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.

Vulnerabilities in child well-being among primary school children: a cross-sectional study in Bradford, UK.

OBJECTIVE: To describe the prevalence of factors related to well-being among primary school children in a deprived multiethnic community in the UK. DESIGN AND PARTICIPANTS: Cross-sectional survey of 15 641 children aged 7-10 years in Born in Bradford's Primary School Years study: whole-classroom samples in 89 Bradford primary schools between 2016 and 2019. MAIN OUTCOME MEASURES: Prevalence estimates by ethnicity (%, 95% CI) of single and multiple vulnerabilities in child well-being within and across four domains (Home, Family, Relationships; Material Resources; Friends and School; Subjective Well-being). RESULTS: Only 10% of children had no vulnerabilities in any domain of well-being; 10% had one or more vulnerabilities in all four domains. The highest prevalence estimates were for being bullied some or all of the time (52.7%, 95% CI: 51.9% to 53.4%), keeping worries to oneself (31.2%, 95% CI: 30.5% to 31.9%), having no park near home (30.8%, 95% CI: 30.1% to 31.5%) and worrying all the time about how much money their family has (26.3%, 95% CI: 25.6% to 27%). Boys were consistently significantly more likely than girls to report all of the vulnerabilities in the Home, Family and Family Relationships domain, and the majority of indicators in the other domains, and in all domains except Friends and School, boys were significantly more likely to have at least one vulnerability. Girls were significantly more likely to report not having many friends (16.7%, 95% CI: 15.9% to 17.6% vs 12.5%, 95% CI: 11.8% to 13.2%), being bullied some or all of the time (55.8%, 95% CI: 54.7% to 56.9% vs 49.7%, 95% CI: 48.6% to 50.8%) and feeling left out all the time (12.1%, 95% CI: 11.4% to 12.8%) versus (10.3%, 95% CI: 9.7% to 11.0%). Variations in vulnerabilities by ethnicity were complex, with children in black, Asian and minority ethnic groups sometimes reporting more vulnerabilities and sometimes fewer than white British children. For example, compared with children of Pakistani heritage, white British children were more likely to say that their family never gets along well (6.3%, 95% CI: 5.6% to 7.1% vs 4.1%, 95% CI: 3.6% to 4.6%) and to have no access to the internet at home (22.3%, 95% CI: 21% to 23.6% vs 18%, 95% CI: 17% to 18.9%). Children with Pakistani heritage were more likely than white British children to say they had no park near their home where they can play with friends (32.7%, 95% CI: 31.6% to 33.9% vs 29.9%, 95% CI: 28.6% to 31.3%), to report not having three meals a day (17.9%, 95% CI: 16.9% to 18.8% vs 11.9%, 95% CI: 10.9% to 12.9%) and to worry all the time about how much money their families have (29.3%, 95% CI: 28.2% to 30.3%) vs (21.6%, 95% CI: 20.4% to 22.9%). Gypsy/Irish Traveller children were less likely than white British children to say they were bullied some or all of the time (42.2%, 95% CI: 35.4% to 49.4% vs 53.8%, 95% CI: 52.3% to 55.3%), but more likely to say they were mean to others all the time (9.9%, 95% CI: 6.3% to 15.2% vs 4%, 95% CI: 3.5% to 4.7%) and can never work out what to do when things are hard (15.2%, 95% CI: 10.6% to 21.2% vs 9%, 95% CI: 8.2% to 9.9%). We considered six vulnerabilities to be of particular concern during the COVID-19 pandemic and associated national and local lockdowns: family never gets along well together; no garden where child can play; no nearby park where they can play; not having three meals a day; no internet at home; worried about money all the time. Pre-pandemic, 37.4% (95% CI: 36.6% to 38.3%) of Bradford children had one of these vulnerabilities and a further 29.6% (95% CI: 28.9% to 30.4%) had more than one. CONCLUSIONS: Although most primary school children aged 7-10 in our study had good levels of well-being on most indicators across multiple domains, fewer than 10% had no vulnerabilities at all, a worrying 10% had at least one vulnerability in all the four domains we studied and two-thirds had vulnerabilities of particular concern during the COVID-19 lockdowns.

Born in Bradford Age of Wonder cohort: A protocol for qualitative longitudinal research.

Bradford is multi-ethnic and one of the most deprived districts in the United Kingdom where around a quarter of children live in low-income families. Born in Bradford (BiB) has followed the lives of 13,776 children born in the district between 2007 and 2011. Children in the birth cohort are now entering adolescence, and the next phase of the research - Age of Wonder (AoW) - will be a whole city cohort capturing the experiences of 30,000 adolescents progressing into young adulthood. This protocol focuses on one component of the AoW programme: qualitative longitudinal research (QLR). The study will gather in depth and detailed accounts from a sub-sample of 100 young people across four major research priorities: personal life; social and community life; growing up with difference, and growing up in Bradford. As well as using traditional qualitative methods such as interviews, focus group discussions, and ethnography, we are adopting innovative creative methods including expressions through art, activism, online and digital content, portraits, and critical events. The process of engaging in and co-producing QLR potentially provides a route to empowering young people to shape the narrative of their own lives as well as informing intervention development.

Fine-scale population structure and demographic history of British Pakistanis.

Previous genetic and public health research in the Pakistani population has focused on the role of consanguinity in increasing recessive disease risk, but little is known about its recent population history or the effects of endogamy. Here, we investigate fine-scale population structure, history and consanguinity patterns using genotype chip data from 2,200 British Pakistanis. We reveal strong recent population structure driven by the biraderi social stratification system. We find that all subgroups have had low recent effective population sizes (Ne), with some showing a decrease 15‒20 generations ago that has resulted in extensive identity-by-descent sharing and homozygosity, increasing the risk of recessive disorders. Our results from two orthogonal methods (one using machine learning and the other coalescent-based) suggest that the detailed reporting of parental relatedness for mothers in the cohort under-represents the true levels of consanguinity. These results demonstrate the impact of cultural practices on population structure and genomic diversity in Pakistanis, and have important implications for medical genetic studies.

An annotated and critical glossary of the terminology of inclusion in healthcare and health research.

The importance of including members of the public has been accorded a significant position in health planning, service delivery and research. But this position masks a lack of clarity about terms that are used. This paper identifies terms that are in common use in the lexicon of community based involvement and engagement in health with the intention of clarifying meaning and thus reducing ambiguity. We define and distinguish between key terms related to inclusion, we consider the terminology attached to community processes and to the challenges of inclusion and we engage with the strengths and weaknesses of the commonly used metaphor of "a ladder of participation". We wish to contribute to the clear communication of intentions, challenges and achievements in pursuing varied forms of inclusion in health.

The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis.

OBJECTIVES: Mothers of school age and older children with developmental disabilities experience poorer health than mothers of typically developing children. This review assesses the evidence for the effect on mothers' health of caring for young children with developmental disabilities, and the influence of different disability diagnoses and socioeconomic status. METHODS: Medline, EMBASE, PsycINFO and CINAHL were searched. Studies measuring at least one symptom, using a quantitative scale, in mothers of preschool children (0-5 years) with and without a diagnosed developmental disability were selected. Random effects meta-analysis was performed, and predictive intervals reported due to high expected heterogeneity. RESULTS: The meta-analysis included 23 estimates of association from 14 retrospective studies for the outcomes of stress (n = 11), depressive symptoms (n = 9), general health (n = 2) and fatigue (n = 1). Caring for a child with a developmental disability was associated with greater ill health (standardised mean difference 0.87; 95% predictive interval - 0.47, 2.22). The largest association was for mixed developmental disabilities (1.36; - 0.64, 3.36) and smallest for Down syndrome (0.38; - 2.17, 2.92). There was insufficient socioeconomic information to perform subgroup analysis. The small number of studies and data heterogeneity limited the precision of the estimates of association and generalizability of the findings. CONCLUSIONS FOR PRACTICE: Mothers of young children with developmental disabilities may have poorer health than those with typically developing children. Research is needed to identify whether the relationship is causal and, if so, interventions that could reduce the negative effect of caregiving.

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.

ActEarly: a City Collaboratory approach to early promotion of good health and wellbeing.

Economic, physical, built, cultural, learning, social and service environments have a profound effect on lifelong health. However, policy thinking about health research is dominated by the 'biomedical model' which promotes medicalisation and an emphasis on diagnosis and treatment at the expense of prevention. Prevention research has tended to focus on 'downstream' interventions that rely on individual behaviour change, frequently increasing inequalities. Preventive strategies often focus on isolated leverage points and are scattered across different settings. This paper describes a major new prevention research programme that aims to create City Collaboratory testbeds to support the identification, implementation and evaluation of upstream interventions within a whole system city setting. Prevention of physical and mental ill-health will come from the cumulative effect of multiple system-wide interventions. Rather than scatter these interventions across many settings and evaluate single outcomes, we will test their collective impact across multiple outcomes with the goal of achieving a tipping point for better health. Our focus is on early life (ActEarly) in recognition of childhood and adolescence being such critical periods for influencing lifelong health and wellbeing.

On Folk Devils, Moral Panics and New Wave Public Health.

New wave public health places an emphasis on exhorting individuals to engage in healthy behaviour with good health being a signifier of virtuous moral standing, whereas poor health is often associated with personal moral failings. In effect, the medical is increasingly being collapsed into the moral. This approach is consistent with other aspects of contemporary neoliberal governance, but it fuels moral panics and creates folk devils. We explore the implications and dysfunctional consequences of this new wave of public health policy in the context of the latest moral panic around obesity.

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.

Assessing community readiness for early intervention programmes to promote social and emotional health in children.

OBJECTIVE: Evidence for early intervention and prevention-based approaches for improving social and emotional health in young children is robust. However, rates of participation in programmes are low. We explored the dynamics which affect levels of community readiness to address the issues of social and emotional health for pregnant women, young children (0-4 years) and their mothers. SETTING: A deprived inner-city housing estate in the north of England. The estate falls within the catchment area of a project that has been awarded long-term funding to address social and emotional health during pregnancy and early childhood. METHODS: We interviewed key respondents using the Community Readiness Model. This approach applies a mixed methodology, incorporating readiness scores and qualitative data. A mean community readiness score was calculated enabling the placement of the community in one of nine possible stages of readiness. Interview transcripts were analysed using a qualitative framework approach to generate contextual information to augment the numerical scores. RESULTS: An overall score consistent with vague awareness was achieved, indicating a low level of community readiness for social and emotional health interventions. This score suggests that there will be a low likelihood of participation in programmes that address these issues. CONCLUSION: Gauging community readiness offers a way of predicting how willing and prepared a community is to address an issue. Modifying implementation plans so that they first address community readiness may improve participation rates.

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.

Exploring the Potential for Secondary uses of Dementia Care Mapping (DCM) Data for Improving the Quality of Dementia Care.

The reuse of existing datasets to identify mechanisms for improving healthcare quality has been widely encouraged. There has been limited application within dementia care. Dementia Care Mapping is an observational tool in widespread use, predominantly to assess and improve quality of care in single organisations. Dementia Care Mapping data have the potential to be used for secondary purposes to improve quality of care. However, its suitability for such use requires careful evaluation. This study conducted in-depth interviews with 29 Dementia Care Mapping users to identify issues, concerns and challenges regarding the secondary use of Dementia Care Mapping data. Data were analysed using modified Grounded Theory. Major themes identified included the need to collect complimentary contextual data in addition to Dementia Care Mapping data, to reassure users regarding ethical issues associated with storage and reuse of care related data and the need to assess and specify data quality for any data that might be available for secondary analysis.

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.

Hidden hunger? Experiences of food insecurity amongst Pakistani and white British women.

PURPOSE: Foodbank use in the UK is rising but, despite high levels of poverty, Pakistani women are less likely to use food banks than white British women. The purpose of this paper is to understand the lived experience of food in the context of poverty amongst Pakistani and white British women in Bradford, including perspectives on food aid. DESIGN/METHODOLOGY/APPROACH: A total of 16 Pakistani and white British women, recruited through community initiatives, participated in three focus groups (one interview was also held as a consequence of recruitment difficulties). Each group met for two hours aided by a moderator and professional interpreter. The transcripts were analysed thematically using a three-stage process. FINDINGS: Women in low-income households employed dual strategies to reconcile caring responsibilities and financial obligations: the first sought to make ends meet within household income; the second looked to outside sources of support. There was a reported near absence of food insecurity amongst Pakistani women which could be attributed to support from social/familial networks, resource management within the household, and cultural and religious frameworks. A minority of participants and no Pakistani respondents accessed charitable food aid. There were three reasons for the non-use of food aid: it was not required because of resource management strategies within the household and assistance from familial/social networks; it was avoided out of shame; and knowledge about its existence was poor. ORIGINALITY/VALUE: This case study is the first examination of varying experiences of food insecurity amongst UK white British and Pakistani women. Whilst the sample size is small, it presents new evidence on perceptions of food insecurity amongst Pakistani households and on why households of varying ethnicities do not use food aid.

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.

General practitioners' perceptions of the stigma of dementia and the role of reciprocity.

A qualitative exploration of the stigma of dementia reported that general practitioners described lack of reciprocity as one way in which people with dementia are perceived within society. This was closely linked to their perception of dementia as a stigma. In this article, we explore whether general practitioners perceive people with dementia as lacking reciprocity and, if so, if this is linked with societal opinions about dementia as a stigma. The implications of both perceptions of people with dementia failing to reciprocate and of stigma for timely diagnosis are explored. Our approach is to follow the thread of reciprocity in the data from our initial study. In this follow-up study, general practitioners' perceptions of societal views of people with dementia included a perception of a lack of reciprocity specifically linked with; failing to respond to human contact, the absence of an appropriate return on social investment and failing to contribute to, or being a burden on, society. General practitioners reported a link between societal perceptions of lack of reciprocity and stereotypes about advanced dementia, difficulties communicating with people with dementia, and lack of opportunities for people with dementia to reciprocate. General practitioners occupy a key position, they can challenge stereotypes and, with support and targeted training about communicating with people living with dementia, can emphasize the ways in which people with dementia can communicate, thereby enhancing their potential to reciprocate. Such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood.