Meta-evaluation of a whole systems programme, ActEarly: A study protocol.

INTRODUCTION: Living in an area with high levels of child poverty predisposes children to poorer mental and physical health. ActEarly is a 5-year research programme that comprises a large number of interventions (>20) with citizen science and co-production embedded. It aims to improve the health and well-being of children and families living in two areas of the UK with high levels of deprivation; Bradford in West Yorkshire, and the London Borough of Tower Hamlets. This protocol outlines the meta-evaluation (an evaluation of evaluations) of the ActEarly programme from a systems perspective, where individual interventions are viewed as events in the wider policy system across the two geographical areas. It includes investigating the programme's impact on early life health and well-being outcomes, interdisciplinary prevention research collaboration and capacity building, and local and national decision making. METHODS: The ActEarly meta-evaluation will follow and adapt the five iterative stages of the 'Evaluation of Programmes in Complex Adaptive Systems' (ENCOMPASS) framework for evaluation of public health programmes in complex adaptive systems. Theory-based and mixed-methods approaches will be used to investigate the fidelity of the ActEarly research programme, and whether, why and how ActEarly contributes to changes in the policy system, and whether alternative explanations can be ruled out. Ripple effects and systems mapping will be used to explore the relationships between interventions and their outcomes, and the degree to which the ActEarly programme encouraged interdisciplinary and prevention research collaboration as intended. A computer simulation model ("LifeSim") will also be used to evaluate the scale of the potential long-term benefits of cross-sectoral action to tackle the financial, educational and health disadvantages faced by children in Bradford and Tower Hamlets. Together, these approaches will be used to evaluate ActEarly's dynamic programme outputs at different system levels and measure the programme's system changes on early life health and well-being. DISCUSSION: This meta-evaluation protocol presents our plans for using and adapting the ENCOMPASS framework to evaluate the system-wide impact of the early life health and well-being programme, ActEarly. Due to the collaborative and non-linear nature of the work, we reserve the option to change and query some of our evaluation choices based on the feedback we receive from stakeholders to ensure that our evaluation remains relevant and fit for purpose.

'It's tough. It is hard': A qualitative interview study of staff and volunteers caring for hospice in-patients with delirium.

BACKGROUND: Delirium is a distressing condition often experienced by hospice in-patients. Increased understanding of current multidisciplinary care of delirium is needed to develop interventions in this setting. AIM(S): To explore hospice staff and volunteers' practice, its influences and what may need to change to improve hospice delirium care. DESIGN: Qualitative interview study using behaviour change theory from a critical realist stance. SETTING/PARTICIPANTS: Thirty-seven staff, including different professional groups and roles, and volunteers were purposively sampled from two in-patient hospices. RESULTS: We found that participants' practice focus was on managing hyperactive symptoms of delirium, through medication use and non-pharmacological strategies. Delirium prevention, early recognition and hypoactive delirium received less attention. Our theoretically-informed analysis identified this focus was influenced by staff and volunteers' emotional responses to the distress associated with hyperactive symptoms of delirium as well as understanding of delirium prevention, recognition and care, which varied between staff groups. Non-pharmacological delirium management was supported by adequate staffing levels, supportive team working and a culture of person-centred and family-centred care, although behaviours that disrupted the calm hospice environment challenged this. CONCLUSIONS: Our findings can inform hospice-tailored behaviour change interventions that develop a shared team understanding and engage staff's emotional responses to improve delirium care. Reflective learning opportunities are needed that increase understanding of the potential to reduce patient distress through prevention and early recognition of delirium, as well as person-centred management. Organisational support for adequate, flexible staffing levels and supportive team working is required to support person-centred delirium care.

Connected Bradford: a Whole System Data Linkage Accelerator.

The richness of linked population data provides exciting opportunities to understand local health needs, identify and predict those in most need of support and evaluate health interventions. There has been extensive investment to unlock the potential of clinical data for health research in the UK. However, most of the determinants of our health are social, economic, education, environmental, housing, food systems and are influenced by local authorities. The Connected Bradford Whole System Data Linkage Accelerator was set up to link health, education, social care, environmental and other local government data to drive learning health systems, prevention and population health management. Data spanning a period of over forty years has been linked for 800,000 individuals using the pseudonymised NHS number and other data variables. This prospective data collection captures near real time activity. This paper describes the dataset and our Connected Bradford Whole System Data Accelerator Framework that covers public engagement; practitioner and policy integration; legal and ethical approvals; information governance; technicalities of data linkage; data curation and guardianship; data validity and visualisation.

A review of the effectiveness and experiences of welfare advice services co-located in health settings: A critical narrative systematic review.

We conducted a narrative systematic review to assess the health, social and financial impacts of co-located welfare services in the UK and to explore the effectiveness of and facilitators and barriers to successful implementation of these services, in order to guide future policy and practice. We searched Medline, EMBASE and other literature sources, from January 2010 to November 2020, for literature examining the impact of co-located welfare services in the UK on any outcome. The review identified 14 studies employing a range of study designs, including: one non-randomised controlled trial; one pilot randomised controlled trial; one before-and-after-study; three qualitative studies; and eight case studies. A theory of change model, developed a priori, was used as an analytical framework against which to map the evidence on how the services work, why and for whom. All studies demonstrated improved financial security for participants, generating an average of £27 of social, economic and environmental return per £1 invested. Some studies reported improved mental health for individuals accessing services. Several studies attributed subjective improvements in physical health to the service addressing key social determinants of health. Benefits to the health service were also demonstrated through reduced workload for healthcare professionals. Key components of a successful service included co-production during service development and ongoing enhanced multi-disciplinary collaboration. Overall, this review demonstrates improved financial security for participants and for the first time models the wider health and welfare benefits for participants and for health service from these services. However, given the generally poor scientific quality of the studies, care must be taken in drawing firm conclusions. There remains a need for more high quality research, using experimental methods and larger sample sizes, to further build upon this evidence base and to measure the strength of the proposed theoretical pathways in this area.

'When will this end? Will it end?' The impact of the March-June 2020 UK COVID-19 lockdown response on mental health: a longitudinal survey of mothers in the Born in Bradford study.

OBJECTIVES: To explore clinically important increases in depression/anxiety from before to during the first UK COVID-19 lockdown and factors related to this change, with a particular focus on ethnic differences. DESIGN: Pre-COVID-19 and lockdown surveys nested within two longitudinal Born in Bradford cohort studies. PARTICIPANTS: 1860 mothers with a child aged 0-5 or 9-13, 48% Pakistani heritage. MAIN OUTCOME MEASURES: ORs for a clinically important increase (5 points or more) in depression (eight item Patient Health Questionnaire (PHQ-8)) and anxiety (Generalised Anxiety Disorder Assessment (GAD-7)) in unadjusted regression analyses, repeated with exposures of interest separated by ethnicity to look for differences in magnitude of associations, and lived experience of mothers captured in open text questions. RESULTS: The number of women reporting clinically important depression/anxiety increased from 11% to 20% (95% CI 10%-13%; 18%-22%) and from 10% to 16% (95% CI 8%-11%; 15%-18%), respectively. Increases in depression/anxiety were associated with loneliness (OR=8.37, 95% CI 5.70 to 12.27; 8.50, 95% CI 5.71 to 12.65, respectively); financial (6.23, 95% CI 3.96 to 9.80; 6.03, 95% CI 3.82 to 9.51), food (3.33, 95% CI 2.09 to 5.28; 3.46, 95% CI 2.15 to 5.58) and housing insecurity (3.29, 95% CI 2.36 to 4.58; 3.0, 95% CI 2.11 to 4.25); a lack of physical activity (3.13, 95% CI 2.15 to 4.56; 2.55, 95% CI 1.72 to 3.78); and a poor partner relationship (3.6, 95% CI 2.44 to 5.43; 5.1, 95% CI 3.37 to 7.62). The magnitude of associations between key exposures and worsening mental health varied between ethnic groups.Responses to open text questions illustrated a complex interplay of challenges contributing to mental ill health including: acute health anxieties; the mental load of managing multiple responsibilities; loss of social support and coping strategies; pressures of financial and employment insecurity; and being unable to switch off from the pandemic. CONCLUSIONS: Mental ill health has worsened for many during the COVID-19 lockdown, particularly in those who are lonely and economically insecure. The magnitude of associations between key exposures and worsening mental health varied between ethnic groups. Mental health problems may have longer term consequences for public health and interventions that address the potential causes are needed.

Risk factors for delirium in adult patients receiving specialist palliative care: A systematic review and meta-analysis.

