84 research outputs found

    How do peer networks support people with personal budgets? : A review of the research evidence from the UK

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    This literature review was conducted to describe the range of organisations and informal groups providing peer support to personal budget users in the UK between the launch of direct payments in 1997 and 2016. Forty-five research reports included relevant evidence. This has been aggregated to show how peer networks supported individual users, as well as to describe their wider role in policy development and implementation. Despite their diversity, the support they provided often had common characteristics. Peer networks fostered collaboration, enhanced communication, built confidence amongst people who were entitled to a personal budget, and applied specialist knowledge that was often derived from the lived experience of network members. None of these characteristic was exclusive to peer networks. However, they may have been more deeply culturally embedded here than in other settings, which perhaps accounts for the positive experiences of support reported in the research literature

    Using local communities to establish geographical boundaries for case studies

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    Aim: To discuss using local communities to establish geographical boundaries in a case study approach. Background: Case study is widely used in the social sciences to explore complex phenomena within a real-life setting. Applying case boundaries is vital to ensure cases are easily identifiable and similar enough to be treated as instances of the same phenomenon. Discussion: Post codes can be used to define geographical boundaries. A broad range of statistical data is collected from these populations including demographic information, which can assist in identifying communities that have issues or characteristics which may benefit from further research. Data collection from communities allows researchers to access appropriate populations. Conclusion: Using local communities to identify case boundaries helps to provide a clear periphery to the case, and generate local solutions to local problems. Implications for research/practice: Researchers using this approach benefit from being able to immerse themselves in the local community. This close engagement helps to ensure local community engagement with research projects and findings

    Mixed methods case study exploring primary care antibiotic prescribing practices and maternal attitudes to the use of antibiotics in children

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    Background. Overuse of antibiotics and inappropriate prescribing has resulted in rapid development of antimicrobial resistance. Most antibiotics in the United Kingdom (71.4%) are prescribed in primary care by general practitioners, with about half prescribed for viral rather than bacterial illnesses. Aims. To explore antibiotic prescribing and factors which may influence maternal decision making to seek antibiotics for their young children. Methods. Data for children under five years was gathered using a mixed methods case study approach. Quantitative general practice antibiotic prescribing data (n= 697 children) was statistically analysed and these results were further explored in six focus groups with mothers (n=19) of children under five. The qualitative data was thematically analysed. Results. Quantitative data identified nearly half of children received antibiotics. Children under one were prescribed the fewest antibiotics. Qualitative focus group data showed mothers trusted their general practitioner to provide expert care for their child and often wanted convenient and timely access to advice and reassurance, rather than treatment. Conclusion. Antibiotics are frequently prescribed for young children in primary care. Healthcare professionals need to understand the maternal influences contributing to antibiotic use in children and consider strategies and interventions to reduce unnecessary antibiotic prescriptions

    Understanding antibiotic seeking behaviour: A qualitative study of mothers of children aged five and under

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    Aims. To explore what factors influence mothers' decisions to seek antibiotics for their young children. Design. Qualitative case study using postcode boundaries. Methods. Thematic analysis of qualitative data from mothers of children under 5, recruited via community playgroups within the case. Data were collected between October 2018 and May 2019, from six focus groups (n = 19) and one-to-one interviews (n = 14). Thematic analysis of the data consisted of six phases: data familiarization; generating initial codes; searching for themes; reviewing themes; defining and naming themes; and producing the report. Results. Mothers were influenced by their belief and trust in antibiotics. Antibiotics were identified as symbolic of recovery, healing and of providing protection and safety. Conclusion. By understanding the symbolic power of antibiotics on maternal decision making, all antibiotic prescribers may be able to offer and provide reassuring alternative and acceptable treatment options to mothers, rather than using antibiotics. Impact. This paper introduces the concept of antibiotics as powerful symbols which influence antibiotic seeking behaviour. This in turn may result in inappropriate use of antibiotics which contributes to the risk of antimicrobial resistance developing. Although the majority of antibiotics are still prescribed by doctors, the number of nurse prescribers has been increasing. Therefore, an increased awareness of antibiotic symbolism, in all prescribing clinicians, is important to enable future local and national strategies to be developed, to support maternal decision making and reduce antibiotic seeking behaviour

