Service User Involvement In Research Research Articles

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.

Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research

Accessible summaryPeople with learning disabilities who do not use speech are often left out of research.Ways of doing research which do not use words (for example, using photographs) might make it easier for them to join in.Ethics committees decide if plans for research projects are good enough.It is important for ethics committees to stop people from being hurt by research. But they also need to know about thepositivethings that can happen for people with learning disabilities who get involved in research.This article explains what happened when Martha (not her real name), a woman with learning disabilities who did not use speech, got involved in a research project at the hostel where she lived.We hope this article will help researchers and ethics committees think about the positive things that can happen when people with learning disabilities get involved in research.SummaryAlthough there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however, tighter regulation of the UK Research Governance Framework and the requirements of the Mental Capacity Act 2005 have increased the complexity of ethical approval processes. In reaching decisions about whether or not to grant approval, ethics committees are obliged to consider the potential harm to research participants and also the potential benefits. This article documents the benefits of involvement for ‘Martha’, who participated in a research project using photographic methods at the hostel where she lived. We hope the article will stimulate debate about ethical approval and the use of creative methodologies in research with people with profound and multiple learning disabilities.

Promoting a research-minded culture in welfare organizations

This article identifies the uneasy relationship between research and social work identifying differing conceptualizations on how research can influence practice. Alongside this is developed the notion of a learning organization as both a symbol and a process for encouraging and embedding research within social welfare organizations. Evidence-informed practice is championed over the exclusiveness of evidence-based practice and service user involvement in research is highlighted as a missing part of the jigsaw. The article also highlights the importance of research for social work and the relationship between research and effective practice whilst identifying a vision for a research-minded organization.

A model and measure for quality service user involvement in health research

AbstractIn the UK, researchers across the health professions are increasingly being encouraged by policymakers and research commissioners to ‘involve’ service users in research. A recent review shows there is some evidence that involving patients, carers, relatives, social or community groups directly and actively as part of the research process can improve the conduct of research studies and the impact of the findings. Yet, little is known about how involvement is played out within research studies and there is a need for more critical and consistent assessment of what constitutes quality involvement. The overall purpose of this paper is to support learning about quality service user involvement in health care research. The aim is to provide service users and researchers with a structured and consistent way to reflect and report on their experiences. A range of philosophical and social theories of power and empowerment were reviewed and synthesized to create a model of quality involvement. The analysis encompassed both service user factors (what a person feels able to do, whether they feel their potential is being fulfilled and their sense of being valued) alongside research factors (research relationships, ways of doing research, research structures). A model is presented (Quality Involvement Framework), which contributes theoretically informed perspectives about the meaning and assessment of quality service user involvement in research. The model is developed as a practical measure (a Quality Involvement Questionnaire) for researchers and service users to be more reflective about the constraints and possibilities of involvement. The tools presented here could help research teams to examine personal factors and the research contexts that influence the nature and quality of service user involvement in research. They may also help to identify reoccurring issues about quality which could inform future policy, practice and research.

Advocates, Agnostics and Adversaries: Researchers’ Perceptions of Service User Involvement in Social Policy Research

The involvement of service users in the research process is becomingly increasingly required by many funders of research and is being seen as an indicator of quality in its own right. This paper provides original data from a study of social policy researchers’ views of service user involvement in research. It shows a diversity of stances which have been categorised here as belonging to Advocates, Agnostics and Adversaries of user involvement. The views of Agnostics and Adversaries pose serious challenges that need to be addressed if service user involvement is to be more widely accepted and valued by some researchers and academics in social policy.

The Impact of Health Service Policy on Research and Development Activity in NHS Trust Research & Development Offices: A Survey of Research & Development Offices in England 2005/2006

An electronically managed survey of NHS Research and Development (R & D) managers was conducted in 2005-2006 by the NHS RD Forum Service User and Carer Working Group. The study aimed to identify the location for the responsibilities, and the levels of public, service user, and carer involvement in the annual workload of Research and Development Offices in England. The study also aimed to identify the current trends underlying the context of public and service user involvement in research and determine initial findings that could be utilised for comparison in further studies. The questions posed by the study were: • that public and service user involvement in research is an increasing part of the current context of health service research, and, • that public involvement in research is supported by resources as part of the research management and governance responsibility. The study had a response rate of 24% (n=76) from the total number of R & D offices in England (315). From the responses, it was clear that aspects of Government guidance and policy, relating to the involvement of the public, service users and carers in NHS health services planning, administration, participation in and dissemination of NHS health and social care services, were being implemented. This survey provides an indication of the levels of involvement of the public and service users in research. It pointed to an inverse relationship between the level of dedicated resources and the actual support for public involvement activity. Those research managers who supported the highest levels of activity generally had fewer dedicated resources.

Employment status, aspirations and perceptions of support amongst psychiatric service users in Pavia, Italy

To describe the employment status of people using mental health service in Pavia, Italy; to explore their employment aspirations and perceptions of support to achieve these; and to test the feasibility of working with service users as researchers. Face to face interviews carried out by two service user researchers with a consecutive sample of 200 service users attending the local psychiatric outpatient department using a translated version of a questionnaire developed for previous UK surveys. A higher proportion of survey participants (42.5%) were in paid work compared to the UK, but 62.4% of those in work were dissatisfied with their employment. Amongst unemployed participants, 65.2% were interested in gaining employment but only 29.3% were receiving support to do so. Support was mainly limited to referral on to a generic disability organisation. The service user researchers carried out the survey to a high standard and reported benefits from undertaking the work. The results indicate a need in Pavia for specialist employment support using the Individual Placement and Support approach. Further development of service user involvement in research is indicated.

User involvement, research and health inequalities: developing new directions

Placed in the context of broader discussions and developments about service user involvement in research and evaluation, this paper looks at the role that user involvement research may play in health inequalities research. It examines the pressures for and against such user involvement research, its different expressions and ideological relations, and what particular contribution it may have to offer in researching health inequalities. In considering how it may help in developing substantive understandings of these issues and the role it may play in the future, particular attention is paid to the issue of enabling the diverse involvement of service users in order not to reinforce existing exclusions and barriers in research, policy and practice.

User Controlled Research: Its Meanings and Potential

By Michael Turner and Peter Beresford , 2005. Shaping our Lives and the Centre for Citizen Participation, Brunel University1 ‘User Controlled Research: Its Meanings and Potential’ is a report of a project commissioned by INVOLVE (http://www.invo.org.uk) to find out more about the definition, nature and operation of user-controlled research. INVOLVE is a UK-based organization that promotes public involvement in National Health Service, public health and social care research. Although the report is focussed on user-controlled research in the UK, the nature of the report makes it relevant on an international level to a certain extent. Indeed the literature review and list of source material includes references from international and non-UK-based journals. User-controlled research is… well that is the point of this project. Service user approaches to research are a relatively recent phenomenon in health and social care, and there is still significant misunderstanding about what these approaches are and what they involve. Does this report address these misunderstandings and clarify the role of user-controlled research in health and social care? To a great extent, yes, but I do feel as though there is something missing. The report is divided into two documents: the final report (in excess of 100 pages) and the report summary (which can be downloaded from the INVOLVE website). Each of these is useful in different ways and helpful to different groups of people. The report summary is (obviously!) a summary of the whole project. It is quick and easy to read and gives a useful insight into the origins, definitions and principles of user-controlled research that would be helpful for those who do not know much about it and were too afraid to ask. It includes a one-page (eight bullet point) synopsis of Good Practice for User Controlled Research and a nice concise description of the barriers faced by user-controlled research. It is a good, user-friendly document (excuse the pun) that is well presented, and easily accessible over the Internet. The final report is more comprehensive and is a resource for those who are more interested in service user involvement in research, and is a very detailed source of information relating to User-controlled Research, including its origins, its relation to other types of service user research, definitions, good practice guidelines, the benefits of and barriers to user-controlled research and concerns for the future. Importantly, it clearly and helpfully discriminates between user-controlled research and research involving users. Even more importantly, the list of source material at the back of the report is one of the most valuable resources currently available for people interested in user-controlled research. The list includes helpful organizations, as well as a fantastic comprehensive list of literature, which is usefully grouped into key categories (including one category of examples of user-controlled research). What's missing? Well this study is very much focussed on the definitions and meaning that service users attach to user-controlled research. The authors readily admit that the project does not seek definitions and meanings from ‘conventional’ researchers and therefore may only represent ‘one side of the story’. But as this is about user-controlled research and not user involvement in research I do not see that not having the viewpoints of conventional researchers is a major drawback except that they may have more to say about the limitations of user-controlled research. Not addressing the limitations of user-controlled research in my opinion is a major drawback of the report. User-controlled research is important and has an important role in health and social care research. But it is not the ideal approach to all forms of research. There are types of research that require substantial infrastructure, expertise and accreditation. User involvement is possible but user control may not always be. Another limitation is that the report does not address the ambiguity between ‘service user’ researchers and ‘conventional’ researchers. When does one stop or start being the other? The report discusses the potential for service users to become ‘experts’ but ignores the fact that ‘conventional’ researchers are normal members of the public who are also service users. But as with every good project, this just shows that there is still work to do, and questions to be answered.

Systematic review of the role of service users as researchers in mental health studies

Service user involvement in mental health service development and research is becoming more common in countries like the UK, USA and Canada. This systematic review of the international scientific literature has been carried out to assess the stage of development of mental health service users involvement in research. Systematic review of any research project actively involving service users in any part of the research process. Thirty-five studies met the inclusion and exclusion criteria and were included in the systematic review. Nine studies used quantitative techniques, 24 used qualitative techniques and two studies used both quantitative and qualitative techniques. While three studies were user-led, in three other studies the users were simply consulted but did not have any active role in the research. The remaining 29 studies were based on a collaboration between service users and professional researchers. The involvement of mental health service users in the research process is feasible both in quantitative and qualitative research studies. The involvement of service users in research has a number of benefits; such research requires more accurate planning and more time than the traditional research.

Using Evaluative Research to Support Practitioners and Service Users in Undertaking Reflective Writing for Public Dissemination

Outputs of research are mainly reports, in a variety of formats for different audiences: web-based materials, conference presentations and articles. Usually, these are the researchers’ products, with different levels of input by research participants, dependant upon the participative methods adopted. Two strands of discourse in relation to research allow for inclusion of other potential outputs for research: service user involvement in research and the notion of the research-informed or aware practitioner. This article focuses upon the experience of using evaluative research projects to generate practitioner and user writing for public dissemination, drawing upon these two themes.

The impact of service user involvement in research

There are many examples of consumer involvement in NHS research but few studies have examined the impact of this on service development or the research process. This study, involving service user and carer researchers working alongside professional researchers, aimed to examine the development of one service user and carer research group in a mental health Trust. DERSIGN/METHODOLOGY/APPROACH: The research involved a review of existing literature on consumer involvement in research, a review of user involvement in research in South West Yorkshire Mental Health NHS Trust, a survey of consumers and NHS staff in the Trust, and a skills audit and training needs analysis of consumers. The study identified the range and extent of consumer involvement and the impact of this on consumers and the Trust. Service users and carers were involved in a range of projects, mainly on the level of consultation or collaboration. The benefits for consumers were principally on a personal level and included gaining knowledge and experience, improved sense of well-being, self esteem, and confidence. The benefit for the Trust was in having a service user perspective and focus. However, there is a tendency to omit service users from planning and setting priorities. The study pointed to the need to build the evidence base on consumer involvement in research, particularly in terms of how consumers can impact on setting research priorities and selecting appropriate methods. It identifies the need for more training for consumers and for NHS staff and for a more coherent strategy. This article will be of value to anyone who is at the start or in the early stages of their journey of consumer involvement. It identifies some of the practical issues faced by consumers and staff in working collaboratively, but also points to the benefits for all the stakeholders.