric, progress has been limited. Critics suggest that, not only was the policy flawed in its conception by the construction of service users as consumers and the conflation of consumerism with empowerment, but collaborative models of involvement have tended to legitimate rather than challenge existing provision. Some commentators have questioned the value of user involvement initiatives and proposed that alternative approaches, such as a strengthening of procedural rights or alignment with broader political campaigns, would be more appropriate. The low prominence given in the recent Government White Paper The New NHS1 to the contribution of service users, however, represents less of an ideological shift than a concentration on other, in the Government's view, more pressing priorities: namely, a concern to address the problems of public legitimacy and low staff morale by engaging in greater public participation and giving health professionals a more central role. The result has been a weakening of the users' voice by a conflation of user involvement with public participation and giving health professionals the authority to define users' needs for them. Service users risk, not only having their contribution devalued, but losing the right to an independent and distinctive voice. There is a real danger that the issues of user involvement will not be included on local agendas and the disparities between provision and need and between professionals' and users' views will increase.

Journal Article↗
PubMed2005

A pilot study of therapeutic massage for people with Parkinson's disease: the added value of user involvement.

OBJECTIVE: To carry out a pilot study, with particular attention to adequacy of outcome measures. DESIGN: Observational study and user participation. SETTING AND PARTICIPANTS: A local user group selected seven participants with a wide range of illness severity. INTERVENTION: A course of eight 1hr sessions of deep whole body (therapeutic) massage over 8 weeks. OUTCOME MEASURES: The Parkinson's Disease Questionnaire (PDQ-39), the Measure Yourself Medical Outcome Profile (MYMOP), and the Medication Change Questionnaire (MCQ). Semi-structured interviews, before and after the intervention. RESULTS: In addition to enjoying the massage, individuals showed improvement in self-confidence, well-being, walking and activities of daily living. There was good agreement between data from the outcome questionnaires, interviews and clinical notes. User involvement highlighted issues that would otherwise have been ignored. CONCLUSIONS: The study confirms the benefits of involving users in the research process and makes recommendations concerning the design of any future randomised trial.

Aged↗
PubMed2003

Divided care and the Third Way: user involvement in statutory and voluntary sector cancer services.

In health care, as in much of the public sphere, the voluntary sector is playing an increasingly large role in the funding, provision and delivery of services and nowhere is this more apparent than in cancer care. Simultaneously the growth of privatisation, marketisation and consumerism has engendered a rise in the promotion of 'user involvement' in health care. These changes in the organisation and delivery of health care, in part inspired by the 'Third Way' and the promotion of public and citizen participation, are particularly apparent in the British National Health Service. This paper presents initial findings from a three-year study of user involvement in cancer services. Using both case study and survey data, we explore the variation in the definition, aims, usefulness and mechanisms for involving users in the evaluation and development of cancer services across three Health Authorities in South West England. The findings have important implications for understanding shifts in power, autonomy and responsibility between patients, carers, clinicians and health service managers. The absence of any common definition of user involvement or its purpose underlines the limited trust between the different actors in the system and highlights the potentially negative impact of a Third Way health service.

Health Priorities↗
PubMed2006

User involvement in healthcare technology development and assessment: structured literature review.

PURPOSE: Medical device users are one of the principal medical device technology stakeholders. The involvement of users in medical device technology development and assessment is central to meet their needs. This study aims to examine this issue. DESIGN/METHODOLOGY/APPROACH: A structured review of the literature published from 1980 to 2005 in peer-reviewed journals was carried out from a social science perspective to investigate user involvement practice in the development and assessment of medical device technologies. This was followed by a qualitative thematic analysis. FINDINGS: Medical device users include clinicians, patients, carers and others. Different kinds of medical devices are developed and assessed by user involvement. The user involvement occurs at different stages of the medical device technology lifecycle and the degree of user involvement is in the order of: design > testing and trials > deployment > concept stages. The methods most commonly used for capturing users' perspectives are usability tests, interviews and questionnaire surveys. RESEARCH LIMITATIONS/IMPLICATIONS: The relevant engineering, medical and nursing literature, which might have been useful, was not reviewed. However, useful findings emerge that apply to health care generally. ORIGINALITY/VALUE: This study shows that medical device users are not homogeneous but heterogeneous in several aspects, such as needs, skills and working environments. This is an important consideration for incorporating users' perspectives in medical device technologies.

Community Participation↗
PubMed2002

Managing performance and performance management: information strategy and service user involvement.

The involvement of service users is extolled in National Service Frameworks and, in Wales, is one of seven standards set out in the National Service Framework for mental health services. National Service Frameworks have an important role in the UK government's performance management strategies. The strategies are retrospective in effect and offer insufficient help for service managers and others seeking to change and improve service performance. Draws on research conducted at intervals over the past four years in Swansea. In today's devolved UK, the details will be different in Wales from elsewhere but the focus is on how a number of organisations with differing responsibilities can work together to manage performance improvement. Demonstrates that change requires leadership to be dispersed across organisational boundaries. Accountability and responsibility must be horizontal and even downwards, not just upwards to government Service users can b e involved in their own care. Surveys that involve service users in their planning stages can gather information about the service issues that matter to them. Managing performance is different from performance management. It can ultimately enable services users to initiate and direct some of the improvements they want to see and to take part in the processes of change. The information systems must be locally useful for all involved, and must offer information about performance in time to affect improvement and change.

Consumer Behavior↗
PubMed2000

Service user involvement in care planning: the mental health nurse's perspective.

A dissonance between espoused values of consumerism within mental health care and the 'reality' of clinical practice has been firmly established in the literature, not least in terms of service user involvement in care planning. In order to begin to minimize such dissonance, it is vital that mental health nurse perceptions of service user involvement in the core activity of care planning are better understood. The main findings of this qualitative study, which uses semistructured interviews, suggest that mental health nurses value the concept of user involvement but consider it to be problematic in certain circumstances. The study reveals that nurses hold similar views about the 'meaning' of patient involvement in care planning but limited resources, individual patients characteristics and limitations in nursing care are the main inhibiting factors. Factors perceived as promoting and increasing user involvement included: provision of accurate information, 'user-friendly' documentation, mechanisms for gaining service user feedback, and high staff morale.

Health Planning↗
PubMed2003

Collaboration, user involvement and education: a systematic review of the literature and report of an educational initiative.

Collaboration is advocated widely through government policy as part of enormous change within the Health Service (Department of Health 1998, 2000b). Directives from policy regarding collaboration impact onto organizations, professions and individuals including users of the service. A literature review suggests that there would appear to be limited anecdotal, discursive or rigorous evidence available on collaboration at all levels including involving users. However, literature does demonstrate a mounting body of evidence that collaboration with users is being promoted as a way of working. This paper reviews the literature around collaboration and user involvement in the context of cancer care. Findings suggest that there is confusion of terminology around collaboration and user involvement. Benefits of and barriers to user involvement are identified and these are explored in the context of caring for the patient with cancer. An evaluation of a team-based educational initiative designed to help health-care professionals working within the cancer arena to explore ways to collaborate with users is presented. Findings suggest that education may be one way to develop collaboration between health-care professionals and service users.

Cooperative Behavior↗
PubMed2003

User involvement in the planning and delivery of mental health services: a cross-sectional survey of service users and providers.

OBJECTIVE: To identify methods for involving service users in the planning and delivery of psychiatric services and factors which may assist and impede this process. METHOD: A cross-sectional postal survey of user groups and providers of psychiatric services throughout Greater London (UK). RESULTS: Seventeen (94%) service providers and 29 (48%) user groups responded to the survey. Service providers employed a wide variety of different methods for involving users but none met national standards for user involvement (UI). Service providers stated that the main obstacle to UI was that users who took part were not representative of local patients. User groups highlighted staff resistance as a major obstacle and 80% stated that they were not satisfied with current arrangements for UI. CONCLUSION: While users and providers of mental health services were able to identify changes resulting from UI the responsiveness of staff and the representativeness of service users may be impeding this process.

Cross-Sectional Studies↗
PubMedDate not supplied

Growing recognition of the importance of service user involvement in mental health service planning and evaluation.

Service user involvement in the planning and provision of mental health services has been growing over the last two decades, especially in countries and areas where institutional service provision has been changed to a community-orientated model of care. However, the material involvement of service users in mental health research is still in its infancy. The aim of this paper is to attempt to place these developments in a conceptual context, to summarise the ethics-based and evidence-based reasons why it has to be considered as necessary, and to illustrate some of the emerging evidence which shows the advantages to be gained from it. In particular the results of recent studies are briefly reported, showing that outcomes data rated by service users in some cases are more important than those rated by staff. The reduction in patient-rated unmet needs in the social domain was the strongest predictor of an increase in subjective quality of life. The importance of including service user preferences within the content of the research questions is exemplified by the results of a recent study that showed that joint crisis plans can significantly reduce the use of compulsory admission during crises and by a review that demonstrated that the use of an explicit service user perspective produced distinctive insights into the long-term effects of Electro-Convulsive Therapy (ECT).

Attitude to Health↗
PubMed2003

Reflecting together: developing a new strategy for continuous user involvement in mental health nurse education.

This paper explores the first issues encountered when establishing a method of service user involvement in the preparation of a cohort of mental health nursing students during their branch programme. The method involved the creation of a group of service users and students whose purpose was to jointly reflect upon mental health issues. To do this students are expected to use their experience from practice placements and the service users to use their experiences as recipients of mental health services. This approach is being investigated through research utilizing an evaluative case study with features of action research incorporated into the design. The findings to date, which concern the process of negotiation, pre-study attitudinal survey and the first group process, will be presented. This will offer mental health professionals the opportunity to gain insight into one approach of actively involving service users in programmes of higher education over a sustained period of time. Reflection on practice themes will include: collaborative strategy, evaluative case study, education, mental health nursing, reflection on practice, and service-user involvement.

Education, Nursing↗
PubMed2004

Mental health service user involvement in England: lessons from history.

This historical analysis draws attention to differing assumptions, which promote or limit user involvement in nursing practice. The meaning of the term 'user involvement' is analyzed with reference to varying models. A continuum is offered to illustrate the relationship between assumptions about people with mental health problems and their involvement in care. It is argued that the range of views concerning recipients of mental health services, from being dangerous and irrational to being considered equal partners with health professionals, creates an unresolved tension that has existed through the ages. The key to resolving this tension is for all parties openly to acknowledge conflicts between their views and those of others and engage in meaningful dialogue about them. In this way the lessons from history may be learned.

England↗
PubMed1996

User involvement in the nursing curriculum: seeking users' views.

This qualitative study considers the views of users of mental health services on a pre-registration nursing curriculum. Semistructured group interviews were used to gain the (illustrative) views of twenty members of two user groups on nursing knowledge, skills and qualities. Interest in users' views has generally been belated or reluctant. In more recent literature, statements emerge about the need to develop a climate of respect, acceptance and sensitivity. While nurses have a central role in mental health care, a detailed examination from the user's perspective has been lacking. Despite the rhetoric of involvement, commentaries on nursing practice suggest little has changed. Findings suggest an eclectic knowledge base that respects individual differences and the user's experience, knowledge of local communities, and better recognition of physical illness is required. 'Knowledge of life' is seen as important. An emphasis on interpersonal skills is suggested, including flexible responses, information-giving, and sensitive handling of tense situations. This should be balanced against 'practical' nursing. Traditional teaching in relation to 'psychotic' experiences is challenged. It is suggested that caring should be emphasized as much as 'rational knowledge'. Developing responsive qualities that minimize 'distancing' may demand a reevaluation of boundaries between user and professional.

Attitude to Health↗
PubMed1996

Legislating for user involvement in the United Kingdom: mental health services and the NHS and Community Care Act 1990.

Recent legislation in the U.K., particularly the NHS and Community Care Act 1990, has encouraged the direct participation of service users in the planning and management of care services. This paper explores evidence of how the interests of service users experiencing mental distress are represented within community care services in the U.K. and the extent to which this leads to a devolution of power to those service users. The evidence is drawn from a survey of principal officers in social services departments responsible for mental health services and interviews with 135 service users. This reveals considerable confusion about the meaning and purpose of user involvement and about how service users can best be represented; little evidence, despite users' interest in it, of power-sharing; and limited commitment of resources to make further participation possible. The conclusion considers how, in the light of this evidence, Central and Local Government might further develop user involvement.

Attitude of Health Personnel↗
PubMed2006

Should service user involvement be consigned to history? A critical realist perspective.

Service user involvement in the UK healthcare agenda is now widely expected. Historically, service user groups have been increasingly successful in their demands for greater involvement. Hierarchies of involvement exist that include consultation and partnership working. Psychiatry is an archetypal arena in terms of power and control. The traditional view of interpreting the place of service users within this arena is that the service user is at the bottom of this hierarchy; involvement allows transcendence of the power hierarchy. Critical realist theory is offered as an alternative approach to understanding these complex relationships. It is argued that contemporary models of involvement perpetuate and sustain the power positions of the dominant discourse within psychiatry. It is suggested that a critical realism perspective, offers a model that does not kowtow to the dominant discourse but rather recognizes that service users now possess power, especially in terms of being able to provide services that statutory services providers now require. Is it time for service users to call the tune, and, in doing so, establish a power position outside the traditional hierarchy of power?

Cooperative Behavior↗
PubMed2006

User involvement in the provision of HIV services: some lessons learned from a user group in an HIV treatment centre in London.

In recent years attention has been focused on the greater participation of health service users in the identification of health service need, service design and delivery and service evaluation. This approach attempts to improve communication between health professionals and the health communities they serve in order to deliver more effective services. The establishment of user groups in HIV services has been one approach by which clinicians have attempted to establish ways that service users could help in the improvement of clinical services. This research article describes the process in the involvement of a user group in an east London HIV service. It describes the challenges that faced both the service users and the clinical staff and it analyses the factors that led to the discontinuation of the user group. The article discusses factors and challenges that must be addressed before meaningful user involvement in HIV services can be established.

HIV Infections↗