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We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
Using qualitative evaluation components to help understand context: case study of a family planning intervention with female community health volunteers (FCHVs) in Nepal.
BackgroundEvaluations of health interventions are increasingly concerned with measuring or accounting for 'context'. How to do this is still subject to debate and testing, and is particularly important in the case of family planning where outcomes will inevitably be influenced by contextual factors as well as any intervention effects. We conducted an evaluation of an intervention where female community health volunteers (FCHVs) in Nepal were trained to provide better interpersonal communication on family planning. We included a context-orientated qualitative component to the evaluation. Here, we discuss the evaluation findings, specifically focusing on what was added by attending to the context. We explore and illustrate important dimensions of context that may also be relevant in future evaluation work.MethodsThe evaluation used a mixed methods approach, with a qualitative component which included in-depth interviews with women of reproductive age, FCHVs, and family planning service providers. We conducted iterative, thematic analysis.ResultsThe life-history fertility and contraception narratives generated from the in-depth interviews contextualised the intervention, yielding nuanced data on contraceptive choices, needs, and areas for future action. For instance, it highlighted how women generally knew about effective contraceptive methods and were willing to use them: information was not a major barrier. Barriers instead included reports of providers refusing service when women were not in the fifth day of their menstrual cycle when this was unnecessary. Privacy and secrecy were important to some women, and risked being undermined by information sharing between FCHVs and health services. The qualitative component also revealed unanticipated positive effects of our own evaluation strategies: using referral slips seemed to make it easier for women to access contraception.ConclusionsLife history narratives collected via in-depth interviews helped us understand pathways from intervention to effect from the user point of view without narrowly focusing only on the intervention, highlighting possible areas for action that would otherwise have been missed. By attending to context in a nuanced way in evaluations, we can build a body of evidence that not only informs future interventions within that context, but also builds better knowledge of contextual factors likely to be important elsewhere.
Methods to measure effects of social accountability interventions in reproductive, maternal, newborn, child, and adolescent health programs: systematic review and critique.
BackgroundThere is no agreed way to measure the effects of social accountability interventions. Studies to examine whether and how social accountability and collective action processes contribute to better health and healthcare services are underway in different areas of health, and health effects are captured using a range of different research designs.ObjectivesThe objective of our review is to help inform evaluation efforts by identifying, summarizing, and critically appraising study designs used to assess and measure social accountability interventions' effects on health, including data collection methods and outcome measures. Specifically, we consider the designs used to assess social accountability interventions for reproductive, maternal, newborn, child, and adolescent health (RMNCAH).Data sourcesData were obtained from the Cochrane Library, EMBASE, MEDLINE, SCOPUS, and Social Policy & Practice databases.Eligibility criteriaWe included papers published on or after 1 January 2009 that described an evaluation of the effects of a social accountability intervention on RMNCAH.ResultsTwenty-two papers met our inclusion criteria. Methods for assessing or reporting health effects of social accountability interventions varied widely and included longitudinal, ethnographic, and experimental designs. Surprisingly, given the topic area, there were no studies that took an explicit systems-orientated approach. Data collection methods ranged from quantitative scorecard data through to in-depth interviews and observations. Analysis of how interventions achieved their effects relied on qualitative data, whereas quantitative data often raised rather than answered questions, and/or seemed likely to be poor quality. Few studies reported on negative effects or harms; studies did not always draw on any particular theoretical framework. None of the studies where there appeared to be financial dependencies between the evaluators and the intervention implementation teams reflected on whether or how these dependencies might have affected the evaluation. The interventions evaluated in the included studies fell into the following categories: aid chain partnership, social audit, community-based monitoring, community-linked maternal death review, community mobilization for improved health, community reporting hotline, evidence for action, report cards, scorecards, and strengthening health communities.ConclusionsA wide range of methods are currently being used to attempt to evaluate effects of social accountability interventions. The wider context of interventions including the historical or social context is important, as shown in the few studies to consider these dimensions. While many studies collect useful qualitative data that help illuminate how and whether interventions work, the data and analysis are often limited in scope with little attention to the wider context. Future studies taking into account broader sociopolitical dimensions are likely to help illuminate processes of accountability and inform questions of transferability of interventions. The review protocol was registered with PROSPERO (registration # CRD42018108252).
