Applying the community readiness model to identify and address inequity in end-of-life care in South Asian communities.

BACKGROUND: Individuals from minoritised ethnic backgrounds are less likely than individuals from the dominant ethnic group to access palliative care services and to have documented Advance Care Plans. They are more likely to be admitted to hospital in the last months of life. AIM: To use the Community Readiness Model to identify the barriers that influence how South Asian communities access and use two new palliative care services. DESIGN: The Community Readiness Model is a validated tool that measures the readiness of a community. Key stakeholders were asked to: (i) complete a questionnaire to assess South Asian communities' readiness to engage in advance care planning and, (ii) attend a focus group to explore their views on the communities' understandings of palliative and end-of-life care. SETTING/PARTICIPANTS: Ten key stakeholders who held a variety of occupations within palliative and end-of-life care services were recruited from the community. FINDINGS: The South Asian communities were found to be at the 'pre-planning' stage of readiness, despite initiatives to improve awareness. The readiness of the health system was found to be limited, with a narrow medical focus during advance care planning, poor integration of voluntary and community services and limited understanding of what people consider a 'good' death. CONCLUSIONS: The Community Readiness Model allowed insight into the South Asian communities' awareness of and readiness (to use) palliative care services. Using the Community Readiness Model before service implementation allowed steps to be taken to avoid widening inequities in access and use of new services.

An ecological framework for improving child and adolescent health.

The rise in non-communicable disease as a principal cause of premature mortality and a continuing failure to address health inequalities requires a critical examination of prevailing paradigms in health. In this paper, we offer ecology as an alternative way to view health need and as a guide to action to enhance human health and model a healthy economy. After describing the shortcomings of the prevailing biophysical approach to health, we describe an ecological approach to health that brings to the forefront social and environmental determinants and empowers health workers together with their communities to achieve a health-affirming society and economy.

Growing up in Bradford: protocol for the age 7-11 follow up of the Born in Bradford birth cohort.

BACKGROUND: Born in Bradford (BiB) is a prospective multi-ethnic pregnancy and birth cohort study that was established to examine determinants of health and development during childhood and, subsequently, adult life in a deprived multi-ethnic population in the north of England. Between 2007 and 2010, the BiB cohort recruited 12,453 women who experienced 13,776 pregnancies and 13,858 births, along with 3353 of their partners. Forty five percent of the cohort are of Pakistani origin. Now that children are at primary school, the first full follow-up of the cohort is taking place. The aims of the follow-up are to investigate the determinants of children's pre-pubertal health and development, including through understanding parents' health and wellbeing, and to obtain data on exposures in childhood that might influence future health. METHODS: We are employing a multi-method approach across three data collection arms (community-based family visits, school based physical assessment, and whole classroom cognitive, motor function and wellbeing measures) to follow-up over 9000 BiB children aged 7-11 years and their families between 2017 and 2021. We are collecting detailed parent and child questionnaires, cognitive and sensorimotor assessments, blood pressure, anthropometry and blood samples from parents and children. Dual x-ray absorptiometry body scans, accelerometry and urine samples are collected on subsamples. Informed consent is collected for continued routine data linkage to health, social care and education records. A range of engagement activities are being used to raise the profile of BiB and to disseminate findings. DISCUSSION: Our multi-method approach to recruitment and assessment provides an efficient method of collecting rich data on all family members. Data collected will enhance BiB as a resource for the international research community to study the interplay between ethnicity, socioeconomic circumstances and biology in relation to cardiometabolic health, mental health, education, cognitive and sensorimotor development and wellbeing.

Integrating research and system-wide practice in public health: lessons learnt from Better Start Bradford.

Many interventions that are delivered within public health services have little evidence of effect. Evaluating interventions that are being delivered as a part of usual practice offers opportunities to improve the evidence base of public health. However, such evaluation is challenging and requires the integration of research into system-wide practice. The Born in Bradford's Better Start experimental birth cohort offers an opportunity to efficiently evaluate multiple complex community interventions to improve the health, wellbeing and development of children aged 0-3 years. Based on the learning from this programme, this paper offers a pragmatic and practical guide to researchers, public health commissioners and service providers to enable them to integrate research into their everyday practice, thus enabling relevant and robust evaluations within a complex and changing system.Using the principles of co-production the key challenges of integrating research and practice were identified, and appropriate strategies to overcome these, developed across five key stages: 1) Community and stakeholder engagement; 2) Intervention design; 3) Optimising routinely collected data; 4) Monitoring implementation; and 5) Evaluation. As a result of our learning we have developed comprehensive toolkits ( https://borninbradford.nhs.uk/what-we-do/pregnancy-early-years/toolkit/ ) including: an operational guide through the service design process; an implementation and monitoring guide; and an evaluation framework. The evaluation framework incorporates implementation evaluations to enable understanding of intervention performance in practice, and quasi experimental approaches to infer causal effects in a timely manner. We also offer strategies to harness routinely collected data to enhance the efficiency and affordability of evaluations that are directly relevant to policy and practice.These strategies and tools will help researchers, commissioners and service providers to work together to evaluate interventions delivered in real-life settings. More importantly, however, we hope that they will support the development of a connected system that empowers practitioners and commissioners to embed innovation and improvement into their own practice, thus enabling them to learn, evaluate and improve their own services.

Using Birth Cohort Data to Assess the Impact of the UK 2008-2010 Economic Recession on Smoking During Pregnancy.

INTRODUCTION: Despite the well-known link between stress and smoking, evidence for associations between economic recession, financial stress, and smoking is contradictory. In this study, we assess whether women were more likely to continue smoking during pregnancy if they were exposed to the UK 2008-2010 economic recession during pregnancy than those who were unexposed, and whether this relationship is mediated by financial stress. METHODS: We used cross-sectional data on 2775 pregnant women who were regular smokers before pregnancy and who were enrolled in the UK Born in Bradford cohort study between March 2007 and December 2010. The cutoff date for exposure to recession was set as August 1, 2008, based on local and national economic data. Multivariable logistic regression analysis included potential confounders: maternal age, parity, cohabitation, ethnicity, and maternal age. The mediating role of financial stress was analyzed using "worse off financially" and a "difficult financial situation" as indicators of financial stress in Sobel-Goodman mediation tests with bootstrap resampling. RESULTS: After taking into account potential confounders, exposure to recession was associated with continued smoking during pregnancy (OR = 1.19, 95% CI = 1.01 to 1.41, p = 0.03). A worse financial situation and a difficult financial situation were identified as mediators, explaining 8.4% and 17.6%, respectively, of the relationship between exposure to recession and smoking during pregnancy. CONCLUSIONS: Smoking during pregnancy is associated with exposure to the UK 2008-2010 economic recession during pregnancy, and this relationship is partly mediated by financial stress. IMPLICATIONS: Health inequalities in smoking during pregnancy are affected by economic recession, as those who are most likely to smoke are also most likely to experience the financial stress resulting from economic recession. Socioeconomic conditions at the societal and individual level are important targets when aiming to reduce rates of smoking during pregnancy.

Healthcare use for children with complex needs: using routine health data linked to a multiethnic, ongoing birth cohort.

