NIHRDataInsights/HRCSData huggingface dataset:
Title: Gaining a real-time understanding of breastfeeding experience using an innovative mobile app
Funder: The British Academy

Abstract: Despite widespread promotion that ‘Breast is Best’, breastfeeding rates remain low, particularly in the UK. Public health messaging, by presenting breastfeeding as ‘natural’, ‘easy’ and ‘good,’ may be underpreparing women for the challenges of breastfeeding, as well as marginalising and stigmatising those who struggle to breastfeed or choose alternative methods of infant feeding. This messaging, we suggest, creates additional barriers to breastfeeding. However, we currently lack large scale, quantitative data able to untangle cause from effect; a reliance on retrospective methodologies has impeded understanding of how prior expectations interact with women’s real-time experiences that ultimately influence infant feeding decisions. We will address prior methodological limitations by developing and piloting an innovative mobile application (app), to collect daily data on women’s infant feeding experiences and decisions. The app will allow mothers to track their own feeding journeys, whilst facilitating exploration of breastfeeding narratives and feeding behaviour in unprecedented depth.


Research activity codes: 3.1 PRIMARY PREVENTION INTERVENTIONS TO MODIFY BEHAVIOURS OR PROMOTE WELL-BEING
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Regulating Assisted Gestative Technologies: An investigation into future legislation in England and Wales
Funder: The British Academy

Abstract: Technologies assisting gestation - the process between conception and birth - will change the way human life is created, and who/what is responsible for the labour involved. However, the regulatory framework in England and Wales is poorly equipped to deal with developments like uterus transplantation and artificial wombs. Plans are currently afoot to reform the law surrounding surrogacy. It is timely to consider how far other emerging technologies might be accommodated in revised regulation, and we must do so to ensure that potential users of technology – women, potential parents, and resulting children – are adequately supported/protected. Through a focus group and workshop, this project will investigate the legal problems arising from technology-assisted gestation, and interrogate the regulatory gaps exposing individuals to harm. To the debate about regulation of assisted reproduction my approach brings a new focus, and my methods bring new voices and due attention to lived experience.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Abortion, reproductive freedom, and sexual and reproductive health and rights: lessons from El Salvador
Funder: The British Academy

Abstract: International human rights law (IHRL) recognises that criminalising abortion results in human rights violations. However, abortion is criminalised in El Salvador, and those suspected of having abortions are prosecuted. In response, Salvadoran feminists are making use of the language and mechanisms of IHRL to advance their claims for decriminalising abortion. This research project will explore the benefits and risks of this feminist engagement with IHRL. It will engage with Salvadoran feminists, transnational feminist and human rights organisations, and inter-American and UN human rights experts. These stakeholders will reflect on the opportunities and obstacles that IHRL presents for advancing abortion access and reproductive freedom. Funding will support a Visiting Researcher position in the USA in summer 2022 to conduct this research. Outputs will include academic publications and a policy document on abortion in IHRL for use by national governments, health systems, and human rights and equality bodies.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Improving maternal health in Africa: Exploring how gendered practices shape the legitimation process of informal healthcare providers (IMHELP)
Funder: The British Academy

Abstract: Maternal health remains a serious challenge in Africa. Despite a remarkable decline in global maternal mortality in the last decade, the continent accounts for more than half of the world's maternal death rate. In many countries on the continent, governments have been unable to develop functioning health systems to address maternal healthcare challenges. Thus, operators of informal healthcare firms emerge, thrive and persist in such settings to provide product and service offerings that seek to address gaps in the formal health systems. Despite their crucial roles, management research that explores the organisational forms and governance mechanisms of firms of informal health providers remains less developed. The IMHELP project seeks to advance our understanding of how gender practices shape the legitimation process of these firms and their effect on the provision of quality maternal care in rural Ghana. It further seeks to identify and discuss theoretical and policy implications.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Saying goodbye is so hard, but she lives on in our memories - Parents' experiences of perinatal palliative care
Funder: The British Academy

Abstract: Background: Over 2000 babies are born each year. in the United Kingdom, who will not survive the first 28 days of life. Care provision varies, with some families cared for in the neonatal unit, whilst others referred to palliative care networks. To date, there has been no evaluation of the impact of the offer of palliative care on families. Aims: To explore the perceptions and experiences of parents and carers of babies requiring palliative care. In particular, the impact of early engagement with and care provision from a children’s hospice will be explored. Methods: A qualitative study approached will be applied. In depth, semi structured interviews will be undertaken with parents and carers of babies who have been supported by palliative care teams in a hospice setting. Conclusion: The findings will provide the first insight into the impact of care provision within the palliative care setting.


Research activity codes: 7.2 END OF LIFE CARE
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Falling between the cracks: conscientious objection to abortion
Funder: The British Academy

Abstract: Invoking conscientious objection (CO) to abortion in clinical practice often becomes the centre of debate. Confusion abounds amongst nurses, midwives, pharmacists and doctors regarding their understanding of CO and the extent to which they can object to abortion on conscience grounds. It impacts negatively on both objecting and non-objecting healthcare professionals, the organisations in which they practise and service users. A national picture of health professionals’ understanding of CO to abortion is urgently required, thus we have developed an online questionnaire using findings from our previous qualitative study. Our output will be the first known validated questionnaire on CO in the world which can thereafter be administered to a large UK based sample of health practitioners. Questionnaire results can then be used to develop national guidelines for health professionals on CO to abortion and can be used to contribute to governments seeking to amend the Abortion Act.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Bringing up baby: Investigating change and continuity in early life-course experiences and health for fetal-infant individuals from archaeological and historical populations in Britain.
Funder: The British Academy

Abstract: The very earliest moments of our lives are frequently acknowledged as the most fundamental to our longevity and success. Today, investigations into the impact of poverty, maternal well-being and sociocultural practices on fetal-infant development and health have demonstrated the fragility of the early life-course. Yet our understanding of this brief but vital period, and the factors that impact it, is severely lacking for past populations. With fetal-infant individuals commonly overlooked in our investigations and narratives of the past, this project will be the first to examine relationships between fetal-infant survival, health, and the social worlds in which they were born and nurtured. Assessing individuals from geographically and temporally diverse populations, this research will investigate fetal-infant mortality, morbidity, and sociocultural treatment, exploring change and continuity in these early life-course experiences between populations. Through skeletal and funerary analysis, this project will establish a comprehensive narrative of fetal-infant life in Britain through


Research activity codes: 1.1 NORMAL BIOLOGICAL DEVELOPMENT AND FUNCTIONING;1.2 PSYCHOLOGICAL AND SOCIOECONOMIC PROCESSES
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Dignity without danger: collaboratively analysing stigma and taboos to develop innovative strategies to address menstrual exclusion in Nepal
Funder: The British Academy

Abstract: Women and girls in Nepal lack basic rights to a dignified menstruation. This means that they suffer inhumane and degrading treatment which includes abuse and violence (SDG3,5,6). Exclusionary practices, stigmas and taboos around menstruation, underpinned by traditional beliefs and cultural heritage practices, prevent women and girls from fully participating in economic and social life, impacting negatively on school attendance and employment (SDG4,8). This project focuses on Nepalese women and girls’ rights to menstrual dignity. Working with existing local partners, we will utilise creative ethnographic methods, supported by training, in seven diverse districts in Nepal. We will build research capacity of academic and non-governmental organisations. By exploring and connecting disparate stories, artefacts and narratives, we will deepen understanding enabling local stakeholders to challenge exclusionary practices. This will directly impact on current initiatives to enable women and girls accessing their rights to reproductive health, dignity and enhance sustainable human development (SDG3.7,17).


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Haemodynamic and autonomic nervous system (CHANS) function during and after pregnancy
Funder: Division for Social Care and Health Research (Wales)