BACKGROUND: Delirium is common and distressing for patients receiving palliative care. Interventions targetting modifiable risk factors in other settings have been shown to prevent delirium. Research on delirium risk factors in palliative care can inform context-specific risk-reduction interventions. AIM: To investigate risk factors for the development of delirium in adult patients receiving specialist palliative care. DESIGN: Systematic review and meta-analysis (PROSPERO CRD42019157168). DATA SOURCES: CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE and PsycINFO (1980-2021) were searched for studies reporting the association of risk factors with delirium incidence/prevalence for patients receiving specialist palliative care. Study risk of bias and certainty of evidence for each risk factor were assessed. RESULTS: Of 28 included studies, 16 conducted only univariate analysis, 12 conducted multivariate analysis. The evidence for delirium risk factors was limited with low to very low certainty. POTENTIALLY MODIFIABLE RISK FACTORS: Opioids and lower performance status were positively associated with delirium, with some evidence also for dehydration, hypoxaemia, sleep disturbance, liver dysfunction and infection. Mixed, or very limited, evidence was found for some factors targetted in multicomponent prevention interventions: sensory impairments, mobility, catheter use, polypharmacy (single study), pain, constipation, nutrition (mixed evidence). NON-MODIFIABLE RISK FACTORS: Older age, male sex, primary brain cancer or brain metastases and lung cancer were positively associated with delirium. CONCLUSIONS: Findings may usefully inform interventions to reduce delirium risk but more high quality prospective cohort studies are required to enable greater certainty about associations of different risk factors with delirium during specialist palliative care.

Performance of the Hull Salford Cambridge Decision Rule (HSC DR) for early discharge of patients with findings on CT scan of the brain: a CENTER-TBI validation study.

BACKGROUND: There is international variation in hospital admission practices for patients with mild traumatic brain injury (TBI) and injuries on CT scan. Only a small proportion of patients require neurosurgical intervention, while many guidelines recommend routine admission of all patients. We aim to validate the Hull Salford Cambridge Decision Rule (HSC DR) and the Brain Injury Guidelines (BIG) criteria to select low-risk patients for discharge from the emergency department. METHOD: A cohort from 18 countries of Glasgow Coma Scale 13-15 patients with injuries on CT imaging was identified from the multicentre Collaborative European NeuroTrauma Effectiveness Research in TBI (CENTER-TBI) Study (conducted from 2014 to 2017) for secondary analysis. A composite outcome measure encompassing need for ongoing hospital admission was used, including seizure activity, death, intubation, neurosurgical intervention and neurological deterioration. We assessed the performance of our previously derived prognostic model, the HSC DR and the BIG criteria at predicting deterioration in this validation cohort. RESULTS: Among 1047 patients meeting the inclusion criteria, 267 (26%) deteriorated. Our prognostic model achieved a C-statistic of 0.81 (95% CI: 0.78 to 0.84). The HSC DR achieved a sensitivity of 100% (95% CI: 97% to 100%) and specificity of only 4.7% (95% CI: 3.3% to 6.5%) for deterioration. Using the BIG criteria for discharge from the ED achieved a higher specificity (13.3%, 95% CI: 10.9% to 16.1%) and lower sensitivity (94.6%, 95% CI: 90.5% to 97%), with 12/105 patients recommended for discharge subsequently deteriorating, compared with 0/34 with the HSC DR. CONCLUSION: Our decision rule would have allowed 3.5% of patients to be discharged, none of whom would have deteriorated. Use of the BIG criteria may select patients for discharge who have too high a risk of subsequent deterioration to be used clinically. Further validation and implementation studies are required to support use in clinical practice.

Ethnicity, pre-existing comorbidities, and outcomes of hospitalised patients with COVID-19.

Background: The coronavirus disease 2019 (COVID-19) pandemic has resulted in thousands of deaths in the UK. Those with existing comorbidities and minority ethnic groups have been found to be at increased risk of mortality. We wished to determine if there were any differences in intensive care unit (ICU) admission and 30-day hospital mortality in a city with high levels of deprivation and a large community of people of South Asian heritage.  Methods: Detailed information on 622 COVID-19-positive inpatients in Bradford and Calderdale between February-August 2020 were extracted from Electronic Health Records. Logistic regression and Cox proportional hazards models were used to explore the relationship between ethnicity with admission to ICU and 30-day mortality, respectively accounting for the effect of demographic and clinical confounders. Results: The sample consisted of 408 (70%) White, 142 (24%) South Asian and 32 (6%) other minority ethnic patients. Ethnic minority patients were younger, more likely to live in deprived areas, and be overweight/obese, have type 2 diabetes, hypertension and asthma compared to white patients, but were less likely to have cancer (South Asian patients only) and COPD. Male and obese patients were more likely to be admitted to ICU, and patients of South Asian ethnicity, older age, and those with cancer were less likely. Being male, older age, deprivation, obesity, and cancer were associated with 30-day mortality. The risk of death in South Asian patients was the same as in white patients HR 1.03 (0.58, 1.82). Conclusions: Despite South Asian patients being less likely to be admitted to ICU and having a higher prevalence of diabetes and obesity, there was no difference in the risk of death compared to white patients. This contrasts with other findings and highlights the value of studies of communities which may have different ethnic, deprivation and clinical risk profiles.

Understanding COVID-19 misinformation and vaccine hesitancy in context: Findings from a qualitative study involving citizens in Bradford, UK.

BACKGROUND: COVID-19 vaccines can offer a route out of the pandemic, yet initial research suggests that many are unwilling to be vaccinated. A rise in the spread of misinformation is thought to have played a significant role in vaccine hesitancy. To maximize uptake, it is important to understand why misinformation has been able to take hold at this time and why it may pose a more significant problem within certain contexts. OBJECTIVE: To understand people's COVID-19 beliefs, their interactions with (mis)information during COVID-19 and attitudes towards a COVID-19 vaccine. DESIGN AND PARTICIPANTS: Bradford, UK, was chosen as the study site to provide evidence to local decision makers. In-depth phone interviews were carried out with 20 people from different ethnic groups and areas of Bradford during Autumn 2020. Reflexive thematic analysis was conducted. RESULTS: Participants discussed a wide range of COVID-19 misinformation they had encountered, resulting in confusion, distress and mistrust. Vaccine hesitancy could be attributed to three prominent factors: safety concerns, negative stories and personal knowledge. The more confused, distressed and mistrusting participants felt about their social worlds during the pandemic, the less positive they were about a vaccine. CONCLUSIONS: COVID-19 vaccine hesitancy needs to be understood in the context of the relationship between the spread of misinformation and associated emotional reactions. Vaccine programmes should provide a focused, localized and empathetic response to counter misinformation. PATIENT OR PUBLIC CONTRIBUTION: A rapid community and stakeholder engagement process was undertaken to identify COVID-19 priority topics important to Bradford citizens and decision makers.

The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis.

BACKGROUND: Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting. AIM: To understand patient, family, clinicians' and volunteers' experience of delirium and its care in palliative care contexts. DESIGN: Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417). DATA SOURCES: The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000-2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers. RESULTS: A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high (n = 5), medium (n = 8) or low (n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians' responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care. CONCLUSIONS: Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients' multi-dimensional needs to be met.

Health of mothers of children with a life-limiting condition: a comparative cohort study.

OBJECTIVE: This study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition. METHODS: Comparative national longitudinal cohort study using linked primary and secondary care data from the Clinical Practice Research Datalink in England. Maternal-child dyads were identified in these data. Maternal physical and mental health outcomes were identified in the primary and secondary care datasets using previously developed diagnostic coding frameworks. Incidence rates of the outcomes were modelled using Poisson regression, adjusting for deprivation, ethnicity and age and accounting for time at risk. RESULTS: A total of 35 683 mothers; 8950 had a child with a life-limiting condition, 8868 had a child with a chronic condition and 17 865 had a child with no long-term condition.The adjusted incidence rates of all of the physical and mental health conditions were significantly higher in the mothers of children with a life-limiting condition when compared with those mothers with a child with no long-term condition (eg, depression: incidence rate ratio (IRR) 1.21, 95% CI 1.13 to 1.30; cardiovascular disease: IRR 1.73, 95% CI 1.27 to 2.36; death in mothers: IRR 1.59, 95% CI 1.16 to 2.18). CONCLUSION: This study clearly demonstrates the higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition. Further research is required to understand how best to support these mothers, but healthcare providers should consider how they can target this population to provide preventative and treatment services.

External validation of the Dutch prediction model for prehospital triage of trauma patients in South West region of England, United Kingdom.

IMPORTANCE: This paper investigates the use of a major trauma prediction model in the UK setting. We demonstrate that application of this model could reduce the number of patients with major trauma being incorrectly sent to non-specialist hospitals. However, more research is needed to reduce over-triage and unnecessary transfer to Major Trauma Centres. OBJECTIVE: To externally validate the Dutch prediction model for identifying major trauma in a large unselected prehospital population of injured patients in England. DESIGN: External validation using a retrospective cohort of injured patients who ambulance crews transported to hospitals. SETTING: South West region of England. PARTICIPANTS: All patients ≥16 years with a suspected injury and transported by ambulance in the year from February 1, 2017. EXCLUSION CRITERIA: 1) Patients aged ≤15 years; 2) Non-ambulance attendance at hospital with injuries; 3) Death at the scene and; 4) Patients conveyed by helicopter. This study had a census sample of cases available to us over a one year period. INTERVENTIONS OR EXPOSURES: Tested the accuracy of the prediction model in terms of discrimination, calibration, clinical usefulness, sensitivity and specificity and under- and over triage rates compared to usual triage practices in the South West region. MAIN OUTCOME MEASURE: Major trauma defined as an Injury Severity Score>15. RESULTS: A total of 68799 adult patients were included in the external validation cohort. The median age of patients was 72 (i.q.r. 46-84); 55.5% were female; and 524 (0.8%) had an Injury Severity Score>15. The model achieved good discrimination with a C-Statistic 0.75 (95% CI, 0.73 - 0.78). The maximal specificity of 50% and sensitivity of 83% suggests the model could improve undertriage rates at the expense of increased overtriage rates compared with routine trauma triage methods used in the South West, England. CONCLUSIONS AND RELEVANCE: The Dutch prediction model for identifying major trauma could lower the undertriage rate to 17%, however it would increase the overtriage rate to 50% in this United Kingdom cohort. Further prospective research is needed to determine whether the model can be practically implemented by paramedics and is cost-effective.

Developing a model for health determinants research within local government: lessons from a large, urban local authority.

Background: Socio-economic, cultural and environmental conditions strongly affect health across the life course. Local government plays a key role in influencing these wider determinants of health and levels of inequality within their communities. However, they lack the research infrastructure and culture that would enable them to develop an evidence-based approach to tackling the complex drivers of those conditions. Methods: We undertook a scoping project to explore the potential for, and what would be needed to develop a local authority research system for the City of Bradford, UK. This included identifying the current research landscape and any barriers and enablers to research activity within the local authority using qualitative individual and focus group interviews, a rapid review of existing local research system models, scoping of the use of evidence in decision making and training opportunities and existing support for local government research. Results: We identified four key themes important to developing and sustaining a research system: leadership, resource and capacity, culture, partnerships. Some use of research in decision making was evident but research training opportunities within the local authority were limited. Health research funders are slowly adapting to the local government environment, but this remains limited and more work is needed to shift the centre of gravity towards public health, local government and the community more generally.  Conclusions: We propose a model for a local authority research system that can guide the development of an exemplar whole system research framework that includes research infrastructure, data sharing, research training and skills, and co-production with local partners, to choose, use, generate, and deliver research in local government.

COVID-19 vaccine hesitancy in an ethnically diverse community: descriptive findings from the Born in Bradford study.

Background: The roll out of coronavirus disease 2019 (COVID-19) vaccines are underway in the UK, and ensuring good uptake in vulnerable communities will be critical to reducing hospital admissions and deaths. There is emerging evidence that vaccine hesitancy is higher in ethnic minorities and deprived areas, and that this may be caused by distrust and misinformation in the community. This study aims to understand COVID-19 vaccine hesitancy in an ethnically diverse and deprived population of Bradford through the Born in Bradford (BiB) research programme. Methods: Surveys were sent to parents in BiB who had taken part in a previous Covid-19 survey (n=1727). Cross tabulations explored variation by ethnicity and deprivation. Answers to a question asking the main reason for hesitancy was analysed using thematic analysis. Results: 535 (31%) of those invited between 29 th October-9 th December 2020 participated. 48% were White British, 37% Pakistani heritage and 15% from other ethnicities; 46% were from the most deprived quintile of the Index of Multiple Deprivation. 29% of respondents do want a vaccine, 10% do not. The majority had not thought about it (29%) or were unsure (30%). Vaccine hesitancy differed by ethnicity and deprivation: 43% (95% CIs: 37-54%) of White British and 60% (35-81%) in the least deprived areas do want a vaccine, compared to 13% (9-19%) of Pakistani heritage and 20% (15-26%) in the most deprived areas. Reasons for not wanting a vaccine were commonly explained by confusion and distrust which was linked to exposure to misinformation. Conclusions: There is a risk of unequitable roll out of the vaccination programme in the UK with higher vaccine hesitancy in ethnic minorities and those living in deprived areas. There is an urgent need to tackle misinformation that is leading to uncertainty and confusion about the vaccines.

The Born in Bradford COVID-19 Research Study: Protocol for an adaptive mixed methods research study to gather actionable intelligence on the impact of COVID-19 on health inequalities amongst families living in Bradford.

The UK COVID-19 lockdown has included restricting social movement and interaction to slow the spread of disease and reduce demand on NHS acute services. It is likely that the impacts of restrictions will hit the least advantaged disproportionately and will worsen existing structural inequalities amongst deprived and ethnic minority groups. The aim of this study is to deliver rapid intelligence to enable an effective COVID-19 response, including co-production of interventions, that address key issues in the City of Bradford, UK, and nationally. In the longer term we aim to understand the impacts of the response on health trajectories and inequalities in these. In this paper we describe our approach and protocol. We plan an adaptive longitudinal mixed methods approach embedded with Born in Bradford (BiB) birth cohorts which have rich existing data (including questionnaire, routine health and biobank). All work packages (WP) interact and are ongoing. WP1 uses co-production and engagement methods with communities, decision-makers and researchers to continuously set (changing) research priorities and will, longer-term, co-produce interventions to aid the City's recovery. In WP2 repeated quantitative surveys will be administered during lockdown (April-June 2020), with three repeat surveys until 12 months post-lockdown with an ethnically diverse pool of BiB participants (parents, children aged 9-13 years, pregnant women: total sample pool N=7,652, N=5,154, N=1,800). A range of health, social, economic and education outcomes will be assessed. In WP3 priority topics identified in WP1 and WP2 will be explored qualitatively. Initial priority topics include children's mental wellbeing, health beliefs and the peri/post-natal period. Feedback loops will ensure findings are fed directly to decision-makers and communities (via WP1) to enable co-production of acceptable interventions and identify future priority topic areas. Findings will be used to aid development of local and national policy to support recovery from the pandemic and minimise health inequalities.

Health of mothers of children with a life-limiting condition: a protocol for comparative cohort study using the Clinical Practice Research Datalink.

INTRODUCTION: There are now nearly 50 000 children with a life-limiting or life-threatening condition in the UK. These include conditions where there is no reasonable hope of cure and from which they will die, as well as conditions for which curative treatment may be feasible but can fail, for example, cancer or heart failure. Having a child with a life-limiting condition involves being a coordinator and provider of healthcare in addition to the responsibilities and pressures of parenting a child who is expected to die young. This adversely affects the health and well-being of these mothers and affects their ability to care for their child, but the extent of the impact is poorly understood.This study aims to quantify the incidence and nature of mental and physical morbidity in mothers of children with a life-limiting condition, their healthcare use and to assess whether there is a relationship between the health of the mother and the child's condition. METHODS AND ANALYSIS: A comparative cohort study using data from the Clinical Practice Research Datalink and linked hospital data will include three groups of children and their mothers (those with a life-limiting condition, those with a chronic condition and those with no long-term health condition total=20 000 mother-child dyads). Incidence rates and incidence rate ratios will be used to quantify and compare the outcomes between groups with multivariable regression modelling used to assess the relationship between the child's disease trajectory and mother's health. ETHICS AND DISSEMINATION: This study protocol has approval from the Independent Scientific Advisory Committee for the UK Medicines and Healthcare products Regulatory Agency Database Research. The results of this study will be reported according to the STROBE and RECORD guidelines. There will also be a lay summary for parents which will be available to download from the Martin House Research Centre website (www.york.ac.uk/mhrc).

COVID-19 in-patient hospital mortality by ethnicity.

There is debate about the extent to which COVID-19 affects ethnic groups differently. We explored if there was variation in hospital mortality in patients with COVID. Mortality rates in 1,276 inpatients in Bradford with test results for COVID-19 were analysed by ethnic group. The age-adjusted risk of dying from COVID-19 was slightly lower in South Asian compared to White British patients. (RR =0.87, 95% CI: 0.41 to 1.84).

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.