OBJECTIVES: Congenital anomaly (CA) are a leading cause of disease, death and disability for children throughout the world. Many have complex and varying healthcare needs which are not well understood. Our aim was to analyse the healthcare needs of children with CA and examine how that healthcare is delivered. DESIGN: Secondary analysis of observational data from the Born in Bradford study, a large prospective birth cohort, linked to primary care data and hospital episode statistics. Negative binomial regression with 95% CIs was performed to predict healthcare use. The authors conducted a subanalysis on referrals to specialists using paper medical records for a sample of 400 children. SETTING: Primary, secondary and tertiary healthcare services in a large city in the north of England. PARTICIPANTS: All children recruited to the birth cohort between March 2007 and December 2011. A total of 706 children with CA and 10 768 without CA were included in the analyses. PRIMARY AND SECONDARY OUTCOME MEASURES: Healthcare use for children with and without CA aged 0 to <5 years was the primary outcome measure after adjustment for confounders. RESULTS: Primary care consultations, use of hospital services and referrals to specialists were higher for children with CA than those without. Children in economically deprived neighbourhoods were more likely to be admitted to hospital than consult primary care. Children with CA had a higher use of hospital services (ß 1.48, 95% CI 1.36 to 1.59) than primary care consultations (ß 0.24, 95% CI 1.18 to 0.30). Children with higher educated mothers were less likely to consult primary care and hospital services. CONCLUSIONS: Hospital services are most in demand for children with CA, but also for children who were economically deprived whether they had a CA or not. The complex nature of CA in children requires multidisciplinary management and strengthened coordination between primary and secondary care.

Is food insecurity associated with maternal health among UK ethnic groups? An exploration of women in the BiB cohort.

Food insecurity is a determinant of maternal health; however, research on the health impact of food insecurity among mothers of varying ethnicities is under-developed. We assessed the association of food insecurity and health among white British and Pakistani mothers. Data from the Born in Bradford cohort were matched with data on food insecurity and self-reported health from the nested BiB1000 study (N = 1280). Food insecurity was associated with elevated odds of fair/poor health among white British mothers but not Pakistani mothers. Adjusting for financial security, the association between food insecurity and poor health was not significant among either white British or Pakistani mothers.

Food insecurity and socio-demographic characteristics in two UK ethnic groups: an analysis of women in the Born in Bradford cohort.

Background: The use of foodbanks has risen sharply in the UK; however, the epidemiology of UK food insecurity is undeveloped. This study contributes to the field by analysing socio-demographic risk factors for food insecurity in a female, ethnically diverse population. Methods: Data from the Born in Bradford (BiB) cohort were matched with data on food insecurity from the nested BiB1000 study (N = 1280). Logistic regression was used to model food insecurity in relation to ethnicity and socio-demographic factors. Results: Food insecurity, reported by 13.98% of the sample, was more likely among White British than Pakistani women (crude Odds Ratio (OR) 1.94, 95% CI: 1.37; 2.74, adjusted OR 2.37, 95% CI: 1.57; 3.59). In fully adjusted analyses, food insecurity was associated with a range of socio-economic measures, particularly the receipt of mean-tested benefits (adjusted OR 2.11, 95% CI: 1.41; 3.15) and perception of financial insecurity (adjusted OR 8.91, 95% CI: 4.14; 19.16 for finding it difficult/very difficult compared to living comfortably). Conclusions: The finding that food insecurity prevalence may be higher than previously thought and that food insecurity is highly associated with socio-economic status, notably benefit receipt, is a cause for concern necessitating an urgent policy response.

Born in Bradford's Better Start: an experimental birth cohort study to evaluate the impact of early life interventions.

BACKGROUND: Early interventions are recognised as key to improving life chances for children and reducing inequalities in health and well-being, however there is a paucity of high quality research into the effectiveness of interventions to address childhood health and development outcomes. Planning and implementing standalone RCTs for multiple, individual interventions would be slow, cumbersome and expensive. This paper describes the protocol for an innovative experimental birth cohort: Born in Bradford's Better Start (BiBBS) that will simultaneously evaluate the impact of multiple early life interventions using efficient study designs. Better Start Bradford (BSB) has been allocated £49 million from the Big Lottery Fund to implement 22 interventions to improve outcomes for children aged 0-3 in three key areas: social and emotional development; communication and language development; and nutrition and obesity. The interventions will be implemented in three deprived and ethnically diverse inner city areas of Bradford. METHOD: The BiBBS study aims to recruit 5000 babies, their mothers and their mothers' partners over 5 years from January 2016-December 2020. Demographic and socioeconomic information, physical and mental health, lifestyle factors and biological samples will be collected during pregnancy. Parents and children will be linked to their routine health and local authority (including education) data throughout the children's lives. Their participation in BSB interventions will also be tracked. BiBBS will test interventions using the Trials within Cohorts (TwiCs) approach and other quasi-experimental designs where TwiCs are neither feasible nor ethical, to evaluate these early life interventions. The effects of single interventions, and the cumulative effects of stacked (multiple) interventions on health and social outcomes during the critical early years will be measured. DISCUSSION: The focus of the BiBBS cohort is on intervention impact rather than observation. As far as we are aware BiBBS is the world's first such experimental birth cohort study. While some risk factors for adverse health and social outcomes are increasingly well described, the solutions to tackling them remain elusive. The novel design of BiBBS can contribute much needed evidence to inform policy makers and practitioners about effective approaches to improve health and well-being for future generations.

Using latent class analysis to develop a model of the relationship between socioeconomic position and ethnicity: cross-sectional analyses from a multi-ethnic birth cohort study.

BACKGROUND: Almost all studies in health research control or investigate socioeconomic position (SEP) as exposure or confounder. Different measures of SEP capture different aspects of the underlying construct, so efficient methodologies to combine them are needed. SEP and ethnicity are strongly associated, however not all measures of SEP may be appropriate for all ethnic groups. METHODS: We used latent class analysis (LCA) to define subgroups of women with similar SEP profiles using 19 measures of SEP. Data from 11,326 women were used, from eight different ethnic groups but with the majority from White British (40%) or Pakistani (45%) backgrounds, who were recruited during pregnancy to the Born in Bradford birth cohort study. RESULTS: Five distinct SEP subclasses were identified in the LCA: (i) "Least socioeconomically deprived and most educated" (20%); (ii) "Employed and not materially deprived" (19%); (iii) "Employed and no access to money" (16%); (iv) "Benefits and not materially deprived" (29%) and (v) "Most economically deprived" (16%). Based on the magnitude of the point estimates, the strongest associations were that compared to White British women, Pakistani and Bangladeshi women were more likely to belong to groups: (iv) "benefits and not materially deprived" (relative risk ratio (95% CI): 5.24 (4.44, 6.19) and 3.44 (2.37, 5.00), respectively) or (v) most deprived group (2.36 (1.96, 2.84) and 3.35 (2.21, 5.06) respectively) compared to the least deprived class. White Other women were more than twice as likely to be in the (iv) "benefits and not materially deprived group" compared to White British women and all ethnic groups, other than the Mixed group, were less likely to be in the (iii) "employed and not materially deprived" group than White British women. CONCLUSIONS: LCA allows different aspects of an individual's SEP to be considered in one multidimensional indicator, which can then be integrated in epidemiological analyses. Ethnicity is strongly associated with these identified subgroups. Findings from this study suggest a careful use of SEP measures in health research, especially when looking at different ethnic groups. Further replication of these findings is needed in other populations.

Potential social, economic and general health benefits of consanguineous marriage: results from the Born in Bradford cohort study.

BACKGROUND: More than 1 billion people live in societies where consanguineous marriages are common. When children are born to consanguineous unions, there is an increased probability of the expression of single-gene disorders with a recessive mode of inheritance. There are presumptive social benefits of consanguineous marriages reported in the literature. METHODS: The UK's Born in Bradford birth cohort study recruited 12 453 women at 26-28 weeks' gestation between 2007 and 2010. In all, 11 396 completed a questionnaire, including questions about their relationship to their baby's father. We compared Pakistani and Other ethnic groups in consanguineous relationships and Pakistani, Other and White British groups not in consanguineous relationships, calculating percentages and age-adjusted prevalence ratios (95% confidence intervals). RESULTS: In the Pakistani group, 59.3% of women (n = 3038) were blood relatives of their baby's father. Consanguinity was uncommon in the Other ethnic group (7.3%, n = 127) and rare (n = 5) in the White British group. Compared with non-consanguineous counterparts, mothers in consanguineous relationships were socially and economically disadvantaged (e.g. never employed, less likely to have higher education). The Pakistani consanguineous group's social, economic and health lifestyle circumstances were equivalent to, in some cases better than, women in non-consanguineous relationships (e.g. up-to-date in paying bills, or in disagreeing that they wished for more warmth in their marital relationship). The consanguineous relationship group had less separation/divorce. Rates of cigarette smoking during pregnancy were lower in mothers in consanguineous relationships. CONCLUSION: Debate about consanguinity should balance the potential protective effect of consanguineous relationships with established genetic risk of congenital anomaly in children.

A systematic review of the relationships between social capital and socioeconomic inequalities in health: a contribution to understanding the psychosocial pathway of health inequalities.

INTRODUCTION: Recent research on health inequalities moves beyond illustrating the importance of psychosocial factors for health to a more in-depth study of the specific psychosocial pathways involved. Social capital is a concept that captures both a buffer function of the social environment on health, as well as potential negative effects arising from social inequality and exclusion. This systematic review assesses the current evidence, and identifies gaps in knowledge, on the associations and interactions between social capital and socioeconomic inequalities in health. METHODS: Through this systematic review we identified studies on the interactions between social capital and socioeconomic inequalities in health published before July 2012. RESULTS: The literature search resulted in 618 studies after removal of duplicates, of which 60 studies were eligible for analysis. Self-reported measures of health were most frequently used, together with different bonding, bridging and linking components of social capital. A large majority, 56 studies, confirmed a correlation between social capital and socioeconomic inequalities in health. Twelve studies reported that social capital might buffer negative health effects of low socioeconomic status and five studies concluded that social capital has a stronger positive effect on health for people with a lower socioeconomic status. CONCLUSIONS: There is evidence for both a buffer effect and a dependency effect of social capital on socioeconomic inequalities in health, although the studies that assess these interactions are limited in number. More evidence is needed, as identified hypotheses have implications for community action and for action on the structural causes of social inequalities.

Dying trajectories in heart failure.

OBJECTIVES: To explore dying trajectories in heart failure. DESIGN: Prospective, longitudinal study. SETTING: Sixteen GP surgeries in four demographically contrasting areas of the UK. PARTICIPANTS: A total of 27 heart failure patients, >60 years of age, who completed questionnaires for at least five time-points before death. MAIN OUTCOME MEASURES: Kansas City Cardiomyopathy Questionnaire Physical Limitation Scale. RESULTS: No 'typical' dying trajectory could be identified, and only a minority of patients conformed to the theoretical trajectory of dying in heart failure. CONCLUSIONS: This study provides the first prospective data regarding physical decline prior to death in heart failure. Findings challenge current efforts to plan and deliver palliative care services on the basis of the theoretical heart failure dying trajectory.

Multifaceted implementation of stroke prevention guidelines in primary care: cluster-randomised evaluation of clinical and cost effectiveness.

OBJECTIVE: To evaluate clinical and cost effectiveness of implementing evidence-based guidelines for the prevention of stroke. DESIGN: Cluster-randomised trial SETTING: Three primary care organisations in the North of England covering a population of 400,000. PARTICIPANTS: Seventy six primary care teams in four clusters: North, South & West, City I and City II. INTERVENTION: Guidelines for the management of patients with atrial fibrillation and transient ischaemic attack (TIA) were developed and implemented using a multifaceted approach including evidence-based recommendations, audit and feedback, interactive educational sessions, patient prompts and outreach visits. OUTCOMES: Identification and appropriate treatment of patients with atrial fibrillation or TIA, and cost effectiveness. RESULTS: Implementation led to 36% increase (95% CI 4% to 78%) in diagnosis of atrial fibrillation, and improved treatment of TIA (odds ratio of complying with guidelines 1.8; 95% CI 1.1 to 2.8). Combined analysis of atrial fibrillation and TIA estimates that compliance was significantly greater (OR 1.46 95% CI 1.10 to 1.94) in the condition for which practices had received the implementation programme. The development and implementation of guidelines cost less than 1500 pounds per practice. The estimated costs per quality-adjusted life year gained by patients with atrial fibrillation or TIA were both less than 2000 pounds, very much less than the usual criterion for cost effectiveness. CONCLUSIONS: Implementation of evidence-based guidelines improved the quality of primary care for atrial fibrillation and TIA. The intervention was feasible and very cost effective. Key components of the model include contextual analysis, strong professional support, clear recommendations based on robust evidence, simplicity of adoption, good communication and use of established networks and opinion leaders.

Characteristics and views of family carers of older people with heart failure.

AIMS: to explore the characteristics and views of the family carers of older people with heart failure. METHOD: 213 family carers of heart failure patients >60 years were recruited from UK general practitioner (GP) practices. Carer strain, quality of life (QOL) and service satisfaction questionnaires were completed every 3 months for 2 years, as well as 16 interviews with patients and carers, and 9 focus groups with health care professionals. RESULTS: 76% of carers were female, 70% were >60 years and 73% were spousal carers. Predictors of carer strain were symptoms of depression, age and patient NYHA. Predictors of lower QOL were: spousal carer; 2+ health conditions and symptoms of depression. Qualitative findings related to the change in circumstances, impact of responsibilities and health conditions of the family carers. CONCLUSION: carers were mainly older women, often experiencing multiple health conditions. Addressing the practical and emotional support required presents a challenge for specialist palliative care in responding to calls for increased involvement in heart failure. A shared care model with liaison between specialist heart failure nurses, cardiologists, primary care teams and hospice services is advocated.

A cost effectiveness analysis within a randomised controlled trial of post-acute care of older people in a community hospital.

OBJECTIVE: To assess the cost effectiveness of post-acute care for older people in a locality based community hospital compared with a department for care of elderly people in a district general hospital, which admits patients aged over 76 years with acute medical conditions. DESIGN: Cost effectiveness analysis within a randomised controlled trial. SETTING: Community hospital and district general hospital in Yorkshire, England. PARTICIPANTS: 220 patients needing rehabilitation after an acute illness for which they required admission to hospital. INTERVENTIONS: Multidisciplinary care in the district general hospital or prompt transfer to the community hospital. MAIN OUTCOME MEASURES: EuroQol EQ-5D scores transformed into quality adjusted life years (QALYs), and health and social service costs over six months from randomisation. RESULTS: The mean QALY score for the community hospital group was marginally non-significantly higher than that for the district general hospital group (0.38 v 0.35) at six months after recruitment. The mean (standard deviation) costs per patient of the health and social services resources used were similar for both groups: community hospital group 7233 pounds sterling (euros 10,567; 13,341 dollars) (5031 pounds sterling), district general hospital group 7351 pounds sterling(6229 pounds sterling), and these findings were robust to several sensitivity analyses. The incremental cost effectiveness ratio for community hospital care dominated. A cost effectiveness acceptability curve, based on bootstrapped simulations, suggests that at a willingness to pay threshold of 10,000 pounds sterling per QALY, 51% of community hospital cases will be cost effective, which rises to 53% of cases when the threshold is 30,000 pounds sterling per QALY. CONCLUSION: Post-acute care for older people in a locality based community hospital is of similar cost effectiveness to that of an elderly care department in a district general hospital.

Predictors of the quality of life of older people with heart failure recruited from primary care.

BACKGROUND: Current understanding of quality of life in heart failure is largely derived from clinical trials. Older people, women and those with co-morbidities are underrepresented in these. Little is known about factors predictive of quality of life amongst older people with heart failure recruited from community settings. OBJECTIVE: To identify factors predictive of quality of life amongst older people recruited from community settings. DESIGN: prospective questionnaire survey. SETTING: General practice surgeries located in four areas of the UK: Bradford, Barnsley, East Devon and West Hampshire. SUBJECTS: A total of 542 people aged >60 years with heart failure. METHODS: Participants completed a postal questionnaire, which included a disease-specific measure (Kansas City Cardiomyopathy Questionnaire), a generic quality-of-life measure (SF-36) and sociodemographic information. RESULTS: A multiple linear regression analysis identified the following factors as predictive of decreased quality of life: being female, being in New York Heart Association (NYHA) functional class III or IV, showing evidence of depression, being in socioeconomic groups III-V and experiencing two or more co-morbidities. Older age was associated with decreased quality of life, as measured by a generic health-related quality-of-life tool (the SF-36 mental and physical health functioning scales) but not by a disease-specific tool (the Kansas City Cardiomyopathy Questionnaire). CONCLUSION: Findings from the study suggest that quality of life for older people with heart failure can be described as challenging and difficult, particularly for women, those in a high NYHA class, patients showing evidence of depression, patients in socioeconomic groups III-V, those experiencing two or more co-morbidities and the 'oldest old'. Such information can help clinicians working with older people identify those at risk of reduced quality of life and target interventions appropriately.

South Asians and epilepsy: exploring health experiences, needs and beliefs of communities in the north of England.

PURPOSE: To examine the beliefs and experiences of South Asians with epilepsy and the extent of provision of appropriate information and accessible services for them by health professionals. METHODS: Qualitative interviews with 30 South Asians with epilepsy, 16 carers and 10 health professionals. In addition, two focus groups were held with 16 South Asians without epilepsy recruited from community centers. The interview sample was divided by religious groupings (Hindus, Sikhs and Muslims). Fieldwork was conducted in Bradford and Leeds (England). RESULTS: Beliefs that epilepsy is caused by spirit possession (Muslims) or attributable to sins committed in a past life (Sikhs and Hindus) were reported as being widely held among South Asians living both in the UK and the Indian subcontinent, although few informants themselves subscribed to such views. Compliance with conventional medication was high; however, those who experienced seizures most often were most likely to turn to traditional South Asian therapies. Most informants used both treatments simultaneously. The main issues regarding the provision of services were: lack of appropriate information and advice; language and communication barriers; problems in interaction with health professionals. Also discussed were the potential merits of attending support groups. Greatest dissatisfaction was expressed in relation to primary care, whereas the highest praise was reserved for specialist epilepsy nurses. CONCLUSIONS: Our findings show both similarities and differences between participants' experiences, where gender, age or other aspects of personal biography can be as important as religion, culture or country of origin. Furthermore, the impact of being diagnosed with epilepsy can be exacerbated by structural impediments to accessing information and appropriate services.

A hermeneutic science: health economics and Habermas.

PURPOSE: Mainstream health economics labours under a misleading understanding of the nature of the topic area and suffers from a concomitant poverty of thinking about theory and method. The purpose here is to explore this critical position and argue that health economics should aspire to being more than a technical discipline. It can, and should, engage with transformative discourse. DESIGN/METHODOLOGY/APPROACH: It is argued that the hermeneutic sciences, emphasising interpretation not instrumentality or domination, offer a route into the change to which one seeks to contribute. The article specifically focuses on the way Habermas provides insights in his approach to knowledge, reason and political economy. How he emphasises complexity and interaction within cultural milieu is explored and primacy is given to preserving the life-world against the encroachments of a narrow rationalization. FINDINGS: The argument for a critical re-imagining of health economics is presented in three stages. First, the antecedents, current assumptions and critical voices from contemporary economics and health economics are reviewed. Second, the way in which health is best understood via engaging with the complexity of both the subject itself and the society and culture within which it is embedded is explored. Third, the contribution that hermeneutics, and Habermas' critical theory, could make to a new health economics is examined. ORIGINALITY/VALUE: The paper offers a radical alternative to health economics. It explores the shortcomings of current thinking and argues an optimistic position. Progress via reason is possible if one reframes both in the direction of communication and in the appreciation of reflexivity and communality. This is a position that resonates with many who challenge prevailing paradigms, in economics and elsewhere.