181 research outputs found

    How organisational arrangements affect service provision

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    This research shows the importance of good organisational support for care giving. Organisational arrangements can shape what individual staff members do in the highly skilled work of meeting resident needs. This may challenge traditional views about care quality that focus attention only on care workers

    What constitutes a high quality discharge summary?:A comparison between the views of secondary and primary care doctors

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    This study aimed to identify any differences in opinion between UK hospital junior doctors and community General Practitioners (GPs) with respect to the ideal content and characteristics of discharge summaries, and to explore junior doctors' training for and awareness of post-discharge requirements of GPs

    The agentic person: shifting the focus of care

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    Volunteer experiences and perceptions of the informed consent process: Lessons from two HIV clinical trials in Uganda.

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    BACKGROUND: Informed consent as stipulated in regulatory human research guidelines requires that a volunteer is well-informed about what will happen to them in a trial. However researchers are faced with a challenge of how to ensure that a volunteer agreeing to take part in a clinical trial is truly informed. We conducted a qualitative study among volunteers taking part in two HIV clinical trials in Uganda to find out how they defined informed consent and their perceptions of the trial procedures, study information and interactions with the research team. METHODS: Between January and December 2012, 23 volunteers who had been in the two trials for over 6 months, consented to be interviewed about their experience in the trial three times over a period of nine months. They also took part in focus group discussions. Themes informed by study research questions and emerging findings were used for content analysis. RESULTS: Volunteers defined the informed consent process in terms of their individual welfare. Only two of the volunteers reported having referred during the trial to the participant information sheets given at the start of the trial. Volunteers remembered the information they had been given at the start of the trial on procedures that involved drawing blood and urine samples but not information about study design and randomisation. Volunteers said that they had understood the purpose of the trial. They said that signing a consent form showed that they had consented to take part in the trial but they also described it as being done to protect the researcher in case a volunteer later experienced side effects. CONCLUSION: Volunteers pay more attention during the consent process to procedures requiring biological tests than to study design issues. Trust built between volunteers and the research team could enhance the successful conduct of clinical trials by allowing for informal discussions to identify and review volunteers' perceptions. These results point to the need for researchers to view informed consent as a process rather than an event

    Rehabilitation as a disability equality issue: a conceptual shift for disability studies?

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    Rehabilitation is a controversial subject in disability studies, often discussed in terms of oppression, normalisation, and unwanted intrusion. While there may be good reasons for positioning rehabilitation in this way, this has also meant that, as a lived experience, it is under-researched and neglected in disabilities literature, as we show by surveying leading disability studies journals. With some notable exceptions, rehabilitation research has remained the preserve of the rehabilitation sciences, and such studies have rarely included the voices of disabled people themselves, as we also demonstrate by surveying a cross-section of rehabilitation science literature. Next, drawing on new research, we argue for reframing access to rehabilitation as a disability equality issue. Through in-depth discussion of two case studies, we demonstrate that rehabilitation can be a tool for inclusion and for supporting an equal life. Indeed, we contend that rehabilitation merits disability researchers' sustained engagement, precisely to ensure that a "right-based rehabilitation" policy and practice can be developed, which is not oppressive, but reflects the views and experiences of the disabled people who rehabilitation should serve

    Embedding patient and public involvement: managing tacit and explicit expectations

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    Background: Evidencing well-planned and implemented patient and public involvement (PPI) in a research project is increasingly required in funding bids and dissemination activities. There is a tacit expectation that involving people with experience of the condition under study will improve the integrity and quality of the research. This expectation remains largely unproblematised and unchallenged. Objective: To critically evaluate the implementation of PPI activity, including co-research in a programme of research exploring ways to enhance the independence of people with dementia. Design: Using critical cases we make visible and explicate theoretical and moral challenges of PPI. Results: Case 1 explores the challenges of undertaking multiple PPI roles in the same study making explicit different responsibilities of being a co-applicant, PPI advisory member and a co-researcher. Case 2 explores tensions which arose when working with carer co-researchers during data collection; here the co-researcher’s wish to offer support and advice to research participants, a moral imperative, was in conflict with assumptions about the role of the objective interviewer. Case 3 defines and examines co-research data coding and interpretation activities undertaken with people with dementia; reporting the theoretical outputs of the activity and questioning whether this was co-researcher analysis or PPI validation. Conclusion: PPI activity can empower individual PPI volunteers and improve relevance and quality of research but it is a complex activity which is socially constructed in flexible ways with variable outcomes. It cannot be assumed to be simple or universal panacea for increasing the relevance and accessibility of research to the public

    Findings from the University of East Anglia's evaluation of the Ipswich/Suffolk multi-agency strategy on prostitution following the five murders in 2006

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    This paper provides a summary of the main findings of an evaluation of a new multi-agency Strategy set up to tackle on-street sex-working, after five prostitutes were murdered in the English county town of Ipswich. It focuses on the outcomes of the Strategy’s four objectives, including their cost-effectiveness. It also offers an insight into the lives of the women who were previously involved in street sex-working, the means by which the Strategy helped them to move towards exiting this work, and the ways in which younger people identified as being at risk of entering it might be prevented from doing so

    Older care-home residents as collaborators or advisors in research: a systematic review

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    Background: patient and public involvement (PPI) in research can enhance its relevance. Older care-home residents are often not involved in research processes even when studies are care-home focused. Objective: to conduct a systematic review to find out to what extent and how older care-home residents have been involved in research as collaborators or advisors. Methods: a systematic literature search of 12 databases, covering the period from 1990-September 2014 was conducted. A lateral search was also carried out. Standardised inclusion criteria were used and checked independently by two researchers. Results: 19 reports and papers were identified relating to 11 different studies. Care-home residents had been involved in the research process in multiple ways. Two key themes were identified: (i) the differences in residents’ involvement in small-scale and large-scale studies, (ii) the barriers to and facilitators of involvement. Conclusions: small-scale studies involved residents as collaborators in participatory action research, whereas larger studies involved residents as consultants in advisory roles. There are multiple facilitators of and barriers to involving residents as PPI members. The reporting of PPI varies. While it is difficult to evaluate the impact of involving care-home residents on the research outcomes, impact has been demonstrated from more inclusive research processes with care-home residents. The review shows that older care-home residents can be successfully involved in the research process
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