Health Service User Involvement Research Articles

The Impact of Service User Involvement in Health and Social Care Education: A Scoping Review

The involvement of service users in social work education is longstanding, and there exists a rich body of research which explores the perceptions, attitudes and experiences of service users, academics and students in relation to this involvement. However, existing reviews of the literature conclude that few studies examine the impact of service user involvement in education on subsequent social work practice. This scoping review takes a broader approach, by mapping research which evaluates the impact on practice of service user involvement in education across domains of health and social care. Utilising the PRISMA guidance on scoping reviews, we conducted a systematic search of articles published between 2003 and 2021. The search generated six qualitative and three mixed methods studies for inclusion, which were analysed using narrative synthesis. All studies supported the claim that involvement of service users in professional education can make a constructive contribution to practice. The review highlights four themes from the studies: the application of transformative learning; impact on outcomes; influence on organisational practice; and challenges to integrating learning into practice. These themes provide a foundation for identifying potential future directions for research and pedagogical practice on service user involvement within social work education.

Creating or taking opportunity: Strategies for implementing expert by experience positions in mental health academia.

Accessible summaryWhat is known on the subject? Experts by experience involvement in the education of health professionals demonstrate positive attitudinal change.Meaningful positions for Experts by Experience are limited and ad hoc, due to attitudinal and other barriers to innovation within the higher education sector.Experiences of allies who have supported the implementation of Expert by Experience positions have not been researched. This is important knowledge that could be utilized by potential allies. What the paper adds to existing knowledge? Academic allies to experts by experience have a crucial role to play in identifying opportunities to establish, implement and sustain expert by experience positions.Allies who have successfully implemented positions for experts by experience have identified influential factors including: right person, right role, collaboration and coproduction, support, and career pathways.Understanding these factors can provide an important basis for other academics to support a widespread increase in academic roles for experts by experience in mental health education. What are the implications for practice? Establishing and maintaining genuine relationships with service users require significant attitudinal change on the part of mental health professionals. Involving experts by experience in mental health education provides an innovative approach to the challenging of attitudes and the enhancement of more collegial relationships with service users as colleagues in the workplace.This paper demonstrates the importance of allyship to the establishment, implementation and sustainability of expert by experience roles, and highlights critical factors allies have utilized in support of such roles.Nurses and other mental health professional academics have the potential to become allies and support change and innovation. IntroductionExperts by experience in academia have demonstrated more positive student attitudes towards relationships with service users. Notwithstanding this supportive evidence, academic positions for EBE have not grown substantially. Enhanced understanding of positions that have been implemented is important knowledge for others with similar aspirations.AimTo enrich understanding of the role of allies in identifying and pursuing opportunities to support academic positions for experts by experience.MethodsQualitative exploratory approach, involving In‐depth interviews with allies with expertise in supporting academic positions for experts by experience.ResultsParticipants were enthusiastic about creating or taking opportunities to secure expert by experience involvement within their programs. Factors facilitating success included right person, right role, collaboration and coproduction, support and career pathways.ConclusionsSignificant barriers have prevented proliferation of academic roles for experts by experience. Despite barriers, allies have been successful in supporting the implementation and sustaining of positions, and gained considerable expertise, which may be invaluable to academics with similar aspirations.Implications for practiceRealization of policy goals regarding service user involvement in mental health services requires health professionals with the will to embrace partnerships. By creating and taking opportunities, allies have developed expertise to facilitate implementation of positions more widely.

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

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

Children’s Involvement in Research—A Review and Comparison with Service User Involvement in Health and Social Care

Changing conceptions of children and childhood have in the last three decades led to the increasing participation of children in social research and their involvement in active research roles. However, the benefits and challenges of this process are rarely discussed in relation to the wider literature on adult involvement, thus missing an opportunity to learn from potential commonalities or differences. In this paper, I argue for an explicit comparison between children’s involvement in research and (adult) service user involvement in health and social care research. The paper presents findings from a review of children’s involvement in research, first separately, and second, in comparison with themes from the literature on service user involvement. As the paper will illustrate, many of the themes manifest themselves in similar ways in the two areas of practice, leaving scope for the development of cross-disciplinary practice, reflection and conceptual development. Particular suggestions deriving from the paper are (a) a strengthening of organisational frameworks within Higher Education institutions to facilitate the involvement of diverse groups of children in research, (b) the development of a more systematic mechanism for reporting the involvement of children and young people in research and (c) cross-disciplinary and theoretical exploration of key concepts such as power and empowerment within the involvement context.

Setting up recovery clinics and promoting service user involvement.

Service user involvement in mental health has gained considerable momentum. Evidence from the literature suggests that it remains largely theoretical rather than being put into practice. The current nature of acute inpatient mental health units creates various challenges for nurses to put this concept into practice. Recovery clinics were introduced to bridge this gap and to promote service user involvement practice within the current care delivery model at Kent and Medway NHS and Social Care Partnership Trust. It has shaped new ways of working for nurses with a person-centred approach as its philosophy. Service users and nurses were involved in implementing a needs-led and bottom-up initiative using Kotter's change model. Initial results suggest that it has been successful in meeting its objectives evidenced through increased meaningful interactions and involvement in care by service users and carers. The clinics have gained wide recognition and have highlighted a need for further research into care delivery models to promote service user involvement in these units.

Being a service user and a social work academic: balancing expert identities

I am a service user and academic working in a university social work department. My hybrid identity allows me to draw on different types of knowledge in all aspects of my work, including: academic, practice and experiential wisdom. Service user involvement is mandated across social work education but the scope and breadth of different kinds of participation is developed in diverse ways across university contexts. This article affirms the value of service user involvement in health and social care education, exploring its positive impact on students. When lecturers share personal experience of using services alongside practice and academic wisdom in the course of teaching, sometimes the value of experiential knowledge is doubted and its influence dismissed. I examine the importance of experiential wisdom in social work education, specifically when it is embedded in an academic role in a university social work department, and consider how it can be respected and valued. The parallel experiences of involving peer support workers in mental health services, who use their knowledge of recovery to mentor other service users, are then briefly examined, together with reflection of the concerns across mental health with professionals sharing their experiential wisdom with the people that they support.

Service user involvement in Swedish mental health and social care: an analysis of ideological dilemmas and subject positions in a collaboration context

Service user involvement is steadily on the rise, bringing questions of tokenism and power imbalance. This article studies service user organisation representatives (URs) and human service organisation representatives (HSORs) in mental health and social care strategic collaboration councils through qualitative interviews and participant observations. Talk on service user involvement through UR is studied through the discourse analytical concepts of ideological dilemmas and subject positions. The participants' constructions, actions, and rhetoric therein are considered. Findings show participants' oscillation between standpoints within two main themes: the ideal vs. the inadequate UR and balancing power positions. The first theme discusses the missing perspective brought by UR narrations in terms of expected conduct and awareness of organisational conditions. This also concerns service users' positions as being simultaneously dependent and independent. The second theme concerns the implicit UR influence and the explicit HSOR influence. User involvement through URs is construed as a needed narration told by citizens with rights and responsibilities, while conditioned, as the UR is a layperson with mental health problems. The actions accompanying such constructions cause HSORs to balance between paternalism and professionalism and URs between adaptation and using their voice. In this, the URs have a stronger influence than acknowledged.

The two faces of user involvement: Everyday life and local context

In most developed countries, healthcare systems are increasingly faced with political demands to involve users in the planning and development of their services. This article reports findings from an ethnographic fieldwork that investigated an inter-organizational project involving user representation. The project was set up to develop an educational programme for people with rheumatoid arthritis (RA). By investigating user representatives’ experiences, our aim was to bring to light more general determinants and conditions of user involvement in health services. Drawing on an analytical framework within everyday life sociology, the analysis explored the dual concept of “conditions and conditionality”, metaphorically described in this article as “the two faces of user involvement”. From one perspective, everyday life experiences – living with RA, encounters with the health system and professional identities and work life – conditioned user representatives’ participation in the project. From another perspective, the local institutional context and interactions within the project framework conditioned the way in which users are involved. The ways in which these conditions changed over time are described, in relation to the specific spatial, temporal and social developments in both the everyday lives of the user representatives and in the local project.

Patient involvement in research.

Service user involvement in health and social care research is increasingly being encouraged to ensure that policies derived from such research are relevant.

Evaluating the impact of service user involvement on research: a prospective case study

As service user involvement in health and social care research has become more firmly embedded in health policies, both in the UK and internationally, there is increasing interest in evaluating its potential benefits and outcomes. Impact studies have highlighted a range of different types of service user involvement, using diverse research methods, within various research topics and involving different stakeholders. Potential benefits to research, researchers and the service users actively involved in research have been identified, along with the possibility of some negative consequences. Many impact studies have been criticized for being based on informal retrospective accounts of researchers and service users working together. Few have been underpinned by conceptual models, and there is a paucity of detailed accounts of the process of involvement that would enable replication. This paper reports an account of a prospective, qualitative exploration of service user involvement within a study, where the aims of the evaluation were agreed beforehand. Reflective discussions about the process and progress of service user involvement at different stages of the study were recorded, transcribed and analysed. The qualitative analysis identified perceived benefits to research, researchers and service user researchers that endorsed previous findings. The analysis also highlighted subjective and interpersonal aspects of service user involvement that have seldom been reported. This evaluation demonstrates the benefits of allowing time for structured reflection and adds to the understanding of the process and meaning of service user involvement in research.

‘The view from inside’: understanding service user involvement in health and social care education

Service users are increasingly involved in health and social care education, whilst the government is committed to increasing access to employment for people with mental health needs. The benefits of involving service users in social work education have been identified, including increasing skills, confidence, and building capacity; yet there is little research that reflects on the personal costs of involvement. An understanding of the social model of disability underpinned by the recovery approach enables us to conceptualise more equal involvement of experts by experience in health and social care education. This enables us to respect their inclusion by noting that it is our non‐disabled environment which disables and excludes people from the work place, whilst an understanding of recovery requires us to accept that people with mental distress may have to manage the limitations of their distress in the work place rather than live a life completely free of symptoms.

Lone voices have an emotional content: focussing on mental health service user and carer involvement

The purpose of this paper is to describe learning gained from involving service users and carers as researchers in an action research study. The researchers aimed to introduce self-directed support in mental health services--part of the government's personalisation agenda, which requires a move from current social care commissioning, where a person is matched to available services, to one where a person self-assesses, has an agreed support plan and then with appropriate help, purchases his or her own services to lead as independent a life as possible. This development is allied closely with the mental health service recovery approach. Three service users and two carers were recruited to work alongside the lead researcher. Service users were fully involved in the steering group - part of participatory action research project. Data were collected from: debriefing meetings with co-researchers between April and December 2007; a group interview held by the lead researcher; and participants' journal comments and self-reflections. The main areas in which service users and carers found involvement difficult were: overcoming professional language barriers; emotional impact; and power imbalances between themselves and professionals. Findings suggest that considerable improvement is required by mental health professionals and managers if service users and carers are successfully involved in projects. This is a small study within a larger action research project. Findings are not generalisable owing to the small sample; however, findings are supported by the service-user involvement literature. Few studies explore participation effects on service users and carers from their perspective. This research provides insights into what needs to be addressed to improve service user and carer involvement to improve mental health services.

“Service user involvement in practice”: The evaluation of an intervention program for service providers and inpatients in Norwegian Community Mental Health Centers

Background: Modern mental health strategies emphasize the necessity of user participation, but only a few studies examine how user involvement can be promoted effectively. Aim: To study the possible effect of an intervention program designed to (1) increase attention to user involvement and (2) increase user involvement at the inpatient departmental level. Methods: The study has a quasi‐experimental design, involving inpatient departments in five Norwegian Community Mental Health Centers (CMHCs). Two CMHCs received the intervention, and were compared with three CMHCs that did not. The impact of the intervention was assessed with the Service User Involvement in Mental Health Scale (SUIM), a selection of items from the Consumer Participation Questionnaire (CPQ) and the Psychiatric Inpatient Experience Questionnaire (PIPEQ). One hundred and twenty‐three service providers, 51 in the intervention group and 72 in the comparison group, and 47 inpatients took part in the study. Results: Providers in the intervention group reported higher mean scores at follow‐up for the variables of organizational user involvement, patient collaboration, and carer involvement than the comparison group. The intervention program was not associated with inpatients reporting more satisfaction with care. Conclusion: An intervention program can be useful in increasing attention to service user involvement in inpatient mental health services.

