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A blog by Dr Gurpreet Singh Kalra and Shawn D. Mathis, members of cohort 1 of the MSc in Global Healthcare Leadership
Investigating the conditions in which women GPs thrive: a realist review protocol.
BACKGROUND: Women now make up approximately half of the GP workforce. However, many are leaving the profession. This could be because they experience higher rates of burnout, stress and anxiety, suicide, and lower rates of career progression. They also take on a greater load of emotional labour. Retaining this staff group is one of five priorities for future policy and research. AIM: This research aims to synthesise the available evidence on how general practice workplaces can best support women GPs to thrive at work. DESIGN & SETTING: We propose to undertake a realist review, which seeks to understand why an approach may work in specific contexts. This involves building an understanding of how contextual factors affect the activation of mechanisms (ie, changes in participant reasoning or behaviours) to produce their outcomes. METHOD: We will locate available evidence on the topic, and, using a realist logic of analysis develop an understanding as to how, why, for whom and in what contexts women GPs thrive at work. Evidence will include: academic literature, policy documents, media items and guidelines. RESULTS: Findings will be co-disseminated with PPI and stakeholder members to all key groups including policymakers, employers, the public, and academic audiences by a wide variety of means. CONCLUSION: This review is intended to improve understanding of how working environments affect women GPs. It is anticipated that findings will support the implementation of strategies to better support this group to thrive at work.
Socio-sexual norms and young people's sexual health in urban Bangladesh, India, Nepal and Pakistan: A qualitative scoping review.
In South Asia, young people face myriad challenges and opportunities regarding their sexual lives relating to varied experiences of norms and restrictions; gender norms and socio-sexual taboos limit communication around sexual health which in turn can affect sexual health outcomes. In this article we focus on norms affecting young people's sexual health experiences in urban settings in Bangladesh, India, Nepal, and Pakistan. We conducted a scoping review of peer reviewed empirical studies based on qualitative data pertaining to young people's experiences of sexuality and sexual health in Bangladesh, India, Nepal, and Pakistan. We searched four electronic databases for articles published (2010-2022), using terms relating to sexual health, young people, and South Asia. Sixteen articles met the inclusion criteria with sample size ranging from 9 to 180. The authors followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines for the design and analysis of this study. We synthesised the included articles using thematic analysis. The studies covered topics such as sexual health services and contraceptive use; sexuality education and communication; and gender and sexual violence. Recurring findings included: parental and societal expectations around premarital 'sexual purity' through abstinence; limited communication around sexuality between young people and parents/adults; gender norms limiting young women's sexual and reproductive decision making; and an absence of research on experiences of sexual and gender minorities. We identified common themes as well as prominent gaps which must be addressed if we are to capture diverse experiences and build a better evidence base to improve sexual health services for young people in the region. The body of research fails to include experiences of young people with diverse gender, sexual orientation, and sex characteristics.
Community-led responses to COVID-19 within Gypsy and Traveller communities in England: A participatory qualitative research study.
Individuals were asked to play an active role in infection control in the COVID-19 pandemic. Yet while government messages emphasised taking responsibility for the public good (e.g. to protect the National Health Service), they appeared to overlook social, economic and political factors affecting the ways that people were able to respond. We co-produced participatory qualitative research with members of Gypsy and Traveller communities in England between October 2021 and February 2022 to explore how they had responded to COVID-19, its containment (test, trace, isolate) and the contextual factors affecting COVID-19 risks and responses within the communities. Gypsies and Travellers reported experiencing poor treatment from health services, police harassment, surveillance, and constrained living conditions. For these communities, claiming the right to health in an emergency required them to rely on community networks and resources. They organised collective actions to contain COVID-19 in the face of this ongoing marginalisation, such as using free government COVID-19 tests to support self-designed protective measures including community-facilitated testing and community-led contact tracing. This helped keep families and others safe while minimising engagement with formal institutions. In future emergencies, communities must be given better material, political and technical support to help them to design and implement effective community-led solutions, particularly where government institutions are untrusted or untrustworthy.
Provision of cervical screening for transmasculine patients: a review of clinical and programmatic guidelines.
BackgroundMost cervical cancer can be prevented through routine screening. Disparities in uptake of routine screening therefore translate into disparities in cervical cancer incidence and outcomes. Transmasculine people including transgender men experience multiple barriers to cervical screening and their uptake of screening is low compared with cisgender women. Comprehensive evidence-based guidelines are needed to improve cervical screening for this group.MethodsWe searched for and synthesised clinical and programmatic guidelines for the provision of cervical screening for transmasculine patients.FindingsThe guidelines offer recommendations addressing: (1) reception, check-in and clinic facilities; (2) patient data and invitation to screening; (3) improving inclusion in screening programmes; and (4) sexual history taking, language and identity. Guidelines offer strategies for alleviating physical and psychological discomfort during cervical screening and recommendations on what to do if the screening procedure cannot be completed. Most of the guidelines were from and for high-income countries.DiscussionThe evidence base is limited, but existing guidelines provide recommendations to ensure life-saving screening services are available to all who need them. We were only able to identify one set of guidelines for a middle-income country, and none for low-income countries. We encourage the involvement of transmasculine people in the development of future guidelines.
Reimagining authorship guidelines to promote equity in co-produced academic collaborations.
Authorship of academic papers is a currency that can bring career advantages in academia and other industries. How authorship should be decided is not always clear, particularly in co-produced research with non-academic collaborators, for which existing authorship guidelines are largely silent. In this paper, we critically reflect on what constitutes written authorship in the context of co-produced health research. We present examples from our own work to illustrate the argument we make, including publishing a co-authored paper with non-academic partners. We consider questions of what constitutes authorship and how it is mutually understood. We discuss some of the opportunities and limits to participation and how these might translate into academic authorship as a collaborative research output. Finally, we explore the potential of authorship guidelines as a resource for critical reflection on what we mean by co-produced work and how we recognise contributions to global health research. We suggest that authorship guidelines should be adapted to encourage attribution of co-produced research to include non-academic as well as academic collaborators, and we provide a draft guideline for how this might be done.
Communicating and understanding pain: Limitations of pain scales for patients with sickle cell disorder and other painful conditions.
Pain communication in healthcare is challenging. We examine use of pain scales to communicate pain severity via a case study of people with sickle cell disorder (SCD). We show how pain communication involves complex social interactions between patients, healthcare professionals and significant others - none of which are included in pain ratings. Failure to account for relational aspects of pain may cause problems for any patient. For SCD, mutual distrust shapes pain communication, further complicating clinical assessments. Moreover, SCD pain is particularly severe, making ratings hard to interpret compared with ratings from non-SCD patients, potentially exacerbating problems in managing pain relief.
Working together to co-produce better health: The experience of the Collaboration for Leadership in Applied Health Research and Care for Northwest London.
ObjectivesTo improve the provision of health care, academics can be asked to collaborate with clinicians, and clinicians with patients. Generating good evidence on health care practice depends on these collaborations working well. Yet such relationships are not the norm. We examine how social science research and health care improvement practice were linked through a programme designed to broker collaborations between clinicians, academics, and patients to improve health care - the UK National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care for Northwest London. We discuss the successes and challenges of the collaboration and make suggestions on how to develop synergistic relationships that facilitate co-production of social science knowledge and its translation into practice.MethodsA qualitative approach was used, including ethnographic elements and critical, reflexive dialogue between members of the two collaborating teams.ResultsKey challenges and remedies were connected with the risks associated with new ways of working. These risks included differing ideas between collaborators about the purpose, value, and expectations of research, and institutional opposition. Dialogue between collaborators did not mean absence of tensions or clashes. Risk-taking was unpopular - institutions, funders, and partners did not always support it, despite simultaneously demanding 'innovation' in producing research that influenced practice.ConclusionsOur path was made smoother because we had funding to support the creation of a 'potential space' to experiment with different ways of working. Other factors that can enhance collaboration include a shared commitment to dialogical practice, a recognition of the legitimacy of different partners' knowledge, a long timeframe to identify and resolve problems, the maintenance of an enabling environment for collaboration, a willingness to work iteratively and reflexively, and a shared end goal.
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.