RESUMO
BACKGROUND: Older people with frailty are at risk of harm from immobility or isolation, yet data about how COVID-19 lockdowns affected them are limited. Falls and fractures are easily measurable adverse outcomes correlated with frailty. We investigated whether English hospital admission rates for falls and fractures varied from the expected trajectory during the COVID-19 pandemic, and how these varied by frailty status. METHODS: NHS England Hospital Episode Statistics Admitted Patient Care data were analysed for observed versus predicted outcome rates for 24 January 2020 to 31 December 2021. An auto-regressive integrated moving average time-series model was trained using falls and fracture incidence data from 2013 to 2018 and validated using data from 2019. Models included national and age-, sex- and region-stratified forecasts. Outcome measures were hospital admissions for falls, fractures, and falls and fractures combined. Frailty was defined using the Hospital Frailty Risk Score. RESULTS: 144,148,915 pre-pandemic hospital admissions were compared with 42,267,318 admissions after pandemic onset. For the whole population, falls and fracture rates were below predicted for the first period of national lockdown, followed by a rapid return to rates close to predicted. Thereafter, rates followed expected trends. For people living with frailty, however, falls and fractures increased above expected rates during periods of national lockdown and remained elevated throughout the study period. Effects of frailty were independent of age. CONCLUSIONS: People living with frailty experienced increased fall and fracture rates above expected during and following periods of national lockdown. These remained persistently elevated throughout the study period.
Assuntos
COVID-19 , Fraturas Ósseas , Fragilidade , Humanos , Idoso , Fragilidade/diagnóstico , Fragilidade/epidemiologia , Estudos de Coortes , Pandemias , COVID-19/epidemiologia , Idoso Fragilizado , Controle de Doenças Transmissíveis , Fraturas Ósseas/diagnóstico , Fraturas Ósseas/epidemiologia , HospitaisRESUMO
INTRODUCTION: Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from home and/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place-of-care decisions, or the social organisation of those practices. METHODS: As part of a wider study exploring optimal place-of-care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27-31 weeks gestation) cared for in a neonatal unit in the last 12 months. FINDINGS: We highlight parents' labour-intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place-of-care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place-of-care decision-making and other efficiency-focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities. CONCLUSION: Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents' workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families. PATIENT OR PUBLIC CONTRIBUTION: The OPTI-PREM study embedded parents' experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents' experiences-as reported in this paper. The OPTI-PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionals and enabling life-changing research' (https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co-author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation.
Assuntos
Recém-Nascido Prematuro , Entrevistas como Assunto , Poder Familiar , Pais , Pesquisa Qualitativa , Humanos , Pais/psicologia , Feminino , Recém-Nascido , Masculino , Poder Familiar/psicologia , Adulto , Unidades de Terapia Intensiva NeonatalRESUMO
INTRODUCTION: While screening uptake is variable, many individuals feel they 'ought' to participate in screening programmes to aid the detection of conditions amenable to early treatment. Those not taking part in screening are often presented as either hindered by practical or social barriers or personally at fault. Why some people choose not to participate receives less consideration. METHODS: We explored screening nonparticipation by examining the accounts of participants who chose not to participate in screening offered by a national research trial of atrial fibrillation (AF) screening in England (SAFER: Screening for Atrial Fibrillation with ECG to Reduce stroke). AF is a heart arrhythmia that increases in prevalence with age and increases the risk of stroke. Systematic screening for AF is not a nationally adopted programme within the United Kingdom; it provides a unique opportunity to explore screening nonparticipation outside of the norms and values attached to existing population-based screening programmes. We interviewed people aged over 65 (n = 50) who declined an invitation from SAFER and analysed their accounts thematically. RESULTS: Beyond practical reasons for nonparticipation, interviewees challenged the utility of identifying and managing AF earlier. Many questioned the benefits of screening at their age. The trial's presentation of the screening as research made it feel voluntary-something they could legitimately decline. CONCLUSION: Nonparticipants were not resistant to engaging in health-promoting behaviours, uninformed about screening or unsupportive of its potential benefits. Instead, their consideration of the perceived necessity, legitimacy and utility of this screening shaped their decision not to take part. PATIENT OR PUBLIC CONTRIBUTION: The SAFER programme is guided by four patient and carer representatives. The representatives are embedded within the team (e.g., one is a co-applicant, another sits on the programme steering committee) and by participating in regular meetings advise on all aspects of the design, management and delivery of the programme, including engaging with interpreting and disseminating the findings. For the qualitative workstream, we established a supplementary patient and public involvement group with whom we regularly consult about research design questions.
