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Pluralising Cancer
This Review essay seeks to interrogate the vast category of ‘cancer’. Taken together, the three books explored here pluralise cancer, locating it not just in organs and bodies but also in time and space—in the social, material, and historical specificities in which people become patients. These ethnographies break apart the notion of ‘the C word’, showing the diverse experiences and illnesses that are gathered under this banner. Cancers emerge as both unavoidably fatal and potentially controllable in different settings. At points, however, these anthropological texts may also reinforce the unity of a singular cancer. This essay suggests that clarity may be gained by more explicitly treating this notion as an object of their ethnography, historicising and theorising it. Wholeheartedly interrogating what is variously meant by the word cancer may have benefits, not only for improving the precision of anthropological work, but also for addressing the widespread fear that the term and its fairly uniform associations with suffering and death inspire.
Ambivalent Speculations: Learning to Live with Barrett's Esophagus in the UK Using Facebook Support Groups.
Drawing on fieldwork in Facebook support groups, in this article I explore how people, now patients, learnt to live with Barrett's esophagus, a risk state or "precancer" for a type of esophageal cancer. This diagnosis brought the possibility of both facing and averting cancerous futures into the present. Far from passive recipients, members worked to foreground speculations of "wanted futures" in which prompt surveillance successfully prevented cancer deaths, transforming cancer risk into an opportunity for hope. Speculation here was an ambivalent and active process, involving not only the "observation of potentiality," but the opening up and foreclosing of both desirable and undesirable potentialities.
'This has given me the peace of mind I needed': ethnographic insights into Barrett's oesophagus screening using the capsule sponge test
In 2021 and 2022, researchers carried out an implementation trial that considered how the capsule sponge test might be used to screen for Barrett's oesophagus using a mobile clinic in East Anglia. This paper offers insights from 15 months of ethnographic fieldwork studying the trial. It aims to highlight the value of the test in offering reassurance to worried patients, particularly to those with a family history of oesophageal adenocarcinoma. It also considers the variety of aims people held for the capsule sponge test, including the hope that it would address their symptoms of acid reflux, and the conflict that sometimes emerged as a result. The second half of the paper uses fieldwork carried out in virtual support groups for people with Barrett's oesophagus to explore experiences postdiagnosis, which sometimes were defined by fear of future cancers. It describes notable differences between the care offered to people with morphological risk conditions like Barrett's oesophagus and the care given to those with genetic risk conditions, including the provision of genetic counselling. More broadly, the paper highlights a tension between patient-centred and risk-centred medicine that is likely to grow as healthcare services continue to shift towards preventative approaches.
Family group conferencing for children and families: Evaluation of implementation, context and effectiveness (Family VOICE). Study protocol
Background Family group conferences (FGCs) in child welfare bring immediate and wider family members together to decide on the best way to meet a child’s needs. Unlike professionally led meetings, the aim is for decisions to be made by or with family members. Qualitative and mixed-method research with FGC participants tends to show positive experiences: most participants feel their voices are heard; FGCs facilitate family-driven solutions and closer relationships—within families and with social workers. Although there is existing literature on FGCs, there is a paucity of robust comparative UK evaluations, i.e., randomised controlled trials or quasi-experimental studies. Comparative studies internationally have focused on a narrow range of outcomes, not recognised the importance of context, and paid little attention to the quality of delivery. Some qualitative studies have considered process and context but there is scant measurement of these. The aims of this study are, firstly, to establish how FGCs improve outcomes for families and what factors vary their quality, and, secondly, to assess longer-term outcomes in terms of service use and associated costs. Methods Given the importance of process and context, evaluation informed by realist and complex systems approaches is needed. This multi-method evaluation includes a survey of FGC services in all UK local authorities (n = 212) to map service provision; co-design of programme theory and evaluation measures with family members who have experienced an FGC (n = 16–24) and practitioners (n = 16–24) in two sites; a prospective single-arm study of FGC variability and outcomes after six months; and comparison of service use and costs in FGC participants (n≥300 families) and a control group (n≥1000) after two years using a quasi-experiment. Discussion This is a pragmatic evaluation of an existing intervention, to identify what mechanisms and contexts influence effective process and longer-term outcomes. The study is registered with Research Registry (ref. 7432).
Student perspectives on school-based social workers: a mixed-methods study
Purpose: School social work, in various forms, is well established internationally and has a growing evidence base. Yet existing research focuses on professional perspectives rather than those of students. This study aims to fill this gap by exploring secondary school student perspectives of having social workers in schools (SWIS). It was undertaken in England as part of the SWIS trial, which tested whether secondary school-based social workers could improve child safety and well-being, identify issues more quickly and reduce the need for statutory services. Design/methodology/approach: A mixed-methods approach comprised a survey (n = 1,998 students) and interviews (n = 27 students). Surveys included questions on awareness, understanding, interaction with and attitudes towards the school-based social workers. Interviews involved a Q-sort activity followed by semi-structured questions on general attitudes and experiences. The Q-sort characterised prominent perspectives and how many students subscribed to them. Findings: Students were broadly positive about having a social worker in their school in the survey and interviews. Two prominent perspectives on SWIS were identified. The first (n = 17) was defined by students feeling positively overall and strongly agreeing that they trusted the social worker. The second (n = 4) was mixed in sentiment, defined by some anxiety about working with the social worker. In interviews, students relayed that social workers were easily accessible, offered emotional support and acted as a bridge between school and home. Originality/value: To the best of the authors’ knowledge, this study is the first to quantify student perspectives on having social workers at school and evidence attitudes and experiences about school-based social work as practiced during the SWIS trial.
The basic income for care leavers in Wales pilot evaluation: Protocol of a quasi-experimental evaluation
Background This study will evaluate the Basic Income for Care Leavers in Wales pilot (BIP), which is the most generous basic income scheme in the world. A cohort of care-experienced young people who become aged 18 during a 12-month enrolment period (July 2022-June 2023) are receiving £1,600 (before tax) per month for two years, and the Welsh Government intends this to have a range of benefits. This evaluation will examine the impact of BIP, the implementation of the pilot and how it is experienced, and its value for money. Methods The study is a theory-based quasi-experimental evaluation, and the design and methods are informed by ongoing co-production with care-experienced young people. We will estimate the impact of BIP on participants using self-reported survey data and routinely collected administrative data. This will include outcomes across a range of domains, including psychological wellbeing, physical and mental health, financial impact, education, training and volunteering. Comparisons between temporal (Welsh) and geographical (English, using administrative data) controls will be done using coarsened exact matching and difference in differences analysis. The process evaluation will examine how BIP is implemented and experienced, primarily through monitoring data (quantitative) and interview, observational, and focus group data (qualitative). The economic evaluation will take a public sector and a societal perspective to identify, measure and value the costs and outcomes of BIP, and to synthesise the evidence to inform a social cost-benefit analysis at 24 months post-intervention. Discussion BIP is unusual in that it targets a wide range of outcomes and is available to an entire national cohort of participants. The evaluation also has several practical constraints. Therefore, the study will use a range of methods and triangulate between different analyses to assess how successful it is. Findings will inform policy in relation to care leavers, social security and basic income studies worldwide.
Cost of Illness and Health-Related Quality of Life for Stuttering: Two Systematic Reviews
Purpose: For those who stutter, verbal communication is typically compromised in social situations. This may attract negative responses from listeners and stigmatization by society. These have the potential to impair health-related quality of life across a range of domains, including qualitative and quantitative impacts on speech output, mental health issues, and failure to attain educational and occupational potential. These systematic reviews were designed to explore this matter using traditional health economics perspectives of utility measures and cost of illness. Method: Studies were included if they involved children, adolescents, or adults with stuttering as a primary diagnosis. The quality of life search strategy identified 2,607 reports, of which three were included in the quality of life analysis. The cost of illness search strategy identified 3,778 reports, of which 39 were included in the cost of illness analysis. Results: Two of the three studies included in the quality of life analysis had a high risk of bias. When measured using utility scores, quality of life for people who stutter was in the range of those reported for chronic health conditions such as diabetes mellitus, cardiovascular disease, and cancer. However, there is little such evidence of quality of life impairment during the preschool years. Studies included in the cost of illness analysis carried considerable risk of bias overall. Conclusions: For people who stutter, there are substantive direct and indirect costs of illness. These include impairment, challenges, and distress across many domains throughout life, including income, education, employment, and social functioning. Evidence of quality of life impairment using utility measures is extremely limited. If this situation is not remedied, the lifetime impairment, challenges, and distress experienced by those who stutter cannot be documented in a form that can be used to influence health policy and health care spending.
The Pain Course: A randomised controlled trial and economic evaluation of an internet-delivered pain management program
There is interest in the potential of Internet-delivered programs to cost-effectively increase access to pain management for people with chronic pain. However, few large-scale clinical and economic evaluations have been undertaken. Using a randomised controlled trial design, the current study (n = 659) examined the clinical efficacy, cost-effectiveness, and cost utility of an Internet-delivered pain management program for people with mixed chronic pain conditions when delivered with optional clinician support. The treatment group reported significant improvements in disability, depression, anxiety, average pain intensity, and quality-adjusted life years (QALYs), compared with control, and exhibited relatively high levels of treatment engagement and satisfaction. Each additional clinical improvement (defined as ≥ 30% improvement) produced by the intervention, over control, was associated with a cost of $48, $27, $38, and $83 for disability, depression, anxiety, and average pain intensity, respectively. Gaining one QALY was associated with a cost of $152 or $11,910 per QALY when an 80% probability criterion for cost utility was applied. The program itself was associated a relatively small, fixed, cost per patient but was not cost saving over the brief intervention period. The findings support the clinical efficacy and cost-effectiveness of Internet-delivered programs with "on demand" clinician support as a way to increase access to pain management. Key limitations of the current study include the use of a waitlist-control group, a short follow-up period, and the focus on governmental healthcare costs. Further evaluation of these programs is necessary if they are scaled up and offered as routine care.
THE EFFECT OF THE COVID-19 PANDEMIC ON MENTAL HEALTH: QUASI-EXPERIMENTAL EVIDENCE FROM INDONESIA
Objectives: This research aims to explore and analyze the effect of the COVID-19 pandemic on mental health status as measured by DASS-21. Background Problems: The prolonged impact of the COVID-19 pandemic on the global economy may have adversely affected mental health. A decrease in income and consumption and the uncertainties surrounding job security and business performance have been some of the main factors contributing to mental health issues. Novelty: This paper aims to evaluate the effect of the COVID-19 pandemic-as a natural experiment-on mental health measured by DASS-21 and how the effect of the pandemic varied across different socioeconomic subgroups. Research Methods: We conducted an online survey across Indonesia to collect self-reported mental health status and socioeconomic characteristics before and during the COVID-19 pandemic to measure its impacts on mental health. Finding/Results: Our results suggest that the COVID-19 pandemic has had an adverse impact on mental health, particularly in terms of anxiety and stress. The effect has been higher among individuals with lower self-efficacy, lower expenditure, and lower education levels. Conclusion: The health and economic crisis driven by the COVID-19 pandemic affected individuals' mental health, suggesting the need for appropriate policy responses.
Family Group Conference Provision in UK Local Authorities and Associations with Children Looked after Rates
Family group conferences (FGCs) in child welfare share decision-making with family members by bringing the immediate and wider family together to make a plan to meet a child's needs. This paper reports survey findings on FGC provision in the UK in 2022 and explores whether in England the presence of an FGC service and the rate of FGC provision is associated with the rate of children in care, entering care, in kinship foster care and leaving care. Seventy-nine per cent (n = 167) of local authorities in the UK provided FGCs to families, and 14 per cent (n = 29) did not. Services that were more established offered a more diverse range of FGCs. The introduction of FGCs in English local authorities was associated with a higher rate of children in care, but also higher rates of kinship foster care, a key goal of FGCs where it is not possible for children to stay with their parents. Higher rates of FGCs were associated with more children leaving care, possibly due to reunification with birth families. To understand in more detail, the circumstances of children in and leaving care in local authorities with FGCs, individual data linkage studies are needed.
Using an analytic auto-netnographic approach to explore the perceptions of paramedics in primary care
Introduction: Paramedics in the UK are moving from emergency ambulance services into primary care, where they are employed to boost the clinical workforce. Whereas there is emerging research that seeks to understand the contribution of paramedics to the primary care workforce, there is none regarding the perceptions paramedics have regarding their role in primary care.Methods: An analytic auto-ethnography was undertaken, utilising a peripheral membership approach for online communities used by paramedics on Facebook, Reddit and Twitter (now X). Over a 3-month period (December 2021 to February 2022), the primary researcher reflected on the conversations, comments and opinions posted within these communities within a reflexive (immersion) journal, considering them against the context of her own experience.Results: Paramedics in primary care, who are generally isolated due to their geographical isolation from each other, utilise online social spaces to foster a community of practice. These forums are used to discuss their clinical role, education and experiences, as well as to consider their place within the primary care workforce.Conclusion: This is the first application of this methodology within online social spaces utilised by UK paramedics. This article also presents novel use of a peripheral membership approach within an analytic auto-netnography in public online spaces for researcher-practitioners.
Improving health outcomes for young people with long term conditions: The role of digital communication in current and future patient-clinician communication for NHS providers of specialist clinical services for young people - LYNC study protocol.
BACKGROUND: Young people living with long term conditions are vulnerable to health service disengagement. This endangers their long term health. Studies report requests for digital forms of communication - email, text, social media - with their health care team. Digital clinical communication is troublesome for the UK NHS. AIM: In this article we aim to present the research protocol for evaluating the impacts and outcomes of digital clinical communications for young people living with long term conditions and provide critical analysis of their use, monitoring and evaluation by NHS providers (LYNC study: Long term conditions, Young people, Networked Communications). METHODS: The research involves: (a) patient and public involvement activities with 16-24 year olds with and without long term health conditions; (b) six literature reviews; (c) case studies - the main empirical part of the study - and (d) synthesis and a consensus meeting. Case studies use a mixed methods design. Interviews and non-participant observation of practitioners and patients communicating in up to 20 specialist clinical settings will be combined with data, aggregated at the case level (non-identifiable patient data) on a range of clinical outcomes meaningful within the case and across cases. We will describe the use of digital clinical communication from the perspective of patients, clinical staff, support staff and managers, interviewing up to 15 young people and 15 staff per case study. Outcome data includes emergency admissions, A&E attendance and DNA (did not attend) rates. Case studies will be analysed to understand impacts of digital clinical communication on patient health outcomes, health care costs and consumption, ethics and patient safety.
Developmental motor problems and health‐related quality of life in 5‐year‐old children born extremely preterm: A European cohort study
AbstractAimTo measure the association between cerebral palsy (CP) and non‐CP‐related movement difficulties and health‐related quality of life (HRQoL) among 5‐year‐old children born extremely preterm (<28 weeks gestational age).MethodWe included 5‐year‐old children from a multi‐country, population‐based cohort of children born extremely preterm in 2011 to 2012 in 11 European countries (n = 1021). Children without CP were classified using the Movement Assessment Battery for Children, Second Edition as having significant movement difficulties (≤5th centile of standardized norms) or being at risk of movement difficulties (6th–15th centile). Parents reported on a clinical CP diagnosis and HRQoL using the Pediatric Quality of Life Inventory. Associations were assessed using linear and quantile regressions.ResultsCompared to children without movement difficulties, children at risk of movement difficulties, with significant movement difficulties, and CP had lower adjusted HRQoL total scores (β [95% confidence interval] = −5.0 [−7.7 to −2.3], −9.1 [−12.0 to −6.1], and − 26.1 [−31.0 to −21.2]). Quantile regression analyses showed similar decreases in HRQoL for all children with CP, whereas for children with non‐CP‐related movement difficulties, reductions in HRQoL were more pronounced at lower centiles.InterpretationCP and non‐CP‐related movement difficulties were associated with lower HRQoL, even for children with less severe difficulties. Heterogeneous associations for non‐CP‐related movement difficulties raise questions for research about mitigating and protective factors.
Treating very preterm European infants with inhaled nitric oxide increased in‐hospital mortality but did not affect neurodevelopment at 5 years of age
AbstractAimWe examined the outcomes of using inhaled nitric oxide (iNO) to treat very preterm born (VPT) infants across Europe.MethodsThis was a sub‐study of the Screening to Improve Health in Very Preterm Infants in Europe research. It focused on all infants born between 22 + 0 and 31 + 6 weeks/days of gestation from 2011 to 2012, in 19 regions in 11 European countries. We studied 7268 infants admitted to neonatal care and 5 years later, we followed up the outcomes of 103 who had received iNO treatment. They were compared with 3502 propensity score‐matched controls of the same age who did not receive treatment.ResultsAll countries used iNO and 292/7268 (4.0%) infants received this treatment, ranging from 1.2% in the UK to 10.5% in France. There were also large regional variations within some countries. Infants treated with iNO faced higher in‐hospital mortality than matched controls (odds ratio 2.03, 95% confidence interval 1.33–3.09). The 5‐year follow‐up analysis of 103 survivors showed no increased risk of neurodevelopmental impairment after iNO treatment.ConclusioniNO was used for VPT patients in all 11 countries. In‐hospital mortality was increased in infants treated with iNO, but long‐term neurodevelopmental outcomes were not affected in 103 5‐year‐old survivors.
Participatory learning and action cycles with women's groups to prevent neonatal death in low-resource settings: A multi-country comparison of cost-effectiveness and affordability.
WHO recommends participatory learning and action cycles with women's groups as a cost-effective strategy to reduce neonatal deaths. Coverage is a determinant of intervention effectiveness, but little is known about why cost-effectiveness estimates vary significantly. This article reanalyses primary cost data from six trials in India, Nepal, Bangladesh and Malawi to describe resource use, explore reasons for differences in costs and cost-effectiveness ratios, and model the cost of scale-up. Primary cost data were collated, and costing methods harmonized. Effectiveness was extracted from a meta-analysis and converted to neonatal life-years saved. Cost-effectiveness ratios were calculated from the provider perspective compared with current practice. Associations between unit costs and cost-effectiveness ratios with coverage, scale and intensity were explored. Scale-up costs and outcomes were modelled using local unit costs and the meta-analysis effect estimate for neonatal mortality. Results were expressed in 2016 international dollars. The average cost was $203 (range: $61-$537) per live birth. Start-up costs were large, and spending on staff was the main cost component. The cost per neonatal life-year saved ranged from $135 to $1627. The intervention was highly cost-effective when using income-based thresholds. Variation in cost-effectiveness across trials was strongly correlated with costs. Removing discounting of costs and life-years substantially reduced all cost-effectiveness ratios. The cost of rolling out the intervention to rural populations ranges from 1.2% to 6.3% of government health expenditure in the four countries. Our analyses demonstrate the challenges faced by economic evaluations of community-based interventions evaluated using a cluster randomized controlled trial design. Our results confirm that women's groups are a cost-effective and potentially affordable strategy for improving birth outcomes among rural populations.