Understanding the health-care experiences of people with sickle cell disorder transitioning from paediatric to adult services: This Sickle Cell Life, a longitudinal qualitative study
BackgroundTransitions from paediatric to adult health-care services cause problems worldwide, particularly for young people with long-term conditions. Sickle cell disorder brings particular challenges needing urgent action.ObjectivesUnderstand health-care transitions of young people with sickle cell disorder and how these interact with broader transitions to adulthood to improve services and support.MethodsWe used a longitudinal design in two English cities. Data collection included 80 qualitative interviews with young people (aged 13–21 years) with sickle cell disorder. We conducted 27 one-off interviews and 53 repeat interviews (i.e. interviews conducted two or three times over 18 months) with 48 participants (30 females and 18 males). We additionally interviewed 10 sickle cell disease specialist health-care providers. We used an inductive approach to analysis and co-produced the study with patients and carers.ResultsKey challenges relate to young people’s voices being ignored. Participants reported that their knowledge of sickle cell disorder and their own needs are disregarded in hospital settings, in school and by peers. Outside specialist services, health-care staff refuse to recognise patient expertise, reducing patients’ say in decisions about their own care, particularly during unplanned care in accident and emergency departments and on general hospital wards. Participants told us that in transitioning to adult care they came to realise that sickle cell disorder is poorly understood by non-specialist health-care providers. As a result, participants said that they lack trust in staff’s ability to treat them correctly and that they try to avoid hospital. Participants reported that they try to manage painful episodes at home, knowing that this is risky. Participants described engaging in social silencing (i.e. reluctance to talk about and disclose their condition for fear that others will not listen or will not understand) outside hospital; for instance, they would avoid mentioning cell sickle disorder to explain fatigue. Their self-management tactics include internalising their illness experiences, for instance by concealing pain to protect others from worrying. Participants find that working to stay healthy is difficult to reconcile with developing identities to meet adult life goals. Participants have to engage in relentless self-disciplining when trying to achieve educational goals, yet working hard is incompatible with being a ‘good adult patient’ because it can be risky for health. Participants reported that they struggle to reconcile these conflicting demands.LimitationsOur findings are derived from interviews with a group of young people in England and reflect what they told us (influenced by how they perceived us). We do not claim to represent all young people with sickle cell disorder.ConclusionsOur findings reveal poor care for young people with sickle cell disorder outside specialist services. To improve this, it is vital to engage with young people as experts in their own condition, recognise the legitimacy of their voices and train non-specialist hospital staff in sickle cell disorder care. Young people must be supported both in and outside health-care settings to develop identities that can help them to achieve life goals.Future workFuture work should include research into the understanding and perceptions of sickle cell disease among non-specialist health-care staff to inform future training. Whole-school interventions should be developed and evaluated to increase sickle cell disorder awareness.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 44. See the NIHR Journals Library website for further project information.
Interpregnancy interval and risk of perinatal death: a systematic review and meta-analysis.
BackgroundInterpregnancy interval (IPI) <6 months is a potentially modifiable risk factor for adverse perinatal health outcomes.ObjectiveThis systematic review evaluated the international literature on the risk of perinatal death associated with IPI.Search strategyTwo independent reviewers screened titles and abstracts identified in MEDLINE, EMBASE and Scopus from inception to 4 April 2019 (Prospero Registration #CRD42018092792).Selection criteriaStudies were included if they provided a description of IPI measurement and perinatal death, including stillbirth and neonatal death.Data collection and analysisA narrative review was performed for all included studies. Random effects meta-analysis was used to compare unadjusted odds of perinatal death associated with IPI <6 months and IPI ≥6 months. Analyses were performed by outcome of the preceding pregnancy and study location.Main resultsOf the 624 unique articles identified, 26 met the inclusion criteria. The pooled unadjusted odds ratio of perinatal death for IPI <6 months was 1.34 (95% CI 1.17-1.53) following a previous live birth, 0.85 (95% CI 0.73-0.99) following a previous miscarriage and 1.07 (95% CI 0.84-1.36) following a previous stillbirth compared with IPI ≥6 months. However, few high-income country studies reported an association after adjustment. Fewer studies evaluated the impact of long IPI on perinatal death and what evidence was available showed mixed results.ConclusionsResults suggest a possible association between short IPI and risk of perinatal death following a live birth, particularly in low- to middle-income countries.Tweetable abstractShort IPI <6 months after a live birth was associated with greater risk of perinatal death than IPI ≥6 months.