Abstract: Whilst we understand much about the health benefits of physical exercise in the non-pregnant population, its influence during pregnancy has not been clearly demonstrated. The focus of this proposal is to obtain for the first time a comprehensive understanding of the influence of regular physical exercise during pregnancy on cardiovascular, haemodynamic and autonomic nervous system (CHANS) parameters during pregnancy and following childbirth. This study will allow us to compare CHANS parameters in pregnant women who are randomly assigned into three groups: a ‘standard care’ group and two groups who engage in a supervised programme of physical exercise (either land-based or water-based). We will assess CHANS parameters at three stages during pregnancy and on one occasion following childbirth. This will allow the influence of regular (weekly) physical exercise on CHANS physiology to be assessed during advancing gestation. We thereby hope to provide initial evidence of the health benefits of regular and specific forms of antenatal physical exercise, for which there are currently no official UK guidelines. Eligible participants will be pregnant women aged 18 years or over who are apparently healthy and have no complications of pregnancy at initial evaluation. The research will take place at Singleton Hospital, Swansea. The study will be part of our established collaboration between Swansea University and ABM University NHS Trust, involving a team of senior clinicians and academic researchers. Participants will be recruited at the time of their first routine scan and we will monitor CHANS parameters at 10-12, 24-28 and 34-36 weeks gestational age, and at 12 weeks following childbirth. Monitoring will be non-invasive and we will quantify CHANS function from the data obtained using methods that we have previously developed. We will organise supervised group exercise sessions involving one of two protocols (randomly assigned to participants): either an ‘aqua aerobics’ class (aerobic water-based activities such as walking and jogging with various arm actions) or an aerobics class on land (stepping activities performed with guidance from a Nintendo Wii fit games console). Exercise sessions will consist of a 10 minute warm up followed by 30 minutes of light-to-moderate intensity physical activity, on 3 days each week throughout pregnancy.


Research activity codes: 6.7 PHYSICAL
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Women's situated reasoning on emerging Non-Invasive Prenatal Diagnosis technologies (NIPD)
Funder: Division for Social Care and Health Research (Wales)

Abstract: This study will explore women's reasoning on the issues raised by emerging Non Invasive Prenatal Diagnosis (NIPD) technologies. It will highlight the under-represented voices of service users, who make concrete practical decisions without the time or resources for comprehensive debate. It will also help map the social impact of an emerging technology. NIPD is poised to have a profound impact upon antenatal screening and diagnosis within the NHS. Rapid progress has resulted in the development of certain specific diagnostic tests, and it is expected that ongoing progress will further expand the technology's clinical scope. The clinical application of NIPD has been described as 'desirable' and it is recommended that the technology should be fully supported within the UK. NIPD is distinct from current prenatal technologies because it is both diagnostic and non-invasive, and produces results at an earlier stage of pregnancy. This distinct nature prompts this study's central research questions: How do women respond to the technological promise of NIPD? How do women imagine NIPD will alter experiences of pregnancy? Themes such as reproductive autonomy, medical paternalism, genetic determinism, abortion, eugenics, female embodiment, equity of access to healthcare, and the rights of people with disabilities will be central to analysis.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Effectiveness and Cost-effectiveness of Levonorgestrel containing Intrauterine system in Primary care against Standard trEatment - The ECLIPSE Trial
Funder: Department of Health (England)

Abstract: 1.Previous trials show that Mirena is more effective than standard medical treatment in reducing the amount of menstrual blood loss in the short term but have not addressed quality of life or longer-term outcomes. We therefore propose a RCT by intention to treat to evaluate the effects of Mirena versus standard medical treatment (based on RCOG guidelines) over the longer term and in the primary care setting.2.The project will measure patient centred and surgical outcomes over the patient journey along with resource use in primary and secondary care over time.3.The project will model the utilisation and costs of the different intended treatments on the basis of these data. We will thereby be able to confirm or refute the hypothesis that treatment of menorrhagia with Mirena in primary care results in gain for patient and health services in the short and long-term compared to standard medical treatment.4.Extensive sensitivity analysis will be conducted to explore the robustness of the results to the assumptions made. The use of a modelling approach provides the flexibility to readily incorporate new data within the existing analysis as such data become available.


Research activity codes: 6.3 MEDICAL DEVICES
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: Rapid, non-invasive tests for acute bacterial infections based on pathogen-specific 'immune fingerprints'
Funder: Division for Social Care and Health Research (Wales)

Abstract: The spread of resistant germs ("superbugs") makes it increasingly difficult to treat infections with existing drugs. Effective treatment is further hampered by the poor performance of current diagnostics including traditional microbiology and molecular techniques (DNA tests), as these are slow, expensive, and do not distinguish asymptomatic carriers and contamination from true infection. Doctors therefore are often forced to prescribe antibiotics on clinical grounds alone, resulting in many patients receiving treatments that are inappropriate, unnecessary or not in time. The new approach we are developing is a radical departure from the current practice that could change the face of infection management world-wide. We have shown that the presence and type of the infection determines the clinical course, and that different germs stimulate different parts of a patient's immune system, leaving what we call specific "immune fingerprints". We have already identified certain parameters within these fingerprints that allow us to predict the nature of the germs causing disease on the day of presentation, i.e. 2-3 days before existing techniques. In this project, the "immune fingerprint" principle is to be applied in urology/nephrology and primary care, where there are major unmet needs for tests that can detect the first stages of infection, before microbes have become firmly established and entrenched. In particular, we are focussing on infections in peritoneal dialysis patients (peritonitis) and in the urinary tract of otherwise healthy people who fall victim to bladder or kidney infections. Current methods for these conditions are woefully inadequate. These data will inform the design of a laboratory method for rapid diagnosis leading to a simple test that can be used by a GP, at the bedside, or at home, and that will effect a step-change in current patient management, rapidly ensuring the right treatment is given to each patient and helping contain drug resistance.


Research activity codes: 4.1 DISCOVERY AND PRECLINICAL TESTING OF MARKERS AND TECHNOLOGIES
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: European study of Neonatal exposure to Excipients (ESNEE)/Priomedchild Call/ERA-Net
Funder: Medical Research Council

Abstract: Excipents are chemicals added to medicines to improve their quality. Sporadic reports indicate that some may be toxic for neonates and lead to significant morbidity or death. However, there is insufficient information about the risks generated by excipient exposure because systematic surveys have not been done and studies on babies have not been ethical in the past. Recent advances allow determination of excipient levels in very small blood volumes (50 microlitre) including dry blood spot methods and estimates of excipient exposures based on only 2-4 samples per baby. Hypothesis 1: information about exposures across the EU will promote reduction of neonatal exposure to excipients by highlighting opportunities for product substitution and priorities for reformulation.|Hypothesis 2: small volume blood samples can be used to generate models of systemic excipient exposure. Our consortium comprises researchers from Estonia, France and the UK with extensive experience in all aspects of the study. We will develop a platform of techniques to assess excipient exposure including: a questionnaire and point prevalence study of neonatal excipient exposure; systematic reviews of relevant literature; dried blood spot assays for high impact excipients; a cohort study to construct population excipient kinetic models (EK, analogous to active drug pharmacokinetics or PK) for high impact excipients. This work will lead to recommendations for the European Medicines Agency and other stakeholders about assessment of excipient exposure and underpin future work to relate exposures to outcomes.|


Research activity codes: 6.1 PHARMACEUTICALS
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH
Title: A randomised controlled trial of the 'Health in Early Feeding Scheme' to improve breastfeeding in neighbourhoods with low 6 week breastfeeding rates
Funder: Medical Research Council

Abstract: The overall purpose of this three stage study is to evaluate the clinical and cost effectiveness of the Health in Early Feeding Scheme (HEFS) designed to increase the prevalence of breastfeeding in neighbourhoods with low 6 week breastfeeding rates. Prior to the first stage half the neighbourhoods will be randomly selected to the experimental intervention (Offer of HEFS). The first stage (A) aims to develop the intervention. Focus groups with pregnant /post partum women from Offer neighbourhoods will provide preliminary ideas on key components of the interention. To estimate the optimum size of payments a discrete choice experiment will be conducted with pregnant and post partum mothers,. In order to finalise the key components of the intervention NGT workshops will be held with healthcare professionals and healthcare funders and commissioners. The second stage (B) of the study will test the feasibility (acceptability and deliverability) of the intervention and obtain estimates of key parameters necessary for the main trial. This will be achieved by piloting the intervention in two neighbourhoods in the Offer Group for a period of 3 months (with 6-8 weeks post partum follow up). This stage will also seek to understand the accuracy and variability of both routine data and additional relevant resource use data for this sample at both a cluster and individual level. The third (C) stage of this study evaluates the clinical and cost effectiveness of the intervention using a cluster (neighbourhood based) randomised controlled trial design with a mixed methods process/context evaluation. The intervention will be delivered to all neighbourhoods in the Offer Group for a duration of one year (with 6 months follow up). The results of the Offer Group and No Offer Group will be compared and the variability of the effectiveness of the intervention between cluster neighbourhoods using cluster-level process and context data


Research activity codes: 3.1 PRIMARY PREVENTION INTERVENTIONS TO MODIFY BEHAVIOURS OR PROMOTE WELL-BEING
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH