6 results found
Papageorgiou V, Jones K, Halliday B, et al., 2021, A qualitative exploration of participant and investigator perspectives from the TRED-HF trial, ESC Heart Failure, Vol: 8, Pages: 3760-3768, ISSN: 2055-5822
Aim We explored the experiences and motivations of participants and staff who took part in the TRED-HF trial (Therapy withdrawal in REcovered Dilated cardiomyopathy). MethodsWe conducted a qualitative study, using semi-structured interviews, with participants (n=12) and the research team (n=4) from the TRED-HF trial. Interviews were carried out in 2019 and were audio-recorded and transcribed. Data were managed using NVivo and analysed using framework analysis. A patient representative provided guidance on the interpretation of findings and presentation of themes to ensure these remained meaningful, and an accurate representation, to those living with dilated cardiomyopathy.ResultsThree key themes emerged from the data: (1) perception of health; (2) experiences and relationships with healthcare services and researchers; and (3) perception of risk. Study participants held differing perceptions of their health; some did not consider themselves to have a heart condition or disagreed with the medical term ‘heart failure’. Relationships between participants, research staff and clinical management teams influenced participants’ experiences and decision-making during the trial, including following clinical advice. There were differences in participants’ perceptions of risk and their decisions to take heart failure medication after the trial was completed. Although the original TRED-HF trial did not provide the results many had hoped for, a strong motivator for taking part was the opportunity to withdraw medication in a safely monitored environment which had been previously considered by some participants before. Investigators acknowledged that the insights gained from the study can now be used to support evidence-based conversations with patients.Conclusion For people whose dilated cardiomyopathy is in remission, decisions to continue, reduce or stop their medication are influenced by perceptions of personal health, perceive risk and the important o
Day S, Viney W, Bruton J, et al., 2021, Past-futures in experimental care: breast cancer and HIV medicine, New Genetics and Society, Vol: 40, Pages: 449-472, ISSN: 1463-6778
Cambrosio et al. (2018. “Extending Experimentation: Oncology’s Fading Boundary Between Research and Care.” New Genetics and Society 37 (3): 207–226) argue that “experimental care” in contemporary oncology involves the rapid merging of patient research and care, and invite further study into developments across other health conditions. We present a 2018–2019 study of experimental breast cancer care in an urban clinical setting in the light of two other studies in the same hospital group: in the same cancer service (2013–14) and, prompted by these earlier findings, an interview study in HIV services (2014–15). We found that patients and staff anticipated better outcomes by treating sub-types of breast cancer but they also hoped for a better one-size-fits-all approach, akin to the antiretroviral treatments introduced for HIV and explored in our interview study. We conclude that the promise of targeted treatment for sub-types of disease – variously described as experimental care, personalised, precision, stratified and sub-group medicine – is accompanied by hopes for a single, standard, effective approach.
Rai T, Bruton P, Kall M, et al., 2019, Experience of primary care for people with HIV: a mixed-method analysis, British Journal of General Practice, Vol: 3, ISSN: 0960-1643
BackgroundAdvances in treatment have transformed HIV into a long-term condition (LTC), presenting freshchallenges for health services, HIV specialists and general practitioners (GPs).AimTo explore the experience of people living with HIV (PLHIV) regarding using their GPs.Design and settingA mixed-method analysis using data from two sources: a nationally-representative survey of PLHIVand a qualitative study with London-based PLHIV.MethodsUnivariate logistic regression for quantitative data and Framework analysis for qualitative data.ResultsThe survey had 4,422 participants; the qualitative study included 52 participants. In both studies, GPregistration and HIV status disclosure were high. Similar to general population trends, recent GP usewas associated with poor self-rated health status, co-morbidities, older age and lower socioeconomic status. Two-thirds reported a good experience with GPs; a lower proportion feltcomfortable asking HIV-related questions. Actual or perceived HIV stigma were consistentlyassociated with poor satisfaction. In the interviews, participants with additional LTCs valuedsensitive and consistent support from GPs. Some anticipated, and sometimes experienced, problems relating to HIV status, GPs’ limited experience and time to manage their complex needs. Sometimesthey took their own initiatives to facilitate coordination and communication. For PLHIV, a ‘good’ GPoffered continuity and took time to know and accept them without judgement.ConclusionWe suggest clarification of roles and provision of relevant support to build confidence in GPs andprimary care staff to care for PLHIV. As PLHIV population ages, there is a strong need to developtrusting patient/GP relationships and HIV-friendly GP practices.
