157 research outputs found

    Representation of South Asian people in randomised clinical trials: analysis of trials' data

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    Excluding patients of ethnic minority groups from clinical trials is unethical, introduces substantial bias, and means that findings are based on unrepresentative populations. The National Institutes of Health Revitalization Act 1993 requires that all minority groups be represented in the sample in research projects supported by the National Institutes of Health, unless there is a clear and compelling justification not to do so. In the United Kingdom no such legislation exists

    How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives?

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    Background The National Care of the Dying Audit—Hospitals (NCDAH) is used as a method to evaluate care for dying patients in England. An additional component to the 2013/2014 audit was the Local Survey of Bereaved Relatives Views using the ‘Care Of the Dying Evaluation’ (CODE) questionnaire. Aim Within the context of the NCDAH audit, to evaluate quality of care provided to dying patients and their families in acute hospitals from the perspective of bereaved relatives. Design Postbereavement survey to bereaved relatives. Setting/participants For acute hospitals wishing to participate, consecutive ‘expected’ adult deaths occurring between 1 May and 30 June 2013 were identified and the CODE questionnaire was sent to the next-of-kin. Results From 3414 eligible next-of-kin, 95 (2.8%) were excluded due to being involved in a complaint procedure and 1006 (29.5%) due to insufficient next-of-kin details. From the remaining 2313 potential participants, 858 returned a completed CODE questionnaire (37.1% response rate). Generally, symptoms were perceived to be well controlled with 769 (91%) participants reporting that either no pain was present or only there ‘some of the time’. Unmet information needs, however, was a recognised area for improvement, for example, 230 (29%) reporting having a discussion about hydration would have been beneficial. Conclusions Adopting a postbereavement survey to NCDAH appears to be feasible, acceptable and a valuable addition. On the whole, the majority of participants reported good or excellent care. A small but significant minority, however, perceived poor quality of patient care with clear and timely communication urgently needed

    Reasons for and consequences of missed appointments in general practice in the UK: questionnaire survey and prospective review of medical records

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    Background Missed appointments are a common occurrence in primary care in the UK, yet little is known about the reasons for them, or the consequences of missing an appointment. This paper aims to determine the reasons for missed appointments and whether patients who miss an appointment subsequently consult their general practitioner (GP). Secondary aims are to compare psychological morbidity, and the previous appointments with GPs between subjects and a comparison group. Methods Postal questionnaire survey and prospective medical notes review of adult patients missing an appointment and the comparison group who attended appointments over a three week period in seven general practices in West Yorkshire. Results Of the 386 who missed appointments 122 (32%) responded. Of the 386 in the comparison group 223 (58%) responded, resulting in 23 case-control matched pairs with complete data collection. Over 40% of individuals who missed an appointment and participated said that they forgot the appointment and a quarter said that they tried very hard to cancel the appointment or that it was at an inconvenient time. A fifth reported family commitments or being too ill to attend. Over 90% of the patients who missed an appointment subsequently consulted within three months and of these nearly 60% consulted for the stated problem that was going to be presented in the missed consultation. The odds of missing an appointment decreased with increasing age and were greater among those who had missed at least one appointment in the previous 12 months. However, estimates for comparisons between those who missed appointments and the comparison group were imprecise due to the low response rate. Conclusion Patients who miss appointments tend to cite practice factors and their own forgetfulness as the main reasons for doing so, and most attend within three months of a missed appointment. This study highlights a number of implications for future research. More work needs to be done to engage people who miss appointments into research in a meaningful way

    'A light in a very dark place' : The role of a voluntary organisation providing support for those affected by encephalitis

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    Voluntary organisations are seen as contributing to the ‘democratisation’ of health and social care. Little, however, is written about their role and this paper, by focusing on the work of The Encephalitis Society, provides insights into the challenges facing voluntary organisations as they manage twin roles as service providers and advocates, of people with neurological disorders. Two studies are presented: a review conducted by the Society, focusing on patient’s experiences of neurological services; and an external evaluation of the Society’s current provision. The first, based on a postal survey of its members affected by encephalitis (n = 339), illustrates the Society’s advocacy role. The survey provided support for the Association of British Neurologists’ recommendation for nationally agreed standards of care. The second study, a postal survey of recent contacts (n = 76) and in-depth telephone interviews (n = 22), illustrates the Society’s value role as a service provider and supports its role in helping rehabilitate affected individuals and their families. These studies provided the Society with information for policy and service development. Importantly, providing the basis of informed action and partnership with stakeholders and informing the organisation’s sense of purpose, in the changing context of welfare provision in the UK

    Strategies for improving patient recruitment to focus groups in primary care: a case study reflective paper using an analytical framework

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    <p>Abstract</p> <p>Background</p> <p>Recruiting to primary care studies is complex. With the current drive to increase numbers of patients involved in primary care studies, we need to know more about successful recruitment approaches. There is limited evidence on recruitment to focus group studies, particularly when no natural grouping exists and where participants do not regularly meet. The aim of this paper is to reflect on recruitment to a focus group study comparing the methods used with existing evidence using a resource for research recruitment, PROSPeR (Planning Recruitment Options: Strategies for Primary Care).</p> <p>Methods</p> <p>The focus group formed part of modelling a complex intervention in primary care in the Resources for Effective Sleep Treatment (REST) study. Despite a considered approach at the design stage, there were a number of difficulties with recruitment. The recruitment strategy and subsequent revisions are detailed.</p> <p>Results</p> <p>The researchers' modifications to recruitment, justifications and evidence from the literature in support of them are presented. Contrary evidence is used to analyse why some aspects were unsuccessful and evidence is used to suggest improvements. Recruitment to focus group studies should be considered in two distinct phases; getting potential participants to contact the researcher, and converting those contacts into attendance. The difficulty of recruitment in primary care is underemphasised in the literature especially where people do not regularly come together, typified by this case study of patients with sleep problems.</p> <p>Conclusion</p> <p>We recommend training GPs and nurses to recruit patients during consultations. Multiple recruitment methods should be employed from the outset and the need to build topic related non-financial incentives into the group meeting should be considered. Recruitment should be monitored regularly with barriers addressed iteratively as a study progresses.</p

    A qualitative assessment of implementing a cross-cultural survey on cancer wards in Denmark - a description of barriers

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    <p>Abstract</p> <p>Background</p> <p>Research into migration and health is often confronted with methodological challenges related to the identification of migrants in various settings. Furthermore, it is often difficult to reach an acceptable level of participation among migrant groups in quantitative research. The aim of this study is to conduct a qualitative assessment of the barriers encountered during the implementation of a cross-cultural survey on cancer wards in Copenhagen, Denmark.</p> <p>Methods</p> <p>Participant observation at the involved wards was combined with qualitative interviews with selected nurses and informal talks with a wider group of nurses at the wards involved in the survey.</p> <p>Results</p> <p>One possible way to increase the participation of migrant patients in research is through the involvement of the hospital staff in contact with patients. Involvement of nurses on cancer wards in the delivery of questionnaires to patients was challenging, despite a general willingness to participate in psychosocial research. The main difficulties were found to be both external (policy changes, general strike among nurses) and internal on the wards (heavy workload, lack of time, focus on medical aspects of cancer rather than psychosocial aspects). These factors interacted and resulted in a lower priority being given to psychosocial research. Further, nurses expressed a feeling that researchers in general did not recognize their contribution in research, making it more difficult to engage fully in studies.</p> <p>Conclusions</p> <p>Involving hospital staff in research is feasible but not straightforward. Awareness of the influence of possible external and internal factors and efforts to deal with these factors are fundamental to the successful implementation of psychosocial cancer research in a hospital setting.</p
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