Assuntos
Fibrilação Atrial , Acidente Vascular Cerebral , Humanos , Idoso , Fibrilação Atrial/diagnóstico , Programas de Rastreamento , Reino Unido , Pesquisa QualitativaRESUMO
BACKGROUND: COVID-19 caused disruption to healthcare services globally, resulting in high numbers of hospital admissions and with those discharged often requiring ongoing support. Within the UK, post-discharge services typically developed organically and were shaped over time by local need, funding, and government guidance. Drawing on the Moments of Resilience framework, we explore the development of follow-up services for hospitalised patients by considering the links between resilience at different system levels over time. This study contributes to the resilient healthcare literature by providing empirical evidence of how diverse stakeholders developed and adapted services for patients following hospitalisation with COVID-19 and how action taken at one system level influenced another. METHODS: Qualitative research comprising comparative case studies based on interviews. Across three purposively selected case studies (two in England, one in Wales) a total of 33 semi-structured interviews were conducted with clinical staff, managers and commissioners who had been involved in developing and/or implementing post-hospitalisation follow-up services. The interviews were audio-recorded and professionally transcribed. Analysis was conducted with the aid of NVivo 12. RESULTS: Case studies demonstrated three distinct examples of how healthcare organisations developed and adapted their post-discharge care provision for patients, post-hospitalisation with COVID-19. Initially, the moral distress of witnessing the impact of COVID-19 on patients who were being discharged coupled with local demand gave clinical staff the impetus to take action. Clinical staff and managers worked closely to plan and deliver organisations' responses. Funding availability and other contextual factors influenced situated and immediate responses and structural adaptations to the post-hospitalisation services. As the pandemic evolved, NHS England and the Welsh government provided funding and guidance for systemic adaptations to post-COVID assessment clinics. Over time, adaptations made at the situated, structural, and systemic levels influenced the resilience and sustainability of services. CONCLUSIONS: This paper addresses understudied, yet inherently important, aspects of resilience in healthcare by exploring when and where resilience occurs across the healthcare system and how action taken at one system level influenced another. Comparison across the case studies showed that organisations responded in similar and different ways and on varying timescales to a disruption and national level strategies.
Assuntos
COVID-19 , Humanos , COVID-19/epidemiologia , COVID-19/terapia , Assistência ao Convalescente , Alta do Paciente , Atenção à Saúde , Instalações de SaúdeRESUMO
The organisation of neonatal units into geographically-based networks that offer different levels of care is intended to ensure babies receive the care they need via transfers between different units. In this article, we explore the significant organisational work required in practice to accomplish such transfers. Conducted within a wider study of optimal place of care for babies born between 27 and 31 weeks' gestation, we draw on ethnographic work exploring the accomplishment of transfers in this complex care context. We undertook fieldwork in six neonatal units across two networks in England, representing 280 hours of observation and formal interviews with 15 health-care professionals. Drawing on Strauss et al.'s concept of the social organisation of medicine and Allen's concept of 'organising work', we identify three distinct forms of such work central to the successful accomplishment of a neonatal transfer: (1) 'matchmaking', to identify a suitable transfer location; (2) 'transfer articulation', to successfully effect the planned transfer; and (3) 'parent engagement', to support parents through the transfer process. Our findings build on and extend Strauss et al. and Allen's work by both highlighting the different forms of 'organising work' undertaken in this clinical context and the distribution of such work across different professional groups.
Assuntos
Pais , Parto , Recém-Nascido , Lactente , Gravidez , Feminino , Humanos , Idade Gestacional , InglaterraRESUMO
BACKGROUND: care home staff play a crucial role in managing residents' health and responding to deteriorations. When deciding whether to transfer a resident to hospital, a careful consideration of the potential benefits and risks is required. Previous studies have identified factors that influence staff decision-making, yet few have moved beyond description to produce a conceptual model of the decision-making process. OBJECTIVES: to develop a conceptual model to describe care home staff's decision-making when faced with a resident who potentially requires a transfer to the hospital. METHODS: data collection occurred in England between May 2018 and November 2019, consisting of 28 semi-structured interviews with 30 members of care home staff across six care home sites and 113 hours of ethnographic observations, documentary analysis and informal conversations (with staff, residents, visiting families, friends and healthcare professionals) at three of these sites. RESULTS: a conceptual model of care home staff's decision-making is presented. Except in situations that staff perceived to be urgent enough to require an immediate transfer, resident transfers tended to occur following a series of escalations. Care home staff made complex decisions in which they sought to balance a number of potential benefits and risks to: residents; staff (as decision-makers); social relationships; care home organisations and wider health and social care services. CONCLUSIONS: during transfer decisions, care home staff make complex decisions in which they weigh up several forms of risk. The model presented offers a theoretical basis for interventions to support deteriorating care home residents and the staff responsible for their care.
Assuntos
Hospitais , Casas de Saúde , Antropologia Cultural , Inglaterra , Pessoal de Saúde , HumanosRESUMO
BACKGROUND: Advance care planning has been identified as one of few modifiable factors that could reduce hospital transfers from care homes. Several types of documents may be used by patients and clinicians to record these plans. However, little is known about how plans are perceived and used by care home staff at the time of deterioration. AIM: To describe care home staff experiences and perceptions of using written plans during in-the-moment decision-making about potential resident hospital transfers. DESIGN: Qualitative semi-structured interviews analysed using the Straussian approach to grounded theory. SETTING/PARTICIPANTS: Thirty staff across six care homes (with and without nursing) in the East and West Midlands of England. RESULTS: Staff preferred (in principle) to keep deteriorating residents in the care home but feared that doing so could lead to negative repercussions for them as individuals, especially when there was perceived discordance with family carers' wishes. They felt that clinicians should be responsible for these plans but were happy to take a supporting role. At the time of deterioration, written plans legitimised the decision to care for the resident within the home; however, staff were wary of interpreting broad statements and wanted plans to be detailed, specific, unambiguous, technically 'correct', understood by families and regularly updated. CONCLUSIONS: Written plans provide reassurance for care home staff, reducing concerns about personal and professional risk. However, care home staff have limited discretion to interpret plans and transfers may occur if plans are not specific enough for care home staff to use confidently.
Assuntos
Planejamento Antecipado de Cuidados , Serviços Médicos de Emergência , Teoria Fundamentada , Humanos , Casas de Saúde , Pesquisa QualitativaRESUMO
BACKGROUND: Cardiovascular disease is a major contributor to poor health in the UK and the leading cause of death in England. Peripheral arterial disease and high blood pressure are conditions that identify individuals at high cardiovascular disease risk, likely to benefit from cardiovascular risk management. Both conditions remain considerably underdiagnosed and untreated. The National Health Service abdominal aortic aneurysm (AAA) screening programmes represent an opportunity to screen for these conditions with potentially minimal additional effort or cost. We explored AAA screening programme staff views on the proposed introduction of such additional screening within AAA screening. METHODS: Nine focus groups and seven follow-on interviews were undertaken with 38 AAA screening staff. Our study methods were oriented broadly towards a grounded theory methodology, and data were analysed using thematic analysis. RESULTS: Three themes were identified: (i) 'Perceptions of patient experience and health-related outcomes', (ii) 'Opportunities and challenges for programme staff', and (iii) 'Maintaining and improving programme standards'. Staff talked about the high uptake of AAA screening, staff experience and skills in their role, and the programme's high quality standards as both opportunities and potential challenges linked to the proposed additions to AAA screening. While positive about the potential to improve patients' health outcomes, participants had questions about the practicalities of incorporating additional procedures within their time- and resource-constrained context, and how this may reconfigure work processes, roles and relationships. CONCLUSIONS: The proposed additions to the programme require taking staff's views into account. Key areas that need to be addressed relate to ensuring follow-up support for patients, clarity around staff responsibilities, and availability of sufficient resources for the programme.
Assuntos
Aneurisma da Aorta Abdominal , Doenças Cardiovasculares , Aneurisma da Aorta Abdominal/diagnóstico , Aneurisma da Aorta Abdominal/prevenção & controle , Humanos , Pesquisa Qualitativa , Medicina Estatal , Reino UnidoRESUMO
Overdiagnosis and overtreatment are increasingly discussed as a significant problem in contemporary healthcare but are yet to receive any significant sociological attention, over and above that which is arguably transferable from the medicalisation literature. Overdiagnosis and overtreatment are often constructed as problems best addressed by educating patients and clinicians, and improving the relationships between them. The emergence of tools seeking to support decision-making and to facilitate patients' asking questions about whether interventions are really necessary supports this conceptualisation. This article questions whether significant traction on overdiagnosis and overtreatment is possible through these means alone, arguing that even when professionals and patients may wish to do less rather than more, the system within which care is delivered and received can make this challenging to achieve. Drawing on Scott's (Sociology, 2018, 52, 3) 'sociology of nothing', the article demonstrates that a sociological perspective on overdiagnosis and overtreatment recasts them as issues that must be understood as a consequence of the organisational, financial and cultural attributes of the system, not just individual interactions, and advances a research agenda for the area.
Assuntos
Uso Excessivo dos Serviços de Saúde , Medicalização , HumanosRESUMO
In this collection we revisit the enduring phenomenon of uncertainty in health care, and demonstrate how it still offers coherence and significance as an analytic concept. Through empirical studies of contemporary examples of health care related uncertainties and their management, our collection explores the different ways in which uncertainty may be articulated, enacted and experienced. The papers address a diverse range of healthcare contexts - Alzheimer's disease, neonatal surgery, cardiovascular disease prevention, cancer, addiction (use of alcohol and other drugs during pregnancy), mental health/disorders and medical education - and many tackle issues of contemporary relevance, such as an ageing population, and novel medical interventions and their sequelae. These empirical papers are complemented by a further theoretical contribution, which considers the role of 'implicit normativity' in masking and containing potential ethical uncertainty. By mapping themes across the collection, in this introduction we present a number of core analytical strands: (1) conceptualising uncertainty; (2) intersections of uncertainty with aspects of care; (3) managing uncertainty; and (4) structural constraints, economic austerity and uncertainty work. We reflect on the methodological and theoretical stances used to think sociologically about uncertainty in health care, and the strengths, silences and gaps we observe in the collection. We conclude by considering the implications of the insights gained for 'synthesising certainty' in practice and for future research in this area.
Assuntos
Atenção à Saúde , Sociologia , Humanos , Recém-Nascido , IncertezaRESUMO
When a baby is diagnosed with a condition needing surgery they, and their family, start down an uncertain and unknown path. Living with uncertainty underpins every stage of the journey from hospital to home. These journeys span the highly technical to the mundane. They are likely to involve, at crucial points, medicalised and specialised neonatal and surgical care in paediatric centres of excellence where parents are mere spectators. Yet ultimately parents are able to take their baby home, confident experts in their daily care. Drawing on narrative interviews with 42 UK parents whose baby underwent neonatal surgery, this paper explores how parents navigate this uncertainty through acquiring experiential and lay knowledge and developing expertise in their baby's condition and treatment options. These conditions are rare. Building on sociological understandings of the work of chronic illness, as well as more recent work on newborn screening, sharing information online and examinations of experiential knowledge, we explore lay knowledge and expertise as it intersects with biomedical and surgical frontiers. We demonstrate how the development of expertise is an emergent, three-stage process supported by both biomedical and lay knowledge and elucidate this process of knowledge-building as a scaffold through which to manage uncertainty.
