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PubMed2004

The scope for qualitative methods in research and clinical trials in dementia.

In the evaluation of drugs, the randomised double-blind placebo controlled trial is the 'gold standard'. This method, based on a positivist paradigm, answers questions about efficacy and side-effects of treatments that are accepted as valid, reliable and generalisable, provided the study is well designed and properly conducted. In contrast, qualitative research methodologies, originating from the social sciences, embrace a variety of approaches, including phenomenological and other paradigms. Within clinical and health services research, qualitative approaches view the world more subjectively, acknowledging that the researcher is part of what is researched, focusing on meanings and understanding of experience, rather than on what can be reduced to quantitative measures. They can develop new ideas through induction from data, rather than confirming or refuting hypotheses. Qualitative methods have improved our understanding of the experiences of people with dementia and, if used alongside clinical trials, could be used to improve the relevance of outcomes to patients, compliance and user involvement. They could also possibly generate new measures of efficacy and effectiveness in severe dementia.

Aged↗

PubMed2003

Satisfaction with primary care: the perspectives of people with schizophrenia.

BACKGROUND: Schizophrenia affects up to 1% of the population in the UK. People with schizophrenia use the National Health Service frequently and over a long period of time. However, their views on satisfaction with primary care are rarely sought. OBJECTIVES: This study aimed to explore the elements of satisfaction with primary care for people with schizophrenia. METHOD: A primary care-based study was carried out using semi-structured interviews with 45 patients with schizophrenia receiving shared care with the Northern Birmingham Mental Health Trust between 1999 and 2000. RESULTS: Five major themes that affect satisfaction emerged from the data: the exceptional potential of the consultation itself; the importance of aspects of the organization of primary care; the construction of the user in the doctor-patient relationship; the influence of stereotypes on GP behaviour; and the importance of hope for recovery. CONCLUSION: Satisfaction with primary care is multiply mediated. It is also rarely expected or achieved by this group of patients. There is a significant gap between the rhetoric and the reality of user involvement in primary care consultations. Acknowledging the tensions between societal and GP views of schizophrenia as an incurable life sentence and the importance to patients of hope for recovery is likely to lead to greater satisfaction with primary health care for people with schizophrenia.

Adult↗

PubMed2005

Consumers leading public consultation: the general public's knowledge of stroke.

BACKGROUND: The need to make health services and research relevant to the general public through user involvement and consultation has been recognized and formalized in guidelines and research publications. OBJECTIVES: We had the following objectives (i) to involve and enable lay people to identify and direct a research study as co-researchers consulting members of the general public about their awareness and knowledge of stroke and stroke risk; and (ii) to consult members of the general public aged between 40 and 65 years old to identify what they know about the signs of stroke and potential risk factors in order to inform local public health programmes. METHODS: A 20-point multiple choice questionnaire was designed by two consumers trained in research skills at a year long training programme. The questionnaire was sent to 250 randomly selected patients from one general practice in North Staffordshire. RESULTS: A 57% response rate was achieved (142 out of 250), with 139 being appropriate for analysis. The current knowledge and awareness of stroke and stroke risk was relatively good. Almost 90% knew that stroke occurs in the brain and most correctly identified the causes as related to impaired blood supply to the brain. Further, upon recognizing signs of stroke, 96% thought it was 'extremely important' to get immediate treatment for someone who may be having a stroke. Seventy-eight percent of respondents stated that they would like further information about stroke. The most popular sources of information identified were: their general practice (51%); television and radio (36%); and friends and family (33%). CONCLUSION: The consumers' involvement has essentially allowed lay people to consult other members of the general public about health issues of national priority with specific local relevance. The involvement of consumers in research needs to be considered as worthwhile if it is to have any lasting impact on local or national services. Future research using consumer involvement will need to decide upon the balance between scientific integrity and the level of consumer direction.

Adult↗

PubMed2000

Rhetoric or reality? The participation of disabled people in NGO planning.

User involvement in planning is now well established in the fields of both health and development. This study looks at one particular client group, namely disabled people, and addresses the question: How do selected European-based international non-governmental organizations (INGOs) facilitate the participation of disabled people in their planning process? The study was exploratory in nature, using both quantitative and qualitative methods to answer the research question. Data were collected using a self-administered questionnaire with 18 INGOs, which was supported by five semi-structured interviews and 20 'e-mail dialogues' with key informants. The findings indicate that the INGOs involve disabled people's organizations (DPOs) in their planning of services and projects in a variety of ways. Most commonly this is through sharing information with them, but consulting them, including them in decision-making or supporting action initiated by them are other less frequent methods of involvement. INGOs with a specific disability focus involve disabled people in the ways described above more frequently than other INGOs. Although most INGOs regularly provide information and consult DPOs, if there is no assurance that ideas raised will be implemented, then there is no guarantee of DPOs' participation in the planning process of these INGOs. The focus of an INGO and the nature of its projects affect how disabled people are involved in planning, whereas the size of an INGO has little effect. INGOs thus far have failed to match their expressed intentions about participation, but as they help to strengthen DPOs, encourage their formation and move to make disability an issue that cuts across sectoral boundaries, INGOs are changing. There is still a lot of rhetoric about participation, but the participation of disabled people in the planning process of INGOs is a growing reality.

Community Participation↗

PubMed2000

Democratic prioritization of maternity care: a rational basis for planning a clinical effectiveness programme.

BACKGROUND: The aim of the study was to evaluate the use of a democratic process for prioritizing the ASQUAM (Achieving Sustainable Quality in Maternity) clinical effectiveness programme. METHODS: Twenty-two improvements in the standards of maternity care were chosen as top-topic priorities at the 1996 and 1997 ASQUAM meetings. We wished to assess the relative priorities of local and national delegates, by comparing their voting patterns at the two meetings. The setting was North Staffordshire ASQUAM prioritization days, and the subjects were all the delegates at the 1996 and 1997 ASQUAM meetings. Main outcome measures were comparison of numbers of votes cast by local and national delegates for each of the 20 topics presented at the two ASQUAM meetings, and proportions of the 11 top-topics decided at each meeting that were chosen by local and national delegates. RESULTS: In 1996, significantly more local than national delegates voted for two topics related to maternal mortality or morbidity (incontinence and hypertensive diseases of pregnancy), but there were no statistically significant differences between the proportions of votes cast for any of the other 18 topics presented on the day. Indeed, local delegates had prioritized 11/11 of the final top-topics, and only one was omitted by the national delegates (10/11). In 1997, significantly more national than local delegates voted for three topics relating to professional stress levels, user involvement in working groups and antibiotic prophylaxis, but there were no statistically significant differences between the proportions of votes cast for any of the other 17 topics presented on the day. Again, local delegates had prioritized 11/11 of the final topics, with only one being omitted by the national delegates (10/11). CONCLUSION: There appeared to be a remarkable concordance between local and national delegates at both meetings, suggesting an underlying rationality to decision making. We believe this to be a reflection of the process of careful evaluation of outcome and intervention supported by the protection of a secret ballot, allowing free expression of individual's values.

Community Health Planning↗

PubMedDate not supplied

The information requirements of people with cancer: where to go after the "patient information leaflet"?

Information is crucial for people with cancer for both successful treatment and rehabilitation and to facilitate user involvement and informed decision making. Research has tended to concentrate on biomedical sources, such as hospital-produced information. There have been few inductive investigations of patients' use of information available outside this environment, despite the media and Internet being identified as pervasive sources of cancer information. This article reports on a study that utilized naturalistic inquiry to explore the extent and manner in which the media and Internet are utilized as information sources by people with cancer. Results confirm that the media was used considerably by the study sample and was an important contributor to knowledge and facilitator for decision making. Participants were not passive receivers of media messages but interpreted it depending on their particular needs or their rating of the media source. Consumption of media-produced information was constrained by certain factors, such as the participants' physical inability to access sources, and needs were not always satisfied because media discourse and "newsworthiness" restricted the reporting of what was sought. The study highlights the importance of the media and Internet as an information source for people with cancer and calls for a greater awareness of this phenomenon.

Adult↗

PubMed1985

Strategic planning for health care management information systems.

Using a planning methodology and a structured design technique for analyzing data and data flow, information requirements can be derived to produce a strategic plan for a management information system. Such a long-range plan classifies information groups and assigns them priorities according to the goals of the organization. The approach emphasizes user involvement.

Financial Management↗

PubMed1994

Focus on quality: profiling physicians' practice patterns.

This article presents a physician practice profiling system developed using Medicare data to evaluate the quality of care provided by primary care physicians. We discuss four attributes to physicians' practice profiles that make them useful for quality improvement: flexibility, user involvement in developing profiles, explicit plans for evaluation, and fairness to groups of providers. This system serves as a model for physician profiling with a focus on quality of care measurement.

Aged↗

PubMed1995

Setting standards.

A method of involving users and providers in residential care for older people was used to develop standards of care and outcome indicators. The standards were prioritized using the paired comparison technique. Describes the method and the outcomes of the processes. These include 28 standards relating to the quality of care developed by providers and service users.

Aged↗

PubMed2005

Nonmetric calibration of camera lens distortion: differential methods and robust estimation.

This paper addresses the problem of calibrating camera lens distortion, which can be significant in medium to wide angle lenses. Our approach is based on the analysis of distorted images of straight lines. We derive new distortion measures that can be optimized using nonlinear search techniques to find the best distortion parameters that straighten these lines. Unlike the other existing approaches, we also provide fast, closed-form solutions to the distortion coefficients. We prove that including both the distortion center and the decentering coefficients in the nonlinear optimization step may lead to instability of the estimation algorithm. Our approach provides a way to get around this, and, at the same time, it reduces the search space of the calibration problem without sacrificing the accuracy and produces more stable and noise-robust results. In addition, while almost all existing nonmetric distortion calibration methods needs user involvement in one form or another, we present a robust approach to distortion calibration based on the least-median-of-squares estimator. Our approach is, thus, able to proceed in a fully automatic manner while being less sensitive to erroneous input data such as image curves that are mistakenly considered projections of three-dimensional linear segments. Experiments to evaluate the performance of this approach on synthetic and real data are reported.

Algorithms↗

PubMed2005

From patients to providers: prospects for self-care skills trainers in the National Health Service.

Changes in the National Health Service (NHS) workforce and user involvement have been key areas of contemporary health care policy. Potentially, the current separation of the agendas for patient participation and reconfiguration of the workforce are being brought closer together in the NHS through the Expert Patients Programme (EPP), and its potential to create a new community health 'workforce' of self-management and self-care skills trainers and tutors. The aim of the present paper is to assess the establishment and prospects of these trainers as a new workforce role in the EPP and the NHS. This is done through policy analysis and process evaluation recording the development and implementation of the EPP in the NHS. Telephone interviews with individual trainers were undertaken in order to identify the way in which they are being introduced into the NHS. A representative sample of 19 trainers from the 26 teams covering all the primary care trusts (PCTs) in England were interviewed. The EPP trainers are employed and appointed by the Department of Health and assist PCTs to run EPP courses. The analysis of trainer perspectives illuminated some of the tensions inherent in this new role, which emerge from the consequences of having a long-term condition, their relationship to other occupations operating within primary care and their structural position within the NHS. Prospects for the future development of self-management trainers remain uncertain. Two likely outcomes are examined. The first is that trainers and volunteer tutors will become increasingly integrated as a semi-professionalised group within the primary care workforce. The other option is for trainers to become freelance consultants commissioned by PCTs to run local self-management, self-care support or EPP programmes with the consequence of establishing a more distant relationship with mainstream NHS provision.

Female↗

PubMed2004

The user perspective: respected or rejected in mental health care?

The purpose of this study was to examine the extent to which patient views influence treatment planning by measuring the level of agreement between patients and health workers regarding patient needs as well as the impact of patient wishes on decision making when viewpoints conflict. Data on patient characteristics and needs were collected for a sample of 1080 patients within Norwegian mental health care using patient interviews and health worker ratings. Results of the assessment were then reviewed by multidisciplinary treatment teams responsible for making decisions regarding patient needs for services. On average, patients, health workers, and teams identified 4.3 (SD = 4.2), 9.3 (SD = 5.5), and 10.3 (SD = 5.7), respectively, of 40 possible needs per patient. In cases where patient and health workers disagreed on the presence of a need, the teams tended to concur with the health worker. Interestingly, health care workers and teams were far more inclined than their patients to identify needs related to professional monitoring and follow-up. Results may indicate that contemporary tenets in mental health care regarding user involvement and autonomy are not sufficiently emphasized in practice.

Adult↗

PubMed2004

Mastery in patients with schizophrenia living in the community: relationship to sociodemographic and clinical characteristics, needs for care and support, and social network.

In line with user involvement and empowerment in individuals who suffer from a severe mental illness, the sense of mastery is important. Few studies have investigated factors that contribute to mastery in individuals with schizophrenia. The aims of the present 18-month follow-up study were to investigate associations between mastery and clinical and sociodemographic factors, needs for care and support and social network, and to investigate whether changes in mastery were related to changes with regard to these aspects in a group of patients (n = 120) with schizophrenia living in the community. Structural interviews were performed at baseline and after 18 months. Pearlin's mastery scale, the Camberwell Assessment of Needs (CAN), the Interview Schedule for Social Interaction (ISSI), and the Brief Psychiatric Rating Scale (BPRS) were used on both interview occasions. A stepwise regression analysis showed a negative relationship between psychopathology, especially affective and negative symptoms, and mastery. Stronger mastery was associated with younger age and less severe basic needs. In total psychopathology, age and basic needs explained 50.7% of the variance in mastery. Changes in mastery were positively correlated to changes in access to social contact but negatively correlated to changes in affective symptoms. In order to target mastery in individuals with schizophrenia, the community-based nursing services need to develop, implement, and evaluate interventions that are effective for psychiatric symptoms, social skills performance, and needs for care and support in areas of living, nutrition, and daytime activities.

Adaptation, Psychological↗

PubMed2004

Achieving progress through clinical governance? A national study of health care managers' perceptions in the NHS in England.

BACKGROUND: A national cross sectional study was undertaken to explore the perceptions concerning the importance of, and progress in, aspects of clinical governance among board level and directorate managers in English acute, ambulance, and mental health/learning disabilities (MH/LD) trusts. PARTICIPANTS: A stratified sample of acute, ambulance, and mental health/learning disabilities trusts in England (n = 100), from each of which up to 10 board level and 10 directorate level managers were randomly sampled. METHODS: Fieldwork was undertaken between April and July 2002 using the Organisational Progress in Clinical Governance (OPCG) schedule to explore managers' perceptions of the importance of, and organisational achievement in, 54 clinical governance competency items in five aggregated domains: improving quality; managing risks; improving staff performance; corporate accountability; and leadership and collaboration. The difference between ratings of importance and achievement was termed a shortfall. RESULTS: Of 1916 individuals surveyed, 1177 (61.4%) responded. The competency items considered most important and recording highest perceived achievement related to corporate accountability structures and clinical risks. The highest shortfalls between perceived importance and perceived achievement were reported in joint working across local health communities, feedback of performance data, and user involvement. When aggregated into domains, greatest achievement was perceived in the assurance related areas of corporate accountability and risk management, with considerably less perceived achievement and consequently higher shortfalls in quality improvement and leadership and collaboration. Directorate level managers' perceptions of achievement were found to be significantly lower than those of their board level colleagues on all domains other than improving performance. No differences were found in perceptions of achievement between different types of trusts, or between trusts at different stages in the Commission for Health Improvement (CHI) review cycle. CONCLUSIONS: While structures and systems for clinical governance seem well established, there is more perceived progress in areas concerned with quality assurance than quality improvement. This study raises some uncomfortable questions about the impact of CHI review visits.

Acute Disease↗

PubMed1992

Changes? What changes? The views of the European patients' movement.

People on the receiving end of mental health services have an increasingly important role to play in the transformation of mental health care. It is argued that user involvement in itself does not guarantee a good outcome, but we need to take the views of (ex-)patients seriously without trying to fit them into theories. Dealing with the, often uncomfortable, relationship between patients and mental health professionals, and that between patients and relatives' organisations, two main strands in the European patients' movement are identified: those who seek to abolish psychiatry (abolitionists) and those who seek to reform it (reformists).

Attitude of Health Personnel↗

PubMed2005

Multi-agency working in support of people with intellectual disabilities.

Although health and social services in Northern Ireland are jointly commissioned and delivered, the recent emphasis in government policy on multi-agency working for people with learning disabilities has not extended as yet to the region. A qualitative research study, with informants drawn from a range of sectors and agencies beyond health and social services, nonetheless identified at least 24 different organizations who were participating in some form of joint working. The benefits were seen to outweigh potential difficulties and respondents identified the factors that they had found facilitated joint working as well as the obstacles to it. These centred on the need to build relationships among participants, creating opportunities for partnership working to occur and increasing the capacity of individuals and organizations to work together. The need for further evaluation and research into system change and user involvement is highlighted.

Cooperative Behavior↗

PubMed2006

Paying the piper and calling the tune? Commissioners' evaluation of advocacy services for people with learning disabilities.

Increases in funding of advocacy schemes are leading to their general expansion in the UK. Little is known of how their activities are evaluated by funders. This article examines how local authorities evaluate the outcomes of advocacy schemes. It reports on and discusses the findings of a survey of local authorities. Respondents identified the types of support they provided to advocacy schemes and their requirements for service reports. Data are presented on the length of time that schemes have been funded, geographical variations and whether schemes are generalist or specialist. This analysis is set in the context of discussion with stakeholders. The authors conclude that monitoring and review systems are not well known or extensively used, that while user involvement in evaluation is seen as appropriate this is not well developed, but that advocacy services themselves are interested in contributing to processes of improvement and accountability.

Humans↗

PubMed2003

Multimedia software to help caregivers cope.

OBJECTIVE: This report describes the design and evaluation of a software application to help carers cope when faced with caring problems and emergencies. DESIGN: The design process involved users at each stage to ensure the content of the software application was appropriate, and the research team carefully considered the requirements of disabled and elderly users. MEASUREMENTS: Focus group discussions and individual interviews were conducted in five European countries to ascertain the needs of caregivers in this area. The findings were used to design a three-part multimedia software application to help family caregivers prepare to cope with sudden, unexpected, and difficult situations that may arise during their time as a caregiver. This prototype then was evaluated via user trials and usability questionnaires to consider the usability and acceptance of the application and any changes that may be required. RESULTS: User acceptance of the software application was high, and the key features of usability such as content, appearance, and navigation were highly rated. In general, comments were positive and enthusiastic regarding the content of the software application and relevance to the caring situation. CONCLUSION: The software application has the potential to offer information and support to those who are caring for the elderly and disabled at home and to help them prepare for a crisis.

Aged↗