What and how: doing good research with young people, digital intimacies, and relationships and sex education.
As part of a project funded by the Wellcome Trust, we held a one-day symposium, bringing together researchers, practitioners, and policymakers, to discuss priorities for research on relationships and sex education (RSE) in a world where young people increasingly live, experience, and augment their relationships (whether sexual or not) within digital spaces. The introduction of statutory RSE in schools in England highlights the need to focus on improving understandings of young people and digital intimacies for its own sake, and to inform the development of learning resources. We call for more research that puts young people at its centre; foregrounds inclusivity; and allows a nuanced discussion of pleasures, harms, risks, and rewards, which can be used by those working with young people and those developing policy. Generating such research is likely to be facilitated by participation, collaboration, and communication with beneficiaries, between disciplines and across sectors. Taking such an approach, academic researchers, practitioners, and policymakers agree that we need a better understanding of RSE's place in lifelong learning, which seeks to understand the needs of particular groups, is concerned with non-sexual relationships, and does not see digital intimacies as disconnected from offline everyday 'reality'.
Applying a complex adaptive systems approach to the evaluation of a school-based intervention for intimate partner violence prevention in Mexico.
Despite calls for evaluation practice to take a complex systems approach, there are few examples of how to incorporate complexity into real-life evaluations. This article presents the case for using a complex systems approach to evaluate a school-based intimate partner violence-prevention intervention. We conducted a post hoc analysis of qualitative evaluation data to examine the intervention as a potential system disruptor. We analysed data in relation to complexity concepts particularly relevant to schools: 'diverse and dynamic agents', 'interaction', 'unpredictability', 'emergence' and 'context dependency'. The data-two focus groups with facilitators and 33 repeat interviews with 14-17-year-old students-came from an evaluation of a comprehensive sexuality education intervention in Mexico City, which serves as a case study for this analysis. The findings demonstrate an application of complex adaptive systems concepts to qualitative evaluation data. We provide examples of how this approach can shed light on the ways in which interpersonal interactions, group dynamics, the core messages of the course and context influenced the implementation and outcomes of this intervention. This gender-transformative intervention appeared to disrupt pervasive gender norms and reshape beliefs about how to engage in relationships. An intervention comprises multiple dynamic and interacting elements, all of which are unlikely to be consistent across implementation settings. Applying complexity concepts to our analysis added value by helping reframe implementation-related data to focus on how the 'social' aspects of complexity influenced the intervention. Without examining both individual and group processes, evaluations may miss key insights about how the intervention generates change, for whom, and how it interacts with its context. A social complex adaptive systems approach is well-suited to the evaluation of gender-transformative interventions and can help identify how such interventions disrupt the complex social systems in which they are implemented to address intractable societal problems.
Transitions to adulthood: self-governance and disciplining in the making of patient citizens.
Young people develop new behaviours and redefine their identities during health transitions when they move from paediatric to adult healthcare environments. Their identities help to guide their health-related actions in response to life changes. Young people's health is increasingly recognised as important, yet we lack understanding of how health transitions shape identities and how they relate to other transitions to adulthood. We conducted a longitudinal interview study with young people with sickle cell disease to explore how young people define new identities as they transition to adulthood. We show how 'disciplining at a distance' via healthcare self-management discourses and neoliberal norms governing adolescence play out in the tensions participants encounter when they are crafting new identities. Health transitions involve struggles to negotiate competing demands for self-discipline. It is crucial to create enabling spaces for young people to protect their health while still developing identities that help them achieve life goals.
Not being heard: barriers to high quality unplanned hospital care during young people's transition to adult services - evidence from 'this sickle cell life' research.
BackgroundYoung people's experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition.MethodsWe conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016-2017 with young people with SCD aged 13-21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2-3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis.ResultsParticipants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care.ConclusionsOur study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people's voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.
Spaces for Citizen Involvement in Healthcare: An Ethnographic Study
This ethnographic study examines how participatory spaces and citizenship are co-constituted in participatory healthcare improvement efforts. We propose a theoretical framework for participatory citizenship in which acts of citizenship in healthcare are understood in terms of the spaces they are in. Participatory spaces consist of material, temporal and social dimensions that constrain citizens’ actions. Participants draw on external resources to try to make participatory spaces more productive and collaborative, to connect and expand them. We identify three classes of tactics they use to do this: ‘plotting’, ‘transient combination’ and ‘interconnecting’. All tactics help participants assemble to a greater or lesser extent a less fragmented participatory landscape with more potential for positive impact on healthcare. Participants’ acts of citizenship both shape and are shaped by participatory spaces. To understand participatory citizenship, we should take spatiality into account, and track the ongoing spatial negotiations and productions through which people can improve healthcare.
Introduction of point-of-care blood testing in early intervention in psychosis services: effects on physical health screening.
BACKGROUND: There is a significant mortality gap between the general population and people with psychosis. Completion rates of regular physical health assessments for cardiovascular risk in this group are suboptimal. Point-of-care testing (POCT) for diabetes and hyperlipidaemia - providing an immediate result from a finger-prick - could improve these rates. AIMS: To evaluate the impact on patient-clinician encounters and on physical health check completion rates of implementing POCT for cardiovascular risk markers in early intervention in psychosis (EIP) services in South East England. METHOD: A mixed-methods, real-world evaluation study was performed, with 40 POCT machines introduced across EIP teams in all eight mental health trusts in South East England from March to May 2021. Clinician training and support was provided. Numbers of completed physical health checks, HbA1c and lipid panel blood tests completed 6 and 12 months before and 6 months after introduction of POCT were collected for individual patients. Data were compared with those from the South West region, which acted as a control. Clinician questionnaires were administered at 2 and 8 months, capturing device usability and impacts on patient interactions. RESULTS: Post-POCT, South East England saw significant increases in HbA1c testing (odds ratio 2.02, 95% CI 1.17-3.49), lipid testing (odds ratio 2.38, 95% CI 1.43-3.97) and total completed health checks (odds ratio 3.61, 95% CI 1.94-7.94). These increases were not seen in the South West. Questionnaires revealed improved patient engagement, clinician empowerment and patients' preference for POCT over traditional blood tests. CONCLUSIONS: POCT is associated with improvements in the completion and quality of physical health checks, and thus could be a tool to enhance holistic care for individuals with psychosis.
Bridging assessment and treatment for repeat suicidality in prisons: Development and validation of a risk model
Background Suicidal thoughts and behaviours are common in people in prison and associated with poor health outcomes, including suicide, injury and repeat self-harm. Objective To develop and validate a model to stratify risk of repeat suicidality up to 3 months in people in prison. Methods In seven English prisons, we identified 754 people aged over 17 who had been placed on a suicide risk management plan after a self-harm episode or elevated risk. We developed a multivariable model to stratify risk of repeat suicidality at 3 months using routinely collected sociodemographic, clinical and prison-related factors, which were tested using Cox proportional HR models. In a prospective validation sample of 390 people from 13 prisons, we tested this model to assess risk of repeat suicidality at 3 months across a range of performance measures. Findings Of the overall sample of 1144 people in prison (n=966 men or 84%, mean age 33 years), 22% had the outcome of repeat suicidality over 3 months. The final risk model consisted of nine factors, including sex, calendar age and features of recent suicidal behaviour. Calibration and discrimination were similar in both development and validation samples, with O:E ratio=1.09 (95% CI 0.88 to 1.35) and c-statistic=0.66 (95% CI 0.60 to 0.72) in external validation. At a 25% cut-off, sensitivity was 58% (50 to 66) and specificity was 72% (68 to 75) in external validation. The tool (Risk Assessment for people in Prison at risk of Self-harm and Suicide, RAPSS) is available as an online risk calculator at https://oxrisk.com/rapsstrial/. Interpretation A novel assessment approach for repeat suicidality can provide an evidence-based approach to stratify risk and better allocate resources.
Urgent Implementation of Point-of-Care Testing for Group A Streptococcal Infection in a UK Children’s Emergency Department
Objective In late 2022, Western Europe and the United States experienced increased incidences of scarlet fever and life-threatening invasive group A streptococcal (iGAS) infections, especially among children. The outbreak was widely reported in the media in the United Kingdom, leading to increased emergency department (ED) attendances and threatened supplies of antibiotics. Our ED rapidly introduced point-of-care testing for GAS pharyngitis with the aim of rationalizing antibiotic prescribing. Methods We rapidly implemented the use of a molecular-based (polymerase chain reaction) point-of-care test for all children scoring 3 or higher on the McIsaac clinical prediction rule for GAS pharyngitis in children and performed a nested diagnostic accuracy study. The main outcome was concordance or discordance of antibiotic prescribing with the test result. Results Between December 2022 and April 2023, a total of 1,388 patients underwent point-of-care test (45% female, 55% male, median age of 3 y). Based on medical records review, 571 (41%) patients were tested inappropriately (i.e., they did not have documented pharyngitis or similar infection). Antibiotic prescribing was largely appropriate for patients with a diagnosis of pharyngitis or similar presentation, with 20.47% of children with a negative test prescribed antibiotics. Conclusion Antibiotic concordance was acceptable for children with pharyngitis and similar presentations, but nearly half of children without acute respiratory symptoms were tested inappropriately. EDs considering rapid implementation of point-of-care test in similar circumstances should ensure clear guidelines and training around their use so that clinically useful tests are not inadvertently dropped and resources are not wasted.
Digitally Enabled Care in Diverse Environments (DECIDE): protocol for a programme of rapid evaluation of technology-enabled remote monitoring in health and social care
Background There is considerable interest in technology-enabled remote monitoring in the UK. The aim is to respond to system pressures and improve access, experience and quality of care. There is an urgent need for process, outcome and impact evaluations of interventions at various stages of development and implementation to address evidence gaps around adoption, spread, sustainability and inequalities. Aim DECIDE (Digitally Enabled Care in Diverse Environments) is a centre for rapid evaluation of technology-enabled remote monitoring funded by the National Institute for Health and Care Research (2023 to 2026). It aims to support service users, service commissioners and providers of remote monitoring services, to enable high quality care. Example questions include: Is the technology-enabled remote monitoring innovation needed and, if so, for whom? How are technology-enabled care pathways implemented, and what are associated outcomes and impacts? What are the opportunities and challenges for sustainability, scale-up and spread? Methods A range of qualitative, quantitative and economic methods will be used. Exact methods and questions will be dependent on the focus, scope and scale of each evaluation. Evaluations will be informed by relevant theory, including the Non-Adoption, Abandonment and the challenges to Spread, Scale-up and Sustainability of technological innovation in health and care (NASSS) framework. A User Advisory Group and External Steering Committee, both with diverse voices, will help shape evaluation design, implementation and dissemination. Project-led dissemination will ensure timely sharing of insights and support impact. Conclusion Evaluations will advance understanding of when and for whom technology-enabled remote monitoring innovation is needed; how it works and how factors related to the intervention, implementation process and wider context influence adoption; associated outcomes and impacts, whether and how these tackle inequalities; and potential challenges to scale and spread. We aim to inform decision-making by policymakers, commissioners, providers, patients/service users and researchers.
Identifying benefits and concerns with using digital health services during COVID-19: Evidence from a hospital-based patient survey
Despite large-scale adoption during COVID-19, patient perceptions on the benefits and potential risks with receiving care through digital technologies have remained largely unexplored. A quantitative content analysis of responses to a questionnaire (N = 6766) conducted at a multi-site acute trust in London (UK), was adopted to identify commonly reported benefits and concerns. Patients reported a range of promising benefits beyond immediate usage during COVID-19, including ease of access; support for disease and care management; improved timeliness of access and treatment; and better prioritisation of healthcare resources. However, in addition to known risks such as data security and inequity in access, our findings also illuminate some less studied concerns, including perceptions of compromised safety; negative impacts on patient-clinician relationships; and difficulties in interpreting health information provided through electronic health records and mHealth apps. Implications for future research and practice are discussed.