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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↗
PubMed2003

Users' involvement in their care. A follow-up study.

1. User involvement in both care planning and staff development helped staff and residents at a community rehabilitation unit in terms of attitudes and care delivery. 2. Undertaking follow-up work shows progress in care management for staff and in social skills development for residents. 3. The results of this study provide clear indications of positive progress and identify a few areas where work still need to be done to improve care.

Adult↗
PubMed2002

From passive subjects to equal partners: qualitative review of user involvement in research.

BACKGROUND: The Department of Health and UK funding bodies have suggested that clinical academics work closely with mental health service users in research projects. Although there are helpful guidelines on the issues that have to be dealt with, there have been few examples of how this partnership research might be undertaken. AIMS: To illustrate the challenges in joint research projects. METHOD: We subjected the process of user involvement to ten questions which arose in the development of a joint research project. The answers are an amalgamation of the user and clinical researcher considerations and are affected by hindsight. RESULTS: The involvement of the user-researcher changed the focus of the study and its design and content. More attention was paid to the intervention itself and the way in which it was delivered. This process increased the amount of time taken to carry out and write up the project as well as incurring financial costs for user consultation payments and dissemination. CONCLUSIONS: This experience has clarified the contribution that users can make, for example by raising new research questions, by ensuring interventions are kept 'user friendly', and the selection of outcome measures.

Biomedical Research↗
PubMed2002

Drug users' involvement in the drug economy: implications for harm reduction and HIV prevention programs.

The purpose of this article is to explore individual and social characteristics associated with drug users' involvement in the drug economy among a sample of low-income heroin and cocaine users (n = 1,288) in Baltimore, Maryland. The study sample had participated in a network-oriented intervention study of human immunodeficiency virus (HIV) risk behaviors among drug users. Of the sample, 44% (n = 569) held at least one role in the drug economy, performing an average of 1.17 roles. A significantly higher percentage of those involved in the drug economy reported being daily drug users (60.6% vs. 40.2%), injecting heroin daily (36.0% vs. 21.8%), injecting speed daily (23.6% vs. 14.7%), and snorting heroin daily (18.3% vs. 13.4%). In terms of social networks, those involved in the drug economy reported a significantly larger social network (9.98 vs. 8.97), greater percentage of active drug users in their social network (47% vs. 44%), greater percentage of daily drug users in their social network (40% vs. 33%), and larger drug support networks (6.7 vs. 5.6). The study indicates the far-reaching influence of drug use on many aspects of their lives, including their involvement with the drug economy. Reducing drug users' frequency of use could have the consequence of decreasing this involvement. Being a part of the drug economy exposes drug users to many risks, but also places them in a position to influence others. Examining drug users' social networks could provide insight into the composition of their immediate social environment and could inform HIV prevention programs.

Adult↗
PubMed2002

Impact of end user involvement in implementing guidelines on routine pre-operative tests.

OBJECTIVES: To assess the impact of health professionals' involvement in the implementation of practice guidelines aimed at reducing the use of pre-operative tests in patients at low anaesthetic risk undergoing elective surgery. INTERVENTION: A 6 month (September 1997 to February 1998) strategy based upon organization of local meetings involving health professionals from six hospitals of Canton Ticino (Switzerland). DESIGN: Observational study (pre/post) of pre-operative test utilization between March 1996 and December 1998. SUBJECTS AND METHODS: A total of 17,978 patients admitted for elective surgery over the study period. The latter was modelled in six intervals, three before (baseline), one during, and two after (adoption) guidelines implementation, respectively. For each time interval the proportion of patients undergoing pre-operative tests was estimated. Multilevel logistic regression analysis was used to assess patient likelihood [expressed as the odds ratio (OR)] of undergoing a diagnostic test in each period, using the implementation interval as the reference category. MAIN OUTCOME MEASURE: Change in patient probability of undergoing pre-operative tests in the adoption interval. RESULTS: Adoption of the recommendations was associated with 81% [OR = 0.19; 95% confidence interval (CI) 0.15-0.23] reduction of patient probability of undergoing coagulation test, 73% (OR = 0.27; 95% CI 0.23-0.33) for glycaemia, 62% (OR = 0.38; 95% CI 0.33-0.44) for azotaemia, 57% (OR = 0.43; 95% CI 0.36-0.51) for chest X-ray, 49% (OR = 0.51; 95% CI 0.44-0.60) for creatinemia, and 43% (OR = 0.57; 95% CI 0.48-0.69) for ECG. Overall, these findings corresponded to a cost saving of 67,890 Swiss francs (US$42,000) for the last quarter under study. CONCLUSIONS: This study indicates that an implementation strategy based upon direct involvement of end users in the identification of possible barriers to change can be successful in promoting the use of practice guidelines.

Adolescent↗
PubMedDate not supplied

User involvement in the early stages of the development of an aircraft warning system.

There is an increasing awareness of the importance and the benefits to be attained from consulting the end-users during system and product development. Although the rationale of utilizing the expertise of end-users in the system development life cycle appears to provide an apparently straightforward, even 'ideal' approach, there are many difficulties associated with eliciting the required knowledge from experts, both general and specific to every user group. Furthermore, many developers do not know how to involve users, or if they do, they do not utilize them to best effect. In the avionics sphere, the wealth of knowledge possessed by line pilots and flight engineers represents a vital information resource for the design of future flight-deck systems. As a specific example, this paper overviews some of the considerations which arose from working with these end-users in the early stages of the development of a warning and diagnostic system for civil aircraft. The end-goal of this particular phase of the work was the generation of guidelines for the design of the interface for the software engineers to use when building the prototype, and the methodological approach taken to achieve this is reported here.

Aircraft↗
PubMed1994

Involving users in health care.

The publication of Caring for People, The NHS and Community Care Act 1990, and The Patient's Charter, placed involving users at the forefront of discussions concerning the future organisation and management of health and social care services. Ray Higgins describes the evaluation of an advocacy project and the challenges for managers it presented.

Hospital-Patient Relations↗
PubMed2003

Brief report on user involvement at St Christopher's Hospice.

As part of their Clinical Governance agenda, St Christopher's Hospice in southeast London has established a system for gaining patient and carers' views, in order to ensure these are given adequate consideration in planning and providing services. A users forum has been set up, and this article discusses some of the issues that had to be addressed in organizing the forum. Items such as who to invite, who should facilitate the meetings, venue, timetable, and boundaries all needed to be agreed. Evaluation of the usefulness of the forum is still required, with many questions still to be answered, but so far staff, patients and carers have enthusiastically embraced the forum. This report identifies some of the challenges in developing a person-centred user involvement scheme in a voluntary hospice.

Attitude of Health Personnel↗
PubMed2004

Patients or partners? Case studies of user involvement in the planning and delivery of adult mental health services in London.

User or patient involvement (UI) in the planning and delivery of health services is an aspiration of many industrialized economies, and has been promoted by United Kingdom (UK) governments for over two decades. This paper reports the findings of qualitative case studies of UI in two mental health provider Trusts in London. Semi-structured interviews were conducted with a variety of stakeholders, including Trust staff at all levels and user group members, to compare the expectations of diverse stakeholders and the extent to which these were achieved. We found that UI remained in the gift of provider managers: providers retained control over decision making, and expected users to address Trust agendas and conform to Trust management practices. Users wanted to achieve concrete changes to policies and services, but had broader aspirations to improve the status and condition of people with mental health problems. Suggestions are made about the direction of future strategies to improve UI.

Adult↗
PubMed1998

Developing user involvement in mental health services.

This paper describes the user consultation component of a corporate approach to the mental health needs assessment of a local population. The context of the paper is established by presenting the views of users and user representatives on current mental health services. This is followed by the development of participants' views of an 'ideal' mental health service within the boundaries of technical feasibility. Three focus groups were held with current service users, and one group with user representatives. The users have extensive experience of a range of mental health services. The findings suggest that user representatives tend to represent their own needs rather than those of users. It would also seem that service users are not a homogeneous group, different groups having different priorities. Overall, users' views of current services generally reflect previous studies, but the 'ideal' approach seems to broaden the discussion and identify an agenda for change. This agenda is framed within categories of service delivery, service providers, labelling, advocacy, future research, leaving services, involvement, co-ordination, information, choice and accessibility. There is no clear role specifically identified for mental health nurses by users, but many opportunities are highlighted. Exploration of the utility of co-operative inquiry between mental health nurses and service users is recommended.

Female↗
PubMed2001

User involvement in mental health branch education: client review presentations.

This paper will present the work of users, students and lecturers involved in the delivery of Mental Health pre-registration education, focusing on client assessment. Users from local mental health representative organizations, attend a series of college-based sessions to evaluate student's client review presentations, in which individual students explicitly and critically reflect upon a mental health assessment of a client in which they have participated. The user contributions are intended to raise student's awareness of client-centred perspectives, particularly in terms of the various possible interpretations that may be attributed to assessment data gathered about the client. The sessions seek to develop a learning approach, which will develop and consolidate a partnership in curriculum delivery between mental health service users and nursing education. This method of working has been evaluated by a previous study, and indicates that this method has an important influence on student's approaches to identifying clients needs and subsequent care delivery. This paper will focus on the organizational pre-requisites that are desirable, to implement this method of teaching and learning, including philosophical issues, contract arrangements, classroom activities, supervision, consideration of ethical dilemmas and reflective outcomes.

Educational Measurement↗
PubMed2004

Woundcare Research for Appropriate Products (WRAP): validation of the TELER method involving users.

Woundcare Research for Appropriate Products (WRAP) is a novel collaboration WRAP between industry and clinicians, funded by the Engineering and Physical Research Sciences Council. WRAP objectives included the development and testing of methodologies to identify patients' and clinicians' needs with respect to wound dressings for exudate management. The management of exudate was the focus because it was demonstrated to be the pivotal problem for patients and clinicians in a study of malignant wounds, and is a recurring problem in other wound types. A clinical note-making system (Treatment Evaluation by Le Roux's method--TELER) was validated as a method of collecting observational data of dressing performance in the context of total patient care, thereby involving the users of dressing products. The validation process was a form of consensus where multiple sources of data were used to define patient problems, within the TELER indicators, to measure a change or lack of change in the problems during a period of treatment and care and to draw conclusions about dressing performance and patient experiences.

Bandages↗
PubMed1996

User involvement in mental health nursing practice: rhetoric or reality?

Following the review of mental health nursing, nurses need to address the dilemma for providing empowering care in a climate of increasing control and stigma. This paper discusses the background to, and significance for nursing, of the 'user movement' in the UK. A current 'explosion' of user groups does not imply that these form a homogeneous group, nor that they share similar perspectives. Consultation and involvement mean little if unmatched with action. This may be constrained by the 'market' in which the 'true power' is held by the budget holder, and by stigmatizing policy imperatives claimed to be in the public interest. Self-advocacy may be legitimized by the desire to prevent providers 'speaking out'. These difficulties may, however, provide convenient excuses for inaction. A new professional identity may be found in forging political alliances with users, in which a reappraisal of traditional boundaries may go some way towards reducing the stigma surrounding mental health problems.

Humans↗
PubMed2004

Values and identity: the meaning of work for injection drug users involved in volunteer HIV prevention outreach.

Most HIV behavioral interventions provide participants with preventive information emphasizing how not to behave, and have neglected to provide attractive and feasible alternatives to risky behavior. Interventions that emphasize cultural strengths may have more powerful effects and may help remove the stigma of HIV, which has hampered prevention efforts among African American communities. Starting in 1997, the SHIELD (Self-Help in Eliminating Life-Threatening Diseases) intervention trained injection drug users (N=250) to conduct risk reduction outreach education among their peers. Many participants saw their outreach as "work," which gave them a sense of meaning and purpose and motivated them to make other positive changes in their lives.

Adult↗
PubMedDate not supplied

User involvement in the design and evaluation of a smart mobility aid.

This paper describes the design and evaluation of an innovative smart mobility aid for the frail visually impaired. The Personal Adaptive Mobility AID (PAM-AID) was developed to address the difficulties in personal mobility of the frail and elderly visually impaired. The paper provides an overview of the PAM-AID research at Trinity College and describes the evolutionary nature of the design process. Because there were no existing systems to guide its development, a series of prototypes was constructed and they were regularly evaluated in the field. This approach views potential users as vital contributing members of the design team and led to rapid and hopefully useful improvements in the design.

Aged↗
PubMed2002

Involving users in the design and usability evaluation of a clinical decision support system.

AIM: To design and evaluate a clinical decision support system (CDSS) to support cardiovascular risk prevention in type 2 diabetes. METHODS: A preliminary requirements specification and three prototype CDSS interface designs were developed. Seven patients and seven clinicians conducted 'usability tests' on five different task scenarios with the CDSS prototypes to test its effectiveness, efficiency and 'user-friendliness'. Structured, qualitative questions explored their preferences for the different designs and overall impressions of clinical usefulness. RESULTS: Patients and clinicians were enthusiastic about the CDSS and used it confidently after a short learning period. Some patients had difficulty interpreting clinical data, but most were keen to see the CDSS used to help them understand their diabetes, provided a clinician explained their results. Clinicians' main concern was that the CDSS would increase consultation times. Changes suggested by users were incorporated into the final interface design. CONCLUSION: We have successfully incorporated patients' and clinicians' views into the design of a CDSS, but it was an arduous process.

Cardiovascular Diseases↗