Assuntos
Pais , Criança , Humanos , IncertezaRESUMO
In this article, we draw on an institutional ethnographic (IE) study of cardiovascular disease prevention in general practice, exploring the work of healthcare professionals who introduce a discussion of risk and preventative medications into consultations with patients. Our aim is to explicate, using IE's theoretical ontology and analytical tools, how troubling patient experiences in this clinical context are coordinated institutionally. We focus our attention on the social organisation of healthcare professionals' knowledge and front-line practices, highlighting the textual processes through which they overrule patients' concerns and uncertainties about taking preventative medication, such that some patients feel unable to openly discuss their health needs in preventative consultations. We show how healthcare professionals activate knowledge of 'evidence-based risk reduction' to frame patients' queries as 'barriers' to be overcome. Our analysis points not to deficiencies of healthcare professionals who lack the expertise or inclination to adequately 'share decisions' with patients, but to the ways in which their work is institutionally orientated towards performance measures which will demonstrate to local and national policymakers that they are tackling the 'burden of (cardiovascular) disease'.
Assuntos
Atenção à Saúde , Pessoal de Saúde , Antropologia Cultural , Humanos , Organizações , IncertezaRESUMO
INTRODUCTION AND HYPOTHESIS: The objectives were to explore the views of women with recurrent stress incontinence (SUI) with regard to treatment preferences and the acceptability of randomisation to a future trial, and to survey the views of UK specialists on treatment preferences and equipoise regarding different treatment alternatives. METHODS: An online survey of the British Society of Urogynaecology (BSUG) and British Society of Urological Surgeons (BAUS) was carried out. Qualitative semi-structured interviews with a purposive sample of surgeons and women suffering from recurrent SUI from three UK centres. RESULTS: Two hundred fifty-six survey replies were received (176 gynaecology; 80 urology). Comparing the treatments offered, urogynaecologists were more likely to offer pelvic floor exercises (p < 0.05), and repeat midurethral tape (MUT) (p < 0.001). From the Surgical Equipoise Scale (SES) responses, "no preference" was rarely the commonest response. Marked differences for several options existed; midurethral tape dominated responses whenever it appeared. Twenty-one clinicians were interviewed. Treatment preferences were complex, influenced by a range of factors (reason for failure, patient comorbidity, investigations, personal experience, training). A future trial was regarded as important. Eleven women were interviewed. Most had considered more than one option, but felt that decision-making was more a process of elimination rather than a positive process. Randomisation to a study was regarded as unacceptable by most. CONCLUSIONS: No consensus exists among surgeons about preferred treatment options for recurrent SUI, and personal experience and training dominate decision-making. For patients, choices were usually based on an elimination of options, including that of a repeat failed procedure. This contrasts with surgeons, who mostly preferred a repeat MUT above other options. Any future comparative study will be challenging.
Assuntos
Tomada de Decisão Clínica , Tomada de Decisões , Preferência do Paciente/psicologia , Incontinência Urinária por Estresse/psicologia , Incontinência Urinária por Estresse/cirurgia , Urologistas/psicologia , Adulto , Feminino , Humanos , Entrevistas como Assunto , Reoperação/psicologia , Slings Suburetrais , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To explore parental decision making following diagnosis of a severe congenital anomaly, and implications for healthcare encounters. DESIGN: Qualitative semi-structured interviews with 38 parents-to-be were collated and triangulated with data generated from consultation recordings. ANALYSIS: Data were analysed using a constant comparative-based approach. SETTING: Recruitment was undertaken across four fetal medicine sites in two tertiary referral trusts. PARTICIPANTS: Parents-to-be whose pregnancy was suspected or diagnosed as being affected by a severe congenital anomaly. This sample was purposive to include known factors affecting the decision to terminate or continue the affected pregnancy. FINDINGS: In trying to make a decision about how to proceed with their pregnancy, parents-to-be typically had to work hard to negotiate multiple uncertainties around the diagnosis and prognosis of the suspected anomaly. This was influenced by parents' capacity to cope with uncertainty and the way in which uncertainty was managed by the clinical team. This negotiation of uncertainty was enacted within a fluid, nonlinear three-phase process: "information seeking," reflecting the way parents-to-be face the uncertainty associated with a fetal diagnosis and associated prognosis; "implications," where consideration is given to future consequences of the decision; and "decision making," which reflects the way in which the decision is made (head- or heart-led). Spectrums of responses were apparent within each phase. CONCLUSIONS: This study provides important insights into how parents-to-be make decisions following diagnosis or suspicion of a severe congenital anomaly. The impact of these on healthcare encounters is discussed, alongside recommendations for clinical practice.
Assuntos
Anormalidades Congênitas/diagnóstico , Tomada de Decisões , Pais/psicologia , Diagnóstico Pré-Natal , Incerteza , Aborto Induzido , Adulto , Feminino , Humanos , Masculino , GravidezRESUMO
BACKGROUND: Context is important in implementation-we know that what works in one setting may not work in the same way elsewhere. Primary care has been described as a unique context both in relation to the care delivered and efforts to carry out research and implementation of new evidence. OBJECTIVE: To explore some of the distinctive features of the primary care environment that may influence implementation. METHODS: We conducted an ethnographic study involving observations, interviews and documentary analysis of the ENABLE-CKD project, which involved general practices implementing a chronic kidney disease care bundle and offering self-management support tools to patients. Analysis was based on the constant comparative method. RESULTS: Four elements of the primary care environment emerged as important influences on the extent to which implementation was successful. First, the nature of delivering care in this setting meant that prioritizing one condition over others was problematic. Second, the lack of alignment with financial and other incentives affected engagement. Third, the project team lacked mechanisms through which engagement could be mandated. Fourth, working relationships within practices impacted on engagement. CONCLUSIONS: Those seeking to implement interventions in primary care need to consider the particular context if they are to secure successful implementation. We suggest that there are particular kinds of interventions, which may be best suited to the primary care context.
Assuntos
Atenção Primária à Saúde/normas , Insuficiência Renal Crônica/terapia , Engajamento no Trabalho , Antropologia Cultural , Medicina Geral , Prioridades em Saúde/organização & administração , Humanos , Entrevistas como Assunto , Atenção Primária à Saúde/organização & administração , Pesquisa Qualitativa , Insuficiência Renal Crônica/economia , Reino UnidoRESUMO
BACKGROUND: Trial participation decisions are often influenced by expectations of potential benefit. Attention has focused on trial participation as a means of securing something seen as desirable, such as experimental treatment. In contrast, we consider a case in which one trial arm involved receiving less than usual care. We explore how this influenced participants' decisions to participate. METHODS: Semi-structured interviews with 29 women participating in a pilot trial comparing invasive urodynamic testing (typically normal care) to basic clinical assessment with non-invasive tests, prior to surgical treatment for stress urinary incontinence. Analysis was based on the constant comparative method. RESULTS: Invasive tests were something many were aware of and worried about. Participants understood that trial participation meant they might avoid having these tests, and for about one-third, this was the primary factor motivating participation. A further third mentioned they were not looking forward to tests (if allocated to them) or were lucky to have missed them (if allocated to basic clinical assessment). None of the women appeared to have discussed their desire to avoid having invasive tests with their clinicians. CONCLUSIONS: In contrast to cases in which trial participation is motivated by the wish to secure an intervention not otherwise available, this study reports the opposite - trial participation as an opportunity to avoid having something regarded as undesirable. The option to decline a particular intervention should always be available, and care must be taken to ensure that potential participants are aware that trial participation is not the only possible means of avoidance.
Assuntos
Atitude Frente a Saúde , Ensaios Clínicos como Assunto , Tomada de Decisões , Aceitação pelo Paciente de Cuidados de Saúde , Incontinência Urinária por Estresse/diagnóstico , Urodinâmica , Adulto , Idoso , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Projetos Piloto , Pesquisa Qualitativa , Incontinência Urinária por Estresse/fisiopatologia , Incontinência Urinária por Estresse/terapiaRESUMO
BACKGROUND: Increasingly, the sharing of study results with participants is advocated as an element of good research practice. Yet little is known about how receiving the results of trials may impact on participants' perceptions of their original decision to consent. OBJECTIVE: We explored participants' views of their decision to consent to a clinical trial after they received results showing adverse outcomes in some arms of the trial. METHOD: Semi-structured interviews were conducted with a purposive sample of 38 women in the UK who participated in a trial of antibiotics in pregnancy. All had received results from a follow-up study that reported increased risk of adverse outcomes for children of participants in some of the trial intervention arms. Data analysis was based on the constant comparative method. RESULTS: Participants' original decisions to consent to the trial had been based on hope of personal benefit and assumptions of safety. On receiving the results, most made sense of their experience in ways that enabled them to remain content with their decision to take part. But for some, the results provoked recognition that their original expectations might have been mistaken or that they had not understood the implications of their decision to participate. These participants experienced guilt, a sense of betrayal by the maternity staff and researchers involved in the trial, and damage to trust. CONCLUSIONS: Sharing of study results is not a wholly benign practice, and requires careful development of suitable approaches for further evaluation before widespread adoption.
Assuntos
Ensaios Clínicos como Assunto , Tomada de Decisões , Revelação , Consentimento Livre e Esclarecido , Confiança , Adulto , Feminino , Seguimentos , Humanos , Consentimento Livre e Esclarecido/psicologia , Entrevistas como Assunto , Pessoa de Meia-Idade , Gravidez , Pesquisa QualitativaRESUMO
BACKGROUND: Greater implementation of evidence-based practice for children and adolescents is a current emphasis in the mental health field; however, there is a need to understand how best to disseminate these interventions and convince community clinicians to use them. METHOD: A sample of 255 clinicians reported on the likelihood that they would use an intervention given various types of evidence. RESULTS: Case studies and clinical trials with an active or placebo control group scored as the most preferred types of evidence; however, more positive attitudes toward evidence-based practice predicted preferences for clinical trials, but were not related to case studies. CONCLUSION: Implementation of evidence-based practice may be improved by greater dissemination of case studies demonstrating the use of these interventions in 'real world' settings. In addition, fostering a greater appreciation of research-derived interventions among clinicians appears necessary.
RESUMO
BACKGROUND: Reducing avoidable stillbirth is a global priority. The stillbirth rate in England compares unfavourably to that of some other high-income countries. Poorly-managed episodes of altered fetal movement have been highlighted as a key contributor to avoidable stillbirth, and strategies introduced in England in 2016 to reduce perinatal mortality included recommendations for the management of reduced fetal movement. Despite a downward trend in stillbirth rates across the UK, the effects of policies promoting awareness of fetal movement remain uncertain. OBJECTIVE: To provide in-depth knowledge of how practice and clinical guidance relating to altered fetal movement are perceived, enacted and experienced by midwives and obstetricians, and explore the relationship between recommended fetal movement care and actual fetal movement care. DESIGN: A focused ethnographic approach comprising over 180â¯h of observation, 15 interviews, and document analysis was used to explore practice at two contrasting UK maternity units. SETTINGS: Antenatal services at two UK maternity units, one in the Midlands and one in the North of England. PARTICIPANTS: Thirty-six midwives, obstetricians and sonographers and 40 pregnant women participated in the study across 52 observed care episodes and relevant unit activity. Twelve midwives and three obstetricians additionally participated in formal semi-structured interviews. METHODS: Fieldnotes, interview transcripts, policy documents, maternity notes and clinical guidelines were analysed using a modified constant comparison method to identify important themes. RESULTS: fetal movement practice was mostly consistent and in line with guideline recommendations. Notwithstanding, most midwives and obstetricians had concerns about this area of care, including challenges in diagnosis, conflicting evidence about activity, heightened maternal anxiety, and high rates of monitoring and intervention in otherwise low-risk pregnancies. To address these issues, midwives spent considerable time reassuring women through information and regular monitoring, and coaching them to perceive fetal movement more accurately. CONCLUSIONS: Practice relating to altered fetal movement might be more uniform than in the past. However, a heightened focus on fetal movement is associated by some midwives and obstetricians with potential harms, including increased anxiety in pregnancy, and high rates of monitoring and intervention in pregnancies where there are no 'objective concerns'. Challenges in diagnosing a significant change in fetal movement with accuracy might mean that interventions and resources are not being directed towards those pregnancies most at risk. More research is needed to determine how healthcare professionals can engage in conversations about fetal movement and stillbirth to support safe outcomes and positive experiences in pregnancy and birth. REGISTRATION: Not registered. TWEETABLE ABSTRACT: Midwives and obstetricians take #reducedfetalmovement seriously but worry this 'unreliable' symptom increases anxiety, monitoring and intervention in many 'low risk' pregnancies.