Involvement in Mental Health and Substance Abuse Work: Conceptions of Service Users

Service user involvement (SUI) is a principal and a guideline in social and health care and also in mental health and substance abuse work. In practice, however, there are indicators of SUI remaining rhetoric rather than reality. The purpose of this study was to analyse and describe service users' conceptions of SUI in mental health and substance abuse work. The following study question was addressed: what are service users' conceptions of service user involvement in mental health and substance abuse work? In total, 27 users of services participated in the study, and the data was gathered by means of interviews. A phenomenographic approach was applied in order to explore the qualitative variations in participants' conceptions of SUI. As a result of the data analysis, four main categories of description representing service users' conceptions of service user involvement were formed: service users have the best expertise, opinions are not heard, systems make the rules, and courage and readiness to participate. In mental health and substance abuse work, SUI is still insufficiently achieved and there are obstacles to be taken into consideration. Nurses are in a key position to promote and encourage service user involvement.

Exploring the influence of service user involvement on health and social care services for cancer

Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. The aim of this study was to explore the influence of the cancer network partnership groups' service user involvement activities on cancer care. This was a qualitative study involving documentary analysis and in-depth case studies of a sample of partnership groups. Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. The evidence from this study suggests that cancer network partnership groups are at their most influential at 'grass roots' level - contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups' aim is to influence strategic changes, for example in cancer care commissioning or macro-level policy decision-making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital.

Perceptions of User Involvement: a User-Led Study

User involvement in health services has been a priority for government since 1990. In mental health, concern has been expressed that involved service users (activists) are not representative of 'ordinary' patients. (i) To investigate service users' perceptions of the outcomes of user involvement in two London boroughs. (ii) To determine whether the perceptions of outcomes differ between activists and non-activists. The study was user-led. The user-researchers compiled a semi-structured interview schedule which they then administered to a sample of 40 people; 20 were defined as activists and 20 as non-activists. There were also 20 participants in each borough. Activists were aware of more user groups and forms of user involvement than non-activists. However, in terms of perceptions of the outcomes of user involvement, there was little difference between the activists and non-activists. There is very little extant work on the outcomes of user involvement in mental health services. This study examined this and, contrary to reservations often expressed, there was little difference between activists and non-activists. This is a pilot study. Further work should examine perceptions of the outcomes of user involvement by other stakeholders, for example, front-line workers, managers, carers and commissioners.

In Whose Interests? Local Research Ethics Committees and Service User Research

In recent years, the United Kingdom has witnessed a growing emphasis on service user involvement in health and social care research as well as on the governance and ethical conduct of research. Despite this, these two developments often seem to have taken place in isolation from each other, and very few commentators to date have sought to explore the relationship between involvement and research ethics. Against this background, this paper reports findings from a small exploratory study of the membership of NHS research ethics committees in a case study English region. In particular, this revealed the dominance of medical practitioners, other health service professionals and academics, with most ‘lay’ members seen as non-experts and often either retired or serving as hospital chaplains. Despite this, there are some encouraging signs in the wider policy environment that may mean the link between service user involvement and research ethics becomes more established in the future.

Practitioner views on service user involvement in mental health: rhetoric and contradictions

This paper reports a small pilot study exploring ways that staff providing mental health services experience change. Group discussions focused on the drive toward service user involvement in mental health services. Discussions were held with two teams of professionals and indicate that mental health professionals experience a tension in balancing service user involvement with other dimensions of their roles and identities. Key issues include:• staff as potential, or past, service users themselves• service user involvement as a challenge to professional identities• change as being inherently difficult within ‘stuck’ systems• change as having an emotional, as well as instrumental, effect.Implications for practitioners in engaging with the involvement agenda are discussed, and highlight key issues for workforce training.

Survey of 36 trusts establishes the level of service user involvement

Reporting on a survey designed to establish user involvement in mental health services, this article seeks to stimulate new initiatives and fresh dialogue about the issues.

User involvement in mental health service development: How far can it go?

The principle of user involvement in mental health services is now advocated by central government, encouraged by service commissioners and accepted as a feature of service development by provider managers. In the wake of the 1990 NHS and Community Care Act, most localities have witnessed one or more consultation exercises which have informed mental health strategy documents produced by NHS and social service commissioners. This paper reports a piece of action research about user involvement in one locality, which attempted to take users beyond the role of passive suppliers of opinion and encouraged their role as active negotiators of change. achievements and limits of success of this exercise, the socio-political context of user involvement in British mental health service development is considered. In order to understand both the