    Enhancing practitioners’ confidence in recruitment and consent in the EcLiPSE trial: A mixed-method evaluation of site training – a Paediatric Emergency Research in the United Kingdom and Ireland (PERUKI) study

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    Background: EcLiPSE (Emergency treatment with Levetiracetam or Phenytoin in Status Epilepticus in children) is a randomised controlled trial (RCT) in the United Kingdom. Challenges to success include the need to immediately administer an intervention without informed consent and changes in staffing during trial conduct, mainly due to physician rotations. Using literature on parents' perspectives and research without prior consent (RWPC) guidance, we developed an interactive training package (including videos, simulation and question and answer sessions) and evaluated its dissemination and impact upon on practitioners' confidence in recruitment and consent. Methods: Questionnaires were administered before and immediately after training followed by telephone interviews (mean 11 months later), focus groups (mean 14 months later) and an online questionnaire (8 months before trial closure).Results: One hundred and twenty-five practitioners from 26/30 (87%) participating hospitals completed a questionnaire before and after training. We conducted 10 interviews and six focus groups (comprising 36 practitioners); 199 practitioners working in all recruiting hospitals completed the online questionnaire. Before training, practitioners were concerned about recruitment and consent. Confidence increased after training for explaining (all scale 0-5, 95% CIs above 0 and p values < 0.05): the study (66% improved mean score before 3.28 and after 4.52), randomisation (47% improvement, 3.86 to 4.63), RWPC (72% improvement, 2.98 to 4.39), and addressing parents' objections to randomisation (51% improvement, 3.37 to 4.25). Practitioners rated highly the content and clarity of the training, which was successfully disseminated. Some concerns about staff availability for training and consent discussions remained.Conclusions: Training improved practitioners' confidence in recruitment and RWPC. Our findings highlight the value of using parents' perspectives to inform training and to engage practitioners in trials that are at high risk of being too challenging to conduct

    Seven-step framework to enhance practitioner explanations and parental understandings of research without prior consent in paediatric emergency and critical care trials

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    Background: Alternatives to prospective informed consent enable the conduct of paediatric emergency and critical care trials. Research without prior consent (RWPC) involves practitioners approaching parents after an intervention has been given and seeking consent for their child to continue in the trial. As part of an embedded study in the 'Emergency treatment with Levetiracetam or Phenytoin in Status Epilepticus in children' (EcLiPSE) trial, we explored how practitioners described the trial and RWPC during recruitment discussions, and how well this information was understood by parents. We aimed to develop a framework to assist trial conversations in future paediatric emergency and critical care trials using RWPC. Methods: Qualitative methods embedded within the EcLiPSE trial processes, including audiorecorded practitioner-parent trial discussions and telephone interviews with parents. We analysed data using thematic analysis, drawing on the Realpe et al (2016) model for recruitment to trials. Results: We analysed 76 recorded trial discussions and conducted 30 parent telephone interviews. For 19 parents, we had recorded trial discussion and interview data, which were matched for analysis. Parental understanding of the EcLiPSE trial was enhanced when practitioners: provided a comprehensive description of trial aims; explained the reasons for RWPC; discussed uncertainty about which intervention was best; provided a balanced description of trial intervention; provided a clear explanation about randomisation and provided an opportunity for questions. We present a seven-step framework to assist recruitment practice in trials involving RWPC. Conclusion: This study provides a framework to enhance recruitment practice and parental understanding in paediatric emergency and critical care trials involving RWPC. Further testing of this framework is required

    Exome sequencing in undiagnosed inherited and sporadic ataxias.

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    Inherited ataxias are clinically and genetically heterogeneous, and a molecular diagnosis is not possible in most patients. Having excluded common sporadic, inherited and metabolic causes, we used an unbiased whole exome sequencing approach in 35 affected individuals, from 22 randomly selected families of white European descent. We defined the likely molecular diagnosis in 14 of 22 families (64%). This revealed de novo dominant mutations, validated disease genes previously described in isolated families, and broadened the clinical phenotype of known disease genes. The diagnostic yield was the same in both young and older-onset patients, including sporadic cases. We have demonstrated the impact of exome sequencing in a group of patients notoriously difficult to diagnose genetically. This has important implications for genetic counselling and diagnostic service provision
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