Rai T, Bruton P, Day S, et al., 2018, From activism to secrecy: contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014, Health Expectations, Vol: 21, Pages: 1134-1141, ISSN: 1369-6513
Background:Successes in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition. Objective:To explore how the contemporary metanarrative of HIV as a chronic condition is understood by patients and how it varies depending on when they were diagnosed.Design:Qualitative interviews with fifty-two people living with HIV who were diagnosed during different phases in the history of the epidemic. Setting and participantsParticipants were recruited from two HIV clinics in London to include four “HIV generations”: generation 1 were those who had been diagnosed pre-1997 (pre-ART), generation 2 from 1997-2005 (complex ART), generation 3 from 2006-2012 (simpler ART) and generation 4 were diagnosed in the year before the study (2013-2014). Results: Participants in all HIV generations took their medication as prescribed, attended clinic appointments and were well-informed about their immunological biomarkers. While the pre-treatment generation had been engaged in community endeavours such as activism, public education and use of support groups, those more recently diagnosed had little experience of collective activities and their HIV was essentially a private matter, separate from their social identity. These strategies worked for some however those experiencing clinical or social problems related to HIV or wider issues often relied exclusively on their HIV clinic for wider support. Conclusion:The loss of public conversation around HIV, the imperative for patients to take on greater individual responsibility for HIV management and the streamlining of HIV services alongside reductions in ancillary support services may expose some people to suboptimal health outcomes.
Bruton PJ, Rai T, Day S, et al., 2018, Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014, BMJ Open, Vol: 8, ISSN: 2044-6055
Objectives: To describe the experiences of the HIV treatment cascade of diagnosis, engagement with care and initiation of treatment, from the perspective of patients; we explored whether this differed according to the year of their diagnosis, for example whether they had experienced HIV care in the pre-treatment era.Design: Qualitative interview study with framework analysisSetting: Two large HIV adult outpatient clinics in central London. Participants: 52 HIV positive individuals, 41 men, 11 women, purposively sampled to include people who had been diagnosed at different stages in the history of the epidemic classified as four ‘generations’: pre-1996 (pre-ART), 1997 to 2005 (complex ARTs), 2006 to 2012 (simpler ARTs), 2013 onwards (recent diagnoses).Results: Some important differences were identified; for earlier generations, the visible illness and deaths from AIDS made it harder to engage with care following diagnosis. Subsequent decisions about starting treatment were deeply influenced by the fear of severe side-effects from early antiretroviral therapy (ART). However, despite improvements in ART and life expectancy over the epidemic we found a striking similarity across participants’ accounts of the key stages of the care continuum, regardless of when they were diagnosed. Diagnosis was a major traumatic life event for almost everyone, fear of testing positive or having low self-perceived risk affected the timing of testing and diagnosis, engaging with care was facilitated by a flexible approach from services/clinicians and initiating treatment was a major life decision. Conclusion: We found patients’ experiences are influenced by when they were diagnosed, with earliest cohorts facing substantial challenges. However, being diagnosed with HIV and starting treatment continue to be significant life-altering events even in the era of effective, simple treatments. Despite the advances of biomedical treatment services should continue to recogn
AIM AND OBJECTIVES: to understand the purpose, impact and experience of nurse handover from patient and staff perspectives. BACKGROUND: poor communication is increasingly recognised as a major factor in healthcare errors. Handover is a key risk point. Little consensus exists regarding the practice in nursing but the trend is towards bedside handover. Research on patient and staff experiences of handover is limited. DESIGN: a qualitative and observational study on two acute wards in a large urban hospital in the UK. METHODS: interviews conducted with patients and staff and observation of handovers, ward rounds and patient-staff interactions. RESULTS: diverse forms of nurse handover were found, used in combination: office based (whole nursing team), nurse in charge (NIC) to NIC, and bedside. Patients' and nurses' views concurred on the purpose of bedside handover-transference of information about the patient between two nurses-and about the medical ward round, which was seen as a discussion with the patient. Views diverged regarding the purpose and value of office handover. Bedside handover differed in style, content, and place of delivery, often driven by concerns regarding confidentiality and talking over patients, and there were varied views on the benefits of patient involvement in bedside handover. Nurses worked beyond their shift end to complete handover. Communication problems within the clinical team were identified by staff and patients. CONCLUSIONS: while it is important to agree the purpose of handover and develop appropriate structure, content and style, it need not be a uniform process in all clinical areas. Nurse training to deliver bedside handover and patient information on the purpose of handover and the patient's role would be beneficial.
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