37 research outputs found

    Experience-based co-design - Adapting the method for a researcher-initiated study in a multi-site setting

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    YesBackground: Experience-based co-design (EBCD) brings patients and staff together to co-design services. It is normally conducted in one organization which initiates and implements the process. We used the traditional EBCD method with a number of adaptations as part of a larger research study in the British National Health Service.Methods: The primary aim was to assess the feasibility and acceptability of conduct-ing research-initiated EBCD, to enhance intervention development prior to testing. As well as embedding the method in a research study, there were 3 further key adap-tations: (a) working across primary and secondary care sectors, (b) working on multi-ple sites and (c) incorporating theory-informed analysis.Results: We recruited four sites (covering both primary and secondary care) and, on each site, conducted the initial traditional EBCD meetings, with separate staff and patient groupsā€”followed by a single joint patient-staff event, where four priority areas for co-design were agreed. This event was driven by theory-informed analysis, as well as the traditional trigger film of patient experiences. Each site worked on one priority area, and the four co-design groups met over 2-3 months to design prototype tools. A second joint event was held (not usually undertaken in single-site EBCD) where they shared and compared outputs. The research team combined elements of these outputs to create an intervention, now being tested in a cluster randomized controlled trial.Conclusions: EBCD can be successfully adapted for use across an entire patient pathway with multiple organizations and as part of a research process to identify an intervention for subsequent testing in a randomized trial. Our pragmatic approach used the patient experience to identify areas for improvement and co-designed an intervention which directly reflected patient priorities.National Institute for Health Research programme ā€˜Improving the safety and continuity of medicines management at care transitions (ISCOMAT)ā€™ RPā€PGā€0514ā€2009

    Supporting medicines management for older people at care transitions ā€“ a theory-based analysis of a systematic review of 24 interventions

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    Abstract: Background: Older patients are at severe risk of harm from medicines following a hospital to home transition. Interventions aiming to support successful care transitions by improving medicines management have been implemented. This study aimed to explore which behavioural constructs have previously been targeted by interventions, which individual behaviour change techniques have been included, and which are yet to be trialled. Method: This study mapped the behaviour change techniques used in 24 randomised controlled trials to the Behaviour Change Technique Taxonomy. Once elicited, techniques were further mapped to the Theoretical Domains Framework to explore which determinants of behaviour change had been targeted, and what gaps, if any existed. Results: Common behaviour change techniques used were: goals and planning; feedback and monitoring; social support; instruction on behaviour performance; and prompts/cues. These may be valuable when combined in a complex intervention. Interventions mostly mapped to between eight and 10 domains of the Theoretical Domains Framework. Environmental context and resources was an underrepresented domain, which should be considered within future interventions. Conclusion: This study has identified behaviour change techniques that could be valuable when combined within a complex intervention aiming to support post-discharge medicines management for older people. Whilst many interventions mapped to eight or more determinants of behaviour change, as identified within the Theoretical Domains Framework, careful assessment of the barriers to behaviour change should be conducted prior to intervention design to ensure all appropriate domains are targeted

    Post-discharge medicines management: the experiences, perceptions and roles of older people and their family carers

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    YesMultiple changes are made to older patients' medicines during hospital admission, which can sometimes cause confusion and anxiety. This results in problems with post-discharge medicines management, for example medicines taken incorrectly, which can lead to harm, hospital readmission and reduced quality of life. To explore the experiences of older patients and their family carers as they enacted post-discharge medicines management. Semi-structured interviews took place in participants' homes, approximately two weeks after hospital discharge. Data analysis used the Framework method. Recruitment took place during admission to one of two large teaching hospitals in North England. Twenty-seven participants aged 75 plus who lived with long-term conditions and polypharmacy, and nine family carers, were interviewed. Three core themes emerged: impact of the transition, safety strategies and medicines management role. Conversations between participants and health-care professionals about medicines changes often lacked detail, which disrupted some participants' knowledge and medicines management capabilities. Participants used multiple strategies to support post-discharge medicines management, such as creating administration checklists, seeking advice or supporting primary care through prompts to ensure medicines were supplied on time. The level to which they engaged with these activities varied. Participants experienced gaps in their post-discharge medicines management, which they had to bridge through implementing their own strategies or by enlisting support from others. Areas for improvement were identified, mainly through better communication about medicines changes and wider involvement of patients and family carers in their medicines-related care during the hospital-to-home transition.This work was supported by the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC). This independent research is funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0317-20010)

    Can user testing of a clinical trial patient information sheet make it fit-for-purpose? - a randomized controlled trial

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    Background: The participant information sheet (PIS) provided to potential trial participants is a critical part of the process of valid consent. However, there is long-standing concern that these lengthy and complex documents are not fit-for-purpose. This has been supported recently through the application of a performance-based approach to testing and improving readability called user testing. This method is now widely used to improve patient medicine leaflets - determining whether people can find and understand key facts. This study applied for the first time a controlled design to determine whether a PIS developed through user testing had improved readability over the original, using a sheet from a UK trial in acute myeloid leukemia (AML16). Methods: In the first phase the performance of the original PIS was tested on people in the target group for the trial. There were three rounds of testing including 50 people in total - with the information revised according to its performance after each of the first 2 rounds. In the second phase, the revised PIS was compared with the original in a parallel groups randomised controlled trial (RCT) A total of 123 participants were recruited and randomly allocated to read one version of the PIS to find and show understanding of 21 key facts. Results: The first, developmental phase produced a revised PIS significantly altered in its wording and layout. In the second, trial phase 66% of participants who read the revised PIS were able to show understanding of all aspects of the trial, compared with 15% of those reading the original version (Odds Ratio 11.2; Chi-square = 31.5 p < .001). When asked to state a preference, 87.1% participants chose the revised PIS (Sign test p < .001). Conclusions: The original PIS for the AML16 trial may not have enabled valid consent. Combining performance-based user testing with expertise in writing for patients and information design led to a significantly improved and preferred information sheet. User testing is an efficient method for indicating strengths and weaknesses in trial information, and Research Ethics Committees and Institutional Review Boards should consider requesting such testing, to ensure that PIS are fit-for-purpose
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