• Evidence of cultural hybridity in responses to epilepsy among Pakistani Muslims living in the UK

      Small, Neil A.; Ismail, Hanif; Rhodes, P.J.; Wright, J. (2005)
      Objectives: To examine how people from Bradford's Pakistani Muslim community experience living with epilepsy. Specifically, the paper addresses social interactions and negotiations with care providers and considers how different understandings of epilepsy are integrated. Methods: Interviews were conducted with a sample of Bradford's Pakistani Muslim community ( n=20). Interviews were analysed to identify themes and significant areas of shared concern. Results: This paper identifies popular, professional and folk sectors contributing to an individual's `health system'. Where sectors overlap, zones of hybridity are created: that is, a person might simultaneously seek help from a doctor and from a religious healer, or might offer explanations for seizures that include neurological and spiritual components. Discussion: While there are many similarities between the experiences of these minority ethnic community members and published work on the lived experience of epilepsy in other communities, there are also important differences that service providers need to recognize and respond to. Differences include forms of cultural expression and specific language needs. Improving communication between professionals and persons with epilepsy needs to be prioritized.
    • How, in what contexts, and why do quality dashboards lead to improvements in care quality in acute hospitals? Protocol for a realist feasibility evaluation

      Randell, Rebecca; Alvarado, Natasha; McVey, Lynn; Greenhalgh, J.; West, R.M.; Farrin, A.; Gale, C.; Parslow, R.; Keen, J.; Elshehaly, Mai; et al. (2020-02-25)
      National audits are used to monitor care quality and safety and are anticipated to reduce unexplained variations in quality by stimulating quality improvement (QI). However, variation within and between providers in the extent of engagement with national audits means that the potential for national audit data to inform QI is not being realised. This study will undertake a feasibility evaluation of QualDash, a quality dashboard designed to support clinical teams and managers to explore data from two national audits, the Myocardial Ischaemia National Audit Project (MINAP) and the Paediatric Intensive Care Audit Network (PICANet). Realist evaluation, which involves building, testing and refining theories of how an intervention works, provides an overall framework for this feasibility study. Realist hypotheses that describe how, in what contexts, and why QualDash is expected to provide benefit will be tested across five hospitals. A controlled interrupted time series analysis, using key MINAP and PICANet measures, will provide preliminary evidence of the impact of QualDash, while ethnographic observations and interviews over 12 months will provide initial insight into contexts and mechanisms that lead to those impacts. Feasibility outcomes include the extent to which MINAP and PICANet data are used, data completeness in the audits, and the extent to which participants perceive QualDash to be useful and express the intention to continue using it after the study period. The study has been approved by the University of Leeds School of Healthcare Research Ethics Committee. Study results will provide an initial understanding of how, in what contexts, and why quality dashboards lead to improvements in care quality. These will be disseminated to academic audiences, study participants, hospital IT departments and national audits. If the results show a trial is feasible, we will disseminate the QualDash software through a stepped wedge cluster randomised trial.
    • Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation findings from the IDEAL programme

      Collins, R.; Hunt, A.; Quinn, Catherine; Martyr, A.; Pentecost, C.; Clare, L. (2022)
      Objectives Dementia can affect language processing and production, making communication more difficult. This creates challenges for including the person’s perspective in research and service evaluation. This study aims to identify methods, tools and approaches that could facilitate meaningful communication with people with moderate-to-severe dementia and support the inclusion of their perspectives. Methods This qualitative study was conducted as part of the IDEAL programme and involved in-depth, semi-structured interviews with 17 dementia research and/or care professionals with expertise in communication. Transcripts were analysed using framework analysis. Findings Three main themes each with sub-themes were identified: (1) Awareness, knowledge and experience; (2) Communication approach and (3) Personalization. A person-centred orientation based on getting to know the participant and developing a bi-directional exchange formed the fundamental context for effective communication. Building on this foundation, an approach using pictures, photographs or objects that are meaningful to the person and appropriate for that person’s preferences and ability could help to facilitate conversations. The findings were integrated into a diagram illustrating how the topics covered by the themes interrelate to facilitate communication. Conclusions Useful skills and approaches were identified to help researchers engage and work with people with moderate-to-severe dementia and ensure their perspective is included. These covered getting to know the participant, using a variety of tangible tools and interactional techniques and considering the environment and context of the conversation.
    • Patient involvement in patient safety: Protocol for developing an intervention using patient reports of organisational safety and patient incident reporting

      Ward, J.K.; McEachan, Rosemary; Lawton, R.; Armitage, Gerry R.; Watt, I.S.; Wright, J.; Yorkshire Quality Safety Research Group (2011)
      BACKGROUND: Patients have the potential to provide a rich source of information on both organisational aspects of safety and patient safety incidents. This project aims to develop two patient safety interventions to promote organisational learning about safety - a patient measure of organisational safety (PMOS), and a patient incident reporting tool (PIRT) - to help the NHS prevent patient safety incidents by learning more about when and why they occur. METHODS: To develop the PMOS 1) literature will be reviewed to identify similar measures and key contributory factors to error; 2) four patient focus groups will ascertain practicality and feasibility; 3) 25 patient interviews will elicit approximately 60 items across 10 domains; 4) 10 patient and clinician interviews will test acceptability and understanding. Qualitative data will be analysed using thematic content analysis.To develop the PIRT 1) individual and then combined patient and clinician focus groups will provide guidance for the development of three potential reporting tools; 2) nine wards across three hospital directorates will pilot each of the tools for three months. The best performing tool will be identified from the frequency, volume and quality of reports. The validity of both measures will be tested. 300 patients will be asked to complete the PMOS and PIRT during their stay in hospital. A sub-sample (N = 50) will complete the PMOS again one week later. Health professionals in participating wards will also be asked to complete the AHRQ safety culture questionnaire. Case notes for all patients will be reviewed. The psychometric properties of the PMOS will be assessed and a final valid and reliable version developed. Concurrent validity for the PIRT will be assessed by comparing reported incidents with those identified from case note review and the existing staff reporting scheme. In a subsequent study these tools will be used to provide information to wards/units about their priorities for patient safety. A patient panel will provide steering to the research. DISCUSSION: The PMOS and PIRT aim to provide a reliable means of eliciting patient views about patient safety. Both interventions are likely to have relevance and practical utility for all NHS hospital trusts.
    • Patients as qualitative data analysts: Developing a method for a process evaluation of the ‘Improving the Safety and Continuity of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial

      Powell, Catherine; Ismail, Hanif; Cleverley, R.; Taylor, A.; Breen, Liz; Fylan, Beth; Alderson, S.L.; Alldred, David P. (2021-08)
      Background: How to meaningfully partner with patients as data analysts remains obscure. A process evaluation of the ‘Improving the Safety and Continuity Of Medicines management at care Transitions’ (ISCOMAT) cluster randomised control trial of an intervention for improving medicines use for people living with heart failure is being conducted. The intervention includes patient held information on heart medicines and care, enhanced communication between hospital and community pharmacists, and increased engagement of community pharmacists with patient care post-hospital discharge. ISCOMAT patients living with heart failure were interviewed about experiences with the intervention. We sought to gain insights from patients on data collected to enhance our understanding of experiences with the intervention. Objective: To develop a method for involving patients as analysts of qualitative data in a process evaluation. Design: Patients and researchers co-analysed qualitative data. A framework method was applied involving; familiarisation, coding, developing an analytical framework and interpretation. The process was facilitated through home working and a workshop with a training component. Results: The co-designed framework enabled researchers to map all further patient interview data. Patients' specialist knowledge enhanced understanding of how the ISCOMAT intervention can be best implemented. Conclusions: Patients’ unique experiences can enhance validity and rigour in data analysis through sharing their interpretations of qualitative data. The involvement process is crucial in elucidating knowledge and avoiding tokenism. As analysts, patients gain an appreciation of research processes, building trust between researchers and patients. Group dynamics and involving patients throughout the whole research process are important considerations.