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PubMed2006

User and carer involvement in the training and education of health professionals: a review of the literature.

BACKGROUND: Health policy requires consumer involvement in services, research and education but little is known about how consumers are being involved in healthcare education, the effect on learning and practice, nor how involvement initiatives are being evaluated. OBJECTIVES: To describe methods of involving consumers in healthcare education, discuss ways in which initiatives have been evaluated, and identify areas for development in education, practice and research. DESIGN: All papers reporting specific initiatives involving consumers in health care worker training and education were included. Viewpoint articles and studies of consumers training consumers were excluded. DATA SOURCES: Cinahl, Medline, Assia, PsycINFO, British Nursing Index, Social Science Citation Index, citations from reference lists, relevant websites and personal communication with key people known to be working in this area. REVIEW METHODS: A narrative approach was taken with categorisation of data to reflect objectives of selected studies; method of involvement; process issues and evaluation. RESULTS: Thirty-eight papers were included; most provide small-scale qualitative studies of mental health service users and focus on process rather than outcome. Various methods of involvement are described and consumers consistently prioritise the need for training in interpersonal skills over 'technical' skills. There is little research into organisational strategies and no studies investigate the effect of consumer involvement on practice. Two studies indicated that students exposed to consumer involvement demonstrate more empathic understanding and better communication skills. CONCLUSIONS: There is tentative evidence that consumer involvement in training enhances workers' skills in the manner prioritised by consumers. However, if consumer involvement in training and education is to facilitate services that reflect the priorities of the people using them, it must be developed in partnership with service providers; further research is needed to explore the impact of consumer involvement and to track the development of organisational consumer involvement strategies, also systems for supporting consumers need to be established, including training for both consumers and staff.

Attitude of Health Personnel↗

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↗

PubMed2000

[Perspectives of psychiatric care in Leipzig--deinstitutionalization from the viewpoint of neurologist/psychiatrist in private practice and the work of consortium of community psychiatric services].

Two perspectives of mental health care in Leipzig are outlined. Critical aspects of deinstitutionalization are discussed from the point of view of an office-based Nervenarzt (neurologist and psychiatrist). The limitations of office-based practice in providing care for the severely mentally ill (SMI) are described, i.e. lack of a multidisciplinary community mental health team, community psychiatric nursing and social work back-up in particular. Residential service and nursing homes are often under-staffed and ill-prepared for caring for people with SMI. A second view-point describes the Verbund Gemeindenahe Psychiatrie, a community psychiatric service for the just under 500,000 population of Leipzig in seven community mental health centers each combining day hospital, out-patient clinics and multidisciplinary community psychiatric care. This service is unique in Saxony and well accepted by service users and professionals.

Community Mental Health Services↗

PubMed2006

The acceptability of an injectable, once-a-month male contraceptive in China.

PURPOSE: An acceptability study of an injectable preparation of the synthetic steroid testosterone undecanoate as a once-a-month male contraceptive method was carried out concurrently with, but independently from, a clinical safety and efficacy trial of this preparation in China, from 1997 to 1999. METHOD: Three hundred eight men, the entire group of volunteers enrolled in the clinical trial, were interviewed using a structured questionnaire. In addition, 24 sessions of focus group discussions and 54 in-depth interviews were conducted with a broad range of stakeholders, including men enrolled in the trial and their wives, potential users, service providers, principal investigators of the six participating clinical trial centers, provincial and national policy makers, and experts engaged in research and development of male methods of contraception. RESULTS: Overall, men found the regimen to be acceptable, and most reported no change or an improvement in their well-being as a result of participating in the clinical study. The frequency of the injections, monthly semen analyses and the need to use another contraceptive method during the period of sperm suppression were reported inconveniences of the trial. CONCLUSION: Further research is needed to assess the long-term safety, continuation rates, satisfaction among users and issues related to service delivery.

Antispermatogenic Agents↗

PubMed2006

Two-tier charging strategies in public hospitals: implications for intra-hospital resource allocation and equity of access to hospital services.

Two-tier charging, the practice of offering separate qualities of service at different prices, is a growing practice in public hospitals internationally. This paper models two-tier charging as a Stackelberg game in which the Ministry of Health leads by setting prices and a representative hospital follows by setting quality levels to maximise surplus in response. Whether or not two-tier charging will secure cross-subsidy from superior to basic service users depends on the own and cross-quality effects of the demand functions for the two services. Under a range of assumptions, the policy will evoke cross-subsidy from basic to superior services.

Fees and Charges↗

PubMed1999

Treatment issues for HIV+ Africans in London.

Black Africans are the second largest group of HIV/AIDS service users in London, UK. They are distinguished from other patient groups by their delay in access to services and appear to have a lower uptake of antiretroviral therapies. This study explores the treatment issues concerning black Africans which may affect their uptake of therapies. Issues raised included questions about if and when to start treatment, fears of side-effects both short and long term, awareness of the current uncertainties surrounding combination therapies and concerns about how to achieve compliance. The social circumstances of HIV positive black Africans living in London together with differences in cultural beliefs and experience of health care in the UK give rise to particular treatment concerns. These concerns include the fear of being experimented upon, lack of confidence in drugs tested only on Caucasians, distrust of the medical profession and fears of discrimination. Efforts to encourage the uptake of antiretroviral therapies by black Africans in Britain must take into account the particular experiences, fears and concerns of this patient group.

Africa↗

PubMed2006

ReGAE 2: glaucoma awareness and the primary eye-care service: some perceptions among African Caribbeans in Birmingham UK.

AIMS: Investigations into glaucoma awareness have drawn on informed, clinic-based populations. The paper reports a section of findings from a larger study that aimed to elicit the perceptions of those potentially less informed in community settings. METHODS: A qualitative investigation used face-to-face interviews and focus group discussions with 48 African Caribbean participants outside the hospital eye-service. Interview data were transcribed and coded using manual and computer-aided methods. Inferences and interpretations were corroborated by discussion with expert advisors and community members not directly involved in the study. RESULTS: Positive attitudes to health promotion existed, but 'eye health' did not appear to be integral to individuals' health schemas. The capacity for primary eye care to enhance glaucoma knowledge appeared under utilised and inconsistent across modes of service delivery and was undermined by perceived conflicts of interest. CONCLUSIONS: Enhancing reciprocal understanding between service users and ophthalmic practitioners in primary care is central to developing flexible, responsive local eye-care services. The study suggested useful foci for cultural self-reflection and self-awareness on the part of health professionals themselves, in relation to glaucoma detection. Areas for further research are identified.

Adult↗

PubMed2003

Using patient stories to inspire quality improvement within the NHS Modernization Agency collaborative programmes.

The importance of obtaining the opinions of service users has long been recognized and, traditionally, most contact has focused on measuring their satisfaction with the services they receive. However, there is little evidence that this has had much impact on improving care. The Discovery Interview Process, a technique for listening to patients and carers and using their narratives to improve care, is discussed in this article. This approach has been used in the pilot phases of the UK Coronary Heart Disease Collaborative and Critical Care Collaborative. These narratives develop understanding grounded in experience. Those delivering care can interpret the narratives using their own clinical and professional knowledge and experience to create better or new ways of meeting patients' and carers' needs. Using their own expert knowledge they can identify needs within the narratives, including those that patients and carers did not know they had. The principal techniques for gathering these narratives are outlined, and ways of using such data to inform patient-focused service improvements are discussed. Various locally sensitive methods for presenting the narratives to expert interprofessional teams are also described along with emerging experience of this feedback. We consider the Discovery Interview technique for gathering patient and carer narratives to be a potentially powerful method for informing quality improvements, discovering what really matters to patients and their carers. This pragmatic approach could prove manageable within local quality improvement projects.

England↗

PubMed1997

Utilization of mental health services by women in a male-dominated environment: the VA experience.

OBJECTIVE: The study examined whether women in the Veterans Affairs system use mental health services at a lower rate than men because the system is geared to treat a mostly male population. METHODS: Data were obtained on a national cohort of patients utilizing specialty mental health services in the VA during a two-week period in fiscal year 1991 (N = 70,979). Analyses included comparison of the proportion of women among treated veterans with the age-adjusted proportion of women among all veterans, comparison across gender of the likelihood of use of any general psychiatric services or substance abuse care in 1991, comparison of the intensity of services used (inpatient days and outpatient contacts) by service users in 1991, and comparison of the likelihood of receiving care and the intensity of mental health services received two years later. RESULTS: Overall, 3.95 percent of veterans who used VA mental health specialty services were women; 4.02 percent of all veterans were women. No significant differences between genders were found in use of general psychiatric services, either in the likelihood of any use or the intensity of services used. However, women were significantly less likely to receive substance abuse care (16.3 percent of women versus 71.2 percent of men); once receiving care, they used a similar intensity of substance abuse services. CONCLUSIONS: Being a woman does not appear to have a substantial effect on overall access to VA mental health services or use of general psychiatric services; however, women use VA substance abuse treatment services at a lower rate than men.

Adult↗

PubMed2001

Active learning in service delivery: an approach to initial clinical placements.

In their first clinical placement and using an active learning approach, students provided an extension to existing service provision. Therapist-led teams of six students carried out assessment, therapy and advice. Carefully structured preparation, supervision and feedback enabled them to discover and develop effective approaches for themselves. The learning experience and service provision were evaluated and modifications introduced over a three year period. Feedback from students and service users confirmed that the project had provided both effective learning and a valuable contribution to the local service.

Education, Professional↗

PubMed1999

Creating alliances: the views of users and carers on the education and training needs of community mental health nurses.

The Sussex Education and Training Consortium commissioned a development project to identify the education and training needs of Community Mental Health Nurses (CMHNs) working with people with severe mental illness. The concerns of various stakeholding groups were identified using a qualitative methodology, Responsive Evaluation. This paper reports the views of 52 service users and representatives and 24 carers and career support workers as expressed in semi-structured interviews and focused discussion groups. Users and carers were able to identify specific areas that require attention in the education and training of CMHNs. Users want CMHNs to have wide knowledge of mental illness, medication, therapies and services and the understanding and confidence to work in an empowering way. They also want CMHNs to systematically involve users and their carers in care planning and to make more explicit any communication with other professionals and agencies. Carers want more involvement and information and CMHNs made more aware of the role that carers play and the specific problems they face. Users and their organisations would like significant involvement in the provision of CMHN education and training at all levels. Developments to CMHN education and training are suggested with recommendations for research and evaluation.

Adult↗

PubMed1995

Heavy users of emergency services: social construction of a policy problem.

A relatively small subgroup of emergency department (ED) patients is responsible for a disproportionate amount of ED visits and costs. This subgroup, the heavy users of ED services, is identified as a medically and socially vulnerable population. Heavy users of ED services are identified as a 'problem' in the United States that opens a 'window' on the wider social issues critical to consensus on health care reform. The problem is nested within a complex of larger, interdependent problems including access to care, lack of primary/preventive services, absent or inadequate social services, and fragmented service delivery. This article uses the literature on heavy users of ED services to argue that social constructions of the problem and articulation of solutions by different key players in health care reform are based on divergent and often conflicting premises.

Emergency Service, Hospital↗

PubMed2003

Dental services and perceived oral health: are patients better off going private?

OBJECTIVE: The aim of this study is to determine associations between method of payment for dental services and perceived oral health in the UK. METHOD: A national UK study involving a random probability sample of 2718 adults. Respondents were interviewed in their homes about their method of payment for dental services (private or NHS), service use (time and reason for last dental visit), self-reported oral health status (number of teeth possessed and denture status) and the impact of their oral health on their quality of life (employing the 16-item OHQoL-UK( Copyright) measure). RESULTS: The response rate was 68% (1838/2718). Thirty one percent (575/1838) claimed they paid privately for dental services the last occasion they visited their dentist. This was associated with self-reported number of teeth possessed (P<0.01), denture status (P<0.01), WHO goal of retaining 20 teeth with and without a prosthesis (P<0.05), impact of oral health on life quality (P<0.01), and number of positive oral health influences experienced (P<0.01). However, these associations did not remain apparent having accounted for socio-demographic factors (age, gender, and social class background) and reported dental attendance pattern. CONCLUSION: Difference in perceived oral health exists between private and NHS dental service users. However, this is more likely to be attributed to socio-demographic factors and regular use of services rather than method of payment.

Adolescent↗

PubMed2000

Risk and protection: the discourse of confinement in contemporary mental health policy.

Confinement has regained respectability in the discourses of contemporary UK mental health policy. This development reflects concern about violent offences by people with mental health problems and is rooted in claims about the 'failure' of community care. Confinement is presented as a strategic response to the risks and dangers posed by particular fractions of the population of mental health service users. Using two key policy statements issued by the Department of Health and associated discussions in the health services management press, the confinement theme is explored and assessed. The paper notes its emergence as a consequence of the spatial impacts of deinstitutionalization and its specific origins in response to violent offences by people with mental health problems. The notion that the growing emphasis on confinement presages a return to the asylum is considered and rejected. Rather, the paper stresses the importance of discourses of protection, safety, risk and dangerousness in understanding the turn to confinement.

Commitment of Persons with Psychiatric Disorders↗

PubMed2001

Involving the 'consumer' in the evaluation of dental care: a philosophy in search of data.

Recent initiatives by the government of the United Kingdom have led to an increasing interest in patient and public participation in the evaluation and design of healthcare. (1,2) To date this has largely concentrated on the identification of the views of service users of both the treatment they have received, and of what could be called the structural dimensions of service provision, for example ease of access, waiting times, availability of treatment facilities, priorities in care and so on. (3,4) In this article I shall explore three broad questions: Who counts as a 'consumer' and what do we want to know from them? How do we go about ascertaining their views? How do we use information on the views of consumers in planning services and providing care?

Dental Care↗

PubMed2002

Younger people in dementia care: a review of service needs, service provision and models of good practice.

This paper reviews the literature on younger people (under 65 years of age) with dementia, in dementia care. Seventy-four relevant papers were identified by use of a search strategy derived from the methodology of systematic reviews, the majority of which originated in the UK (69, 93.2%). The need for specialist, flexible, age-appropriate, and dedicated services was a central theme in the literature. A person-centred approach was advocated within an individual or 'tailor made' model of care. However, the available evidence suggests that this model of good practice is not currently reflected in the majority of services provided in the United Kingdom. Overall, the literature argues that the needs of younger people with dementia are best served by inter-agency collaboration, early assessment, and an awareness of individual needs. Clearly, these proposals could usefully serve anybody with dementia, irrespective of age. However, aside from a few prevalence studies, and some exploratory work with small numbers of service users, little in the way of empirical work is available. The recommendations that have been made regarding dementia services for younger people are based largely on the practical experience of professionals and paid carers, rather than scientific evidence.

Adult↗

PubMed2005

Multi-agency working in services for disabled children: what impact does it have on professionals?

Whilst agencies in many sectors have been encouraged to work together to better meet the needs of service users, multi-agency working is now a central feature of government policy. In relation to children's services, the National Service Framework, the English green paper, 'Every Child Matters' (DfES, 2003) and the Children Bill (DfES 2004) give a high priority to an integrated approach to service provision. This paper focuses on multi-agency working for disabled children with complex health-care needs, a group of children who, perhaps even more than most, require the many professionals who support them and their families, to work more closely together. Drawing on the findings from a 3-year qualitative research study, this paper examines the impact of working in a multi-agency service on professionals. Interviews with 115 professionals concluded that staff were overwhelmingly positive about working as part of a multi-agency service. They reported improvements to their working lives in areas such as professional development, communication, collaboration with colleagues, and relationships with families with disabled children. However, whilst professionals felt that they were able to offer families a more efficient service, there was concern that the overall impact of multi-agency working on disabled children and their families would be limited.

Adolescent↗

PubMed1997

Necropsies in HIV medicines.

OBJECTIVE: The objective of this study was to determine the availability of necropsy services to departments dealing with HIV positive patients, and to assess their satisfaction with, and utilisation of, these services. METHOD: Confidential questionnaires were sent to 187 consultants in genitourinary medicine and infectious diseases departments within the United Kingdom and Ireland. One hundred and forty four (77%) replies were suitable for analysis. RESULTS: Seventy five (52.1%) centres had a routine necropsy service, compared with 59 (41.0%) which did not, including 15 (10.4%) with no service provision. Sixty one (42.4%) centres were satisfied with their current service; however, 31 (21.5%) clinics were not satisfied. The majority of service users considered necropsies to be beneficial in the subsequent management of HIV positive patients. CONCLUSION: The provision of services for HIV necropsies varies considerably. We advocate that they should be uniformly available, and that the dissatisfaction with current services should be addressed.

Autopsy↗