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1.
PURPOSE: 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. FINDINGS: 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. PRACTICAL IMPLICATIONS: 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. ORIGINALITY/VALUE: 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.  相似文献   

2.
Looks at some of the issues raised by patients' involvment in the research process. Uses the example of a service users' advisory group established as part of a diabetes service evaluation in the north of England. Key conclusions were: a precise role for the group should be specified at the outset; genuine user involvement is needed; wide and accurate representation of all relevant groups in society is essential; and, researchers must approach users with open minds with a view to shared decision making rather than control.  相似文献   

3.
OBJECTIVE: To develop and evaluate service user, carer and community involvement in health and social care education. BACKGROUND: Despite the high policy profile of involvement issues, there appear to be no published accounts of schemes that have used a systematic whole-faculty approach to community engagement in health and social care higher education. FOCUS OF THIS PAPER: The set up and early development of a faculty-wide community engagement project. SETTING AND PARTICIPANTS: Staff from the faculty of health in one University, local service users and carers and community group project workers and local National Health Service (NHS) and public sector staff. DESIGN: Participatory action research including document review, field notes, questionnaires and interviews. ANALYSIS: Thematic analysis. The emerging themes were tested by seeking disconfirming data, and through verification with stake-holders. RESULTS: Prior to the study, there were examples of community engagement in the participating faculty, but they occurred in specific departments, and scored low on the 'ladder of involvement'. Some previous attempts at engagement were perceived to have failed, resulting in resistance from staff and the community. Despite this, an advisory group was successfully formed, and project framing and development evolved with all stake-holders over the subsequent year. The four themes identified in this phase were: building accessibility; being 'proper' service users/carers;moving from suspicion to trust: mutually respectful partnerships as a basis for sustainable change; and responses to challenge and emergence. CONCLUSIONS: Successful and sustainable engagement requires authenticity. Many problems and solutions arising from authentic engagement are emergent, and potentially challenging to organizations.  相似文献   

4.
Background Service user involvement is embedded in the United Kingdom’s National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. Objective To explore the personal impact of involvement on the lives of service users affected by cancer. Design We conducted eight focus groups with user groups supplemented by nine face‐to‐face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. Setting and participants Sixty‐four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. Results We identified three main themes: (i) ‘Expectations and motivations for involvement’– the desire to improve services and the need for user groups to have a clear purpose, (ii) ‘Positive aspects of involvement’– support provided by user groups and assistance to live well with cancer and (iii) ‘Challenging aspects of involvement’– insensitivities and undervaluing of involvement by staff. Conclusions This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers’ activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.  相似文献   

5.
OBJECTIVE: To involve users in the development of a research bid to examine parents' experiences of having a pre-term baby, and to examine the barriers, enablers and impacts of user involvement. DESIGN: A mainly collaborative approach to user involvement was adopted, although different types of involvement were evident at different stages of the project. Users' experiences and perspectives provided the focus for the regular meetings which underpinned the writing of the research bid. The researcher acted as a facilitator in the development of the bid, with input from users and the wider advisory group. MAIN OUTCOMES: User involvement had an important impact on the development of the research aims, methods and on ethical aspects. Through careful collaboration a research bid was produced which was rooted in users' experiences, whilst also addressing key research questions. Key enablers for involvement included good working relationships, funding for the lead researchers time. Barriers included lack of financial support for users, the time-consuming nature of involvement and the language of research. CONCLUSIONS: If user involvement remains an international policy imperative with little if any support at the vital stage of bid development, policy-makers, service user organizations, researchers, health service providers and commissioners will need to recognize the limited nature of involvement that may result and the impact this would have on the evidence base. Researchers will need to recognize the resource implications of involvement at this point, and user groups will need to decide whether to participate when there is the greatest chance of influencing research but little or no funding.  相似文献   

6.
Self‐directed disability support policies aim to encourage greater choice and control for service users in terms of the health and social care they receive. The proliferation of self‐directed disability support policies throughout the developed world has resulted in a growing amount of research exploring the outcomes for service users, and their families and carers. Our understanding of the issues faced by people with disabilities, particularly how they make health and social care decisions and the key areas that determine their engagement with service providers within a self‐directed environment is limited. A synthesis of research is timely and can provide knowledge for service users and health and social care support providers to ensure their successful participation. A systematic review guided by the PRISMA approach explored (i) the key areas determining service users’ engagement with self‐directed disability services and supports, and (ii) how service users make informed decisions about providers. In October 2014 and April 2016, three databases – MEDLINE, CINAHL and Web of Science – were searched for research and review articles. Eighteen sources met the search criteria. Findings were mapped into either: key areas determining service user engagement, or service users’ informed decision‐making. Findings concerning key areas determining engagement fell into three themes – personal responsibility for budgeting, personalised approaches, and a cultural shift in practice and delivery among service providers. Findings about decision‐making yielded two themes – supporting informed decision‐making and inhibiting informed decision‐making. Literature suggests that self‐directed models of care may provide service users with increased control over the services that they receive. Increased control for some service users and their families requires independent external decision‐making support, particularly around the domains of budgeting, planning and hiring. Future research must continue to investigate the perspectives of service users pertaining to their engagement, as their participation is central to the effectiveness of the approach.  相似文献   

7.

Background

Service users are increasingly involved in the design of clinical trials and in product and device development. Service user involvement in placebo development is crucial to a credible and acceptable placebo for clinical trials, but such involvement has not yet been reported.

Aims

To enhance the design of a future clinical trial of hand splints for thumb‐base osteoarthritis (OA), service users were involved in splint selection and design of a placebo splint. This article describes and reflects on this process.

Design

Two fora of service users were convened in 2011. Service users who had been prescribed a thumb splint for thumb‐base OA were approached about involvement by Occupational Therapy (OT) practitioners.

Content of the fora

A total of eight service users took part in the fora. Service users discussed their experience of OA and their own splints and then tried a variety of alternative splints. Through this they identified the active features of splints alongside acceptable and unacceptable design features. Service users focused on wearability and support with or without immobilization. Fora discussed whether a placebo group (‘arm’) was an acceptable feature of a future trial, and service users developed a potential design for a placebo splint.

Conclusion and discussion

This is the first project that to involve service users in placebo design. Service users are increasingly involved in product and device design and are ideally placed to identify features to make a placebo credible yet lacking key active ingredients. The future trial will include research into its acceptability.  相似文献   

8.
OBJECTIVE: To assess the benefits of involving health-care users in diabetes research. DESIGN AND PARTICIPANTS: For this qualitative case study, semi-structured interviews were conducted with researchers who had worked extensively with the group. During regular meetings of the Research User Group, members discussed their views of the group's effectiveness as part of the meeting's agenda. Interviews and discussions were transcribed, coded using N-Vivo software and analysed using constant comparative methods. RESULTS: Involvement of users in research was generally seen as contributing to effective and meaningful research. However, the group should not be considered to be representative of the patient population or participants of future trials. An important contributor to the group's success was its longstanding nature, enabling users to gain more insight into research and form constructive working relationships with researchers. The user-led nature of the group asserted itself, especially, in the language used during group meetings. A partial shift of power from researchers to users was generally acknowledged. Users' main contribution was their practical expertise in living with diabetes, but their involvement also helped researchers to remain connected to the 'real world' in which research would be applied. While the group's work fulfilled established principles of consumer involvement in research, important contributions relying on personal interaction between users and researchers were hard to evaluate by process measures alone. CONCLUSIONS: We demonstrated the feasibility, acceptability and effectiveness of this longstanding, experienced, lay-led research advisory group. Its impact on research stems from the continuing interaction between researchers and users, and the general ethos of learning from each other in an on-going process. Both process measures and qualitative interviews with stakeholders are needed to evaluate the contributions of service users to health research.  相似文献   

9.
This paper reports findings from a 5-year evaluation (1998-2003) of a postqualifying programme in community mental health in England which made a sustained attempt to develop partnerships with service users. Users were involved in the commissioning of the programme and its evaluation, as trainers and as course members. The evaluation employed mixed methods to assess: learners' reactions to user-trainers and users as course members; changes in knowledge, attitudes and skills; and changes in individual and organisational practice. Data were collected from participant observation of training, 23 individual and 18 group interviews with students and their managers (n=13), and student ratings of knowledge and skills at the beginning and end of the programme (n=49). The quality of care provided by students was rated by service users (n=120) with whom they worked, using a user-defined questionnaire. The quality of care, and mental health and quality of life outcomes were compared to those for two comparison groups (n=44) in areas where no training had taken place. In general, the students reported positive learning outcomes associated with the partnership orientation of the programme, and learning directly from and with service users. A higher proportion of programme users reported good user-centred assessment and care planning, and showed greater improvement in life skills compared to the comparators. This case study provides evidence of the value of partnership working with service users in interprofessional postqualifying education in mental health. The success is attributed to the design of the programme and the responsiveness of the programme board, which included service users. It may provide a useful model for programmes elsewhere and for other user groups. The case study itself provides a possible model for the systematic evaluation of partnerships with users in education and training.  相似文献   

10.
OBJECTIVES--To investigate perceptions of family health service authorities and medical audit advisory groups of advisory groups' involvement in clinical audit and wider quality issues; communication with the authorities; and manager satisfaction. DESIGN--National postal questionnaire survey in 1994. SETTING--All family health services authority districts in England and Wales. SUBJECTS--Chief executives or other responsible authority officers and advisory group chairpersons in each district. MAIN MEASURES--Priorities of advisory group and authority for audit; involvement of advisory group in wider quality issues; communication of information to, and contacts with, the authority and its involvement in planning the future work of the advisory group; and authorities' satisfaction. RESULTS--Both groups' views about audit were similar and broadly consistent with current policy. Advisory group involvement in wider quality issues was extensive, and the majority of both groups thought this appropriate. Much of the information about their activities collected by advisory groups was not passed on to the authority. The most frequent contact between the two groups was the advisory group's annual report, but formal personal contact was the most valued. Most authority respondents thought their views had been recognised in the advisory group's planning of future work; only a small minority were not satisfied with their advisory groups. Dissatisfied respondents received less information from their advisory groups, had less contact with them, and thought they had less input into their plans. There was some evidence that advisory groups in the "dissatisfied districts" were less involved in clinical audit and with their authorities in wider quality issues. CONCLUSIONS--Most advisory groups are developing their activities in clinical audit and have expanded their scope of work. The quality and availability of information about progress with audit is a cause for concern to both groups.  相似文献   

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