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PubMed2006

Service users and carers' experiences of a psychosis service.

This paper presents the findings of a survey, which examined how people with psychosis and their carers had experienced local mental health services. The research was conducted prior to the establishment of an early intervention service and other service improvements in the region. The results suggest that the mental health service is improving overall for individuals with psychosis and their carers. The experiences of recent service users and carers seem more positive than those whose first contact with the services occurred during the 1970s and 1980s. Both service users and their carers report feeling largely supported by mental health professionals and voluntary support agencies, and feel included in the treatment approach. However, a number of important issues were highlighted. These include (i) the need for public education (which may help to reduce the delay which currently occurs between people seeking support and receiving treatment); (ii) improved access to alternative treatments, such as psychosocial therapies (in conjunction with pharmacological treatment); the provision of appropriate psychiatric facilities; and (iii) the inclusion of an early intervention treatment approach. The survey provides descriptive information from one NHS trust, which shows support for larger scale research findings and government recommendations.

Adolescent↗
PubMed1996

Barriers to complaints: a survey of mental health service users.

Reports on a survey of 222 mental health service users in two health service trusts, which provides evidence to support and elaborate Wood's analysis of barriers to effective complaints procedures. Identifies key confounding factors such as: lack of awareness of the existence of procedures, the fears of service users about making a complaint, and the lack of awareness of rights and expectations of services. Notes key implications for managers including: the provision of accurate, comprehensive information to service users about complaints procedures, the need to recognize the many factors which inhibit service users from using procedures and the need to inform service users about their rights and services.

Health Care Surveys↗
PubMed2006

"User involvement is a sine qua non, almost, in medical education": learning with rather than just about health and social care service users.

Despite the General Medical Council emphasising the value of service users to medical students' education, there is scant literature about service user involvement in medical education. Although some research has outlined the effectiveness of service users as teachers, none has explored social issues surrounding how medical students learn 'with' rather than just 'about' service users. Incorporating insights from contemporary socio-cultural learning theory, this study examines the views and experiences of 47 stakeholders (comprising 19 service users, 13 medical students and 15 medical educators) concerning service user involvement in medical education. Eight audiotaped focus group discussions were convened and the audiotapes were transcribed. The transcripts and audiotapes were independently analysed by multiple researchers using Framework analysis. Seven content- and five process-orientated themes emerged from the analysis. Content-related themes included the costs and benefits of service user involvement in medical education and process-related themes included the use and function of humour and metaphor. In this paper, we focus primarily on the content-related themes. We discuss these findings in light of the existing service user involvement literature and contemporary socio-cultural learning theory and provide implications for further research and educational practice. We encourage educators to involve service users in medical education but only in a considered way.

Adult↗
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↗
PubMed1997

Use of GUM services and information and views held by first time service users in a large UK city: implications for information provision.

The aim of this study was to examine the relationship between information and views held by service users before obtaining help from a genitourinary medicine (GUM) service and the accessibility and use of the service, and to determine potential intervention measures for change. A structured questionnaire was completed by 292 first-time GUM service users in a large UK city in 1994. Overall 94 (57.7%) of 163 male service users and 59 (48.4%) of 122 female service users had some information about the service before seeking help, although this difference was not significant. Only 92 (31.5%) knew the service was open-access. The main source of information was through general practitioners (GPs), with personal contact as the second most common information source. Two hundred and fifteen (73.6%) used the service within 2 weeks of needing help and 104 (35.6%) of these felt there was delay, but reporting delay was not associated with having information about the service. The majority indicated feeling nervous and/or embarrassed about using the service. Female service users were significantly more likely to feel nervous or embarrassed than male service were (P < 0.05). Service users were significantly more likely to feel nervous when they had no information about the service than if they knew something about the service (P < 0.01). Most service users regarded the service as dealing with sexually transmitted infections (STIs), and most intended to use the service for this reason. However, whilst many service users indicated knowledge about non-STI services, including HIV counselling and testing, relatively few intended to use these services. Most service users (269, 92.1%) were in favour of increased availability information about GUM clinics mainly through written media but also through GPs. The results of this study show a clear need to project increased awareness and information about this GUM service so as to encourage use of the range of services available and promote more positive feelings about using the service. Information in written media as well as through other health professionals may be of benefit. Further work is needed to study the effect of information provision in influencing the large number of potential service users to make use of sexual health services.

Counseling↗
PubMed2005

Acceptability of compulsory powers in the community: the ethical considerations of mental health service users on Supervised Discharge and Guardianship.

OBJECTIVES: To explore mental health service users' views of existing and proposed compulsory powers. DESIGN: A qualitative study employing in-depth interviews. Participants were asked to respond to hypothetical questions regarding the application of compulsory powers under the Mental Health Act 1983 for people other than themselves. SETTING: Community setting in Southeast England. PARTICIPANTS: Mental health service users subject to Supervised Discharge/Guardianship. RESULTS: Participants considered that the use of compulsory powers was justified if there were some ultimate benefit, and if there was evidence of mental health problems, dangerousness, or a lack of insight. However, participants rejected intrusions into their autonomy and privacy. CONCLUSIONS: This paper's participants indicated that the proposed CTO may be unacceptable because it would threaten service users' autonomy. Service users' acceptance of proposed changes is conditional and they emphasised the importance of consent; there is no suggestion that consent will be required for the CTO. The findings also have implications for the exploration of mental health service users' views and how they might contribute to policy, service planning, and research.

Attitude to Health↗
PubMedDate not supplied

Reaching marginalized young people through sexual health nursing outreach clinics: evaluating service use and the views of service users.

OBJECTIVE: To assess the views of service users towards sexual health nursing outreach clinics situated in youth clubs. The clinics were established in economically deprived areas to meet the needs of young people aged 13-18 yrs who are reluctant to attend mainstream services. DESIGN: Descriptive cross-sectional study. SAMPLE AND MEASUREMENTS: 250 questionnaires collecting data on service use and service users' views of the clinics were distributed to a 25% sample of clinic users. In addition, 20 semi-structured interviews were conducted with service users. RESULTS: 166 questionnaires were returned (66% response rate). The service was equally popular with males and females who often attended to meet friends but subsequently sought sexual health advice. Interviews found that young people appreciated the non-judgmental aspect of the clinics, although some reported concerns about confidentiality when the clinics were busy. Some respondents indicated that the clinics gave them confidence to discuss sexual health matters with others, but often the clinics provided advice for young people who had no one else to talk to. CONCLUSIONS: The clinics seem popular with young people, and situating services within an area young people access to socialize appears to be an effective way to target them with sexual health advice.

Adolescent↗
PubMed2006

Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice.

OBJECTIVES: In the UK policy recommends that service users (patients, carers and the public) should be involved in all publicly funded health and social care research. However, little is known about which approaches work best in different research contexts and why. The purpose of this paper is to explain some of the theoretical limitations to current understandings of service user involvement and to provide some suggestions for theory and methods development. This paper draws upon findings from a review of the research 'evidence' and current practice on service user involvement in the design and undertaking of nursing, midwifery and health visiting research. DESIGN: A multi-method review was commissioned by the NHS Service Delivery and Organisation (SDO) Research and Development Programme. The timeframe was April 2004-March 2005. The full report (Ref: SDO/69/2003) and supplementary bibliography are available from: http://www.sdo.lshtm.ac.uk. REVIEW METHODS/DATA: Initial searches of the health and social care literature and consultations with researchers were used to develop a broad definition of the topic area. A service user reference group (26 members) worked with the project team to refine the scope of the review, to set inclusion criteria and develop a framework for the analysis. Systematic searches of the literature were undertaken online and through library stacks (345 relevant documents were identified). Ongoing and recently completed studies that had involved service users were identified through online databases (34 studies) and through a national consultation exercise (17 studies). Selected studies were followed up using telephone interviews (n=11). Members of the service user reference group worked with the research team to advise on key messages for dissemination to different audiences. RESULTS: Information was gained about contextual factors, drivers, concepts, approaches and outcomes of service user involvement in nursing, midwifery and health visiting research, as well as developments in other research fields. Synthesis of this information shows that there are different purposes and domains for user involvement, either as part of researcher-led or user-led research, or as part of a partnership approach. A number of issues were identified as being important for future research. These include: linking different reasons for service user involvement with different outcomes; understanding the relationship between research data and service user involvement, and developing conceptualisations of user involvement that are capable of accommodating complex research relationships. Suggestions for the development of practice include: consideration of diversity, communication, ethical issues, working relationships, finances, education and training. CONCLUSIONS: Because research is undertaken for different reasons and in different contexts, it is not possible to say that involving service users will, or should, always be undertaken in the same way to achieve the same benefits. At a research project level uniqueness of purpose is a defining characteristic and strength of service user involvement.

Community Health Nursing↗
PubMed2006

Patient Advice and Liaison Services: strengthening the voices of individual service users in health-care organizations.

OBJECTIVE: To explore the roles of Patient Advice and Liaison Services (PALS) in their interactions with service users. CONTEXT: Every National Health Service health-care provider in England now has a PALS, which provides service users with information and help in resolving concerns and dissatisfactions with health care. DESIGN: Longitudinal qualitative study, 2002-4. This paper draws on data from 27 semi-structured interviews. SETTING AND PARTICIPANTS: PALS personnel working in six case study PALS in London. FINDINGS: PALS personnel adopt seven roles in order to support their clients in sorting out problems with health care: information provider; listener; messenger (passing on information from service users to staff); go-between (passing information forward and back); supporter (helping service users to present their own views); mediator (when two or more parties are in dispute); resource mobilizer (when the support of senior staff or other agencies is necessary to resolve a problem). CONCLUSIONS: Though these are not new functions, PALS is a universal service which is better placed than front-line health-care staff to offer such support, and increases choice for service users looking for sources of information and advice.

Health Facilities↗
PubMed2006

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.

Attitude of Health Personnel↗
PubMed2001

What does receiving the care programme approach mean for service users?

OBJECTIVE: To explore what receiving the Care Programme Approach means for service users. DESIGN: A qualitative study based on peer group discussion, the transcript being subjected to issues analysis to generate key themes. SETTING: Ayrshire and Arran, West of Scotland. SUBJECTS: Six people with severe and enduring mental illness who were receiving the Care Programme Approach. The size of the group was restricted to allow service users time to express their views. (A representative response was not being sought.) RESULTS: Four major themes emerged from the service users: the power of user involvement, how receiving CPA can help to avert potential problems, the rights of service users, and the benefits of advocacy. These service users felt that CPA had made a real difference to their lives. CONCLUSION: As user involvement is an integral part of CPA, it is important that we develop strategies that allow their views to shape, in a genuine way, the services being put in place to meet their needs. In Ayrshire they seem to have learned that their participation mattered.

Female↗
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↗
PubMed2004

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.

Attitude of Health Personnel↗
PubMed2026

Qualitative evidence of service user experiences and perspectives on long-acting injectable buprenorphine for opioid treatment - a scoping review.

BACKGROUND: There is substantial literature on opioid treatment program (OTP) formulations and how they relate to the pharmacotherapy service user experience. As a newer formulation, less is known about service user experiences of long-acting injectable buprenorphine (LAIB). The aim of this scoping review is to map the qualitative evidence and gaps in the literature on service user experiences and perspectives of LAIB. METHODS: Our search strategy included Medline, Embase, PsycINFO, CINAHL, Scopus and Web Science, and citation chaining, from January 2016 to June 2025. Studies were included if reporting qualitative descriptions of LAIB service user experiences of treatment for opioid dependence, inclusive of qualitative, mixed methods (description of qualitative data only), case reports and English language. Articles were screened by two reviewers. A living experience first author led the analysis using inductive coding and thematic analysis, to produce a descriptive summary of synthesised findings alongside key study characteristics and quality appraisal, adhering to the Systematic reviews and Meta-Analysis for Scoping Reviews (PRISMA-ScR) checklist. RESULTS: After screening 838 titles/abstracts and reviewing 150 full texts, 40 studies met the eligibility criteria. All were conducted in high income countries, principally the US (n=12); Australia (n=10); and England and Wales (n=9). We identified five themes: Navigating LAIB treatment; Embodied and relational effects of LAIB; Impact and role of the service provider; Narratives of harm reduction and recovery; Stigma and criminalisation. LAIB was commonly experienced as increasing convenience, stability and freedom from daily supervised dosing, enabling improved work, travel, privacy and social participation. Reduced clinic/dosing contact often lessened enacted stigma and treatment burden. However, experiences were heterogenous. Some participants described injection-site discomfort, uncertainty about dose adequacy, reduced flexibility once injected, and ambivalence about LAIB effects. There was inconsistency in LAIB service user reports on service connection, isolation and psychosocial support. Treatment experiences were strongly shaped by provider practices. CONCLUSIONS: Findings underscore the need for integrated, flexible, harm-reduction oriented and person-centred LAIB treatment models that prioritise choice, autonomy and therapeutic relationships to maximise benefit for service users. However, evidence of LAIB service user experiences is concentrated in high-income countries, and the absence of perspectives from low- and middle-income country settings represents a substantial gap in the evidence base.

LAIB↗
PubMed2005

Patients, consumers and survivors: a case study of mental health service user discourses.

This paper is an exploratory study of ways of talking about mental health. Drawing upon data collected from mental health service users in the Republic of Ireland, it employs discourse analysis within a case study approach to embellish three 'types' of service user identified in the sociology literature. Rather than being seen as specific types it is proposed that patient, consumer and survivor be regarded as a discursive typology which function as discursive resources for service users. The re-conceptualisation of these types, as discourses, allows the researcher to gain thicker descriptions of the ways in which service users socially construct their own perspectives on mental illness. Through a process of discourse analysis, discourses of patients, consumers and survivors are extrapolated out from interview talk with members of mental health social movement organisations or groups. The identified discourses contain intrinsically different ways of talking about mental illness and allude to different conceptions of agency on the part of the service user. It is argued that they offer an insight into bottom-up social constructions of mental illness. It is proposed that these discourses suggest that notions of patients, consumers and survivors have entered the service users' discursive canon and that they are actively utilised by service users to socially construct their perspectives on mental health.

Adult↗
PubMed2002

A 'bittersweet pill to swallow': learning from mental health service users' responses to compulsory community care in England.

Two forms of compulsory mental healthcare and supervision in the community are provided within the Mental Health Act 1983: Supervised Discharge Orders (SDOs) and guardianship. At a time when the Government are proposing to extend powers of supervision over people with severe mental illness in the community, it is appropriate that service users' experiences of existing legislation are examined and reported. Despite a range of literature that presents mental health service users' views and experiences, it remains unclear how service users respond to compulsory community mental healthcare in England. The present paper presents the findings of a qualitative investigation into service users' perceptions and experiences of living with SDOs. In the interviews, service users communicated their understanding of why mental health professionals placed them on the order and how their lives have been affected. Individual service users are capable of seemingly contradictory responses, simultaneously accepting and resisting the orders. This paper presents a typology of the range of responses. These responses are fatalism and resignation, dependency, ownership, bargaining, cooperation, resistance, and rejection. The study provides a model with which we can begin to understand how service users respond to compulsory community care where their options are legally constrained.

Adult↗
PubMed1997

Interpreting silence, documenting experience: an anthropological approach to the study of health service users' experience with HIV/AIDS care in Lothian, Scotland.

This paper presents a critique of "health service user satisfaction studies" as a forum for users' voice and influence in health services evaluation and development. The study of service user experience is discussed from a social anthropological perspective, which explicitly theorises the relationship between the theoretical/epistemological foundation of health services evaluation and its political effects. It is argued that "experience" and its articulation are products of a social and political process in which research is implicated. "Experience" is thus not a static and absolute entity which can be measured or described out of the context in which data on experience are elicited and recorded-a context of which the researcher is a part. Validating findings on service user experience proceeds from a consideration of the way power and authority structure the situations where statements of experience are elicited and includes a critical appraisal of the researcher's role and ways in which this influenced interaction with study participants. The challenge and responsibility of the researcher is to capture the expression of experience without removing it from the flow of time and the situation and context where people have some control over its articulation. Attention to silence is suggested as a part of this strategy. An action research project concerned with coordination of services for people with HIV in Lothian, Scotland, is introduced. Material on users' experience of services is presented and discussed. In conclusion, the effects of research on the organisation and content of communication in the service settings studied are considered.

Acquired Immunodeficiency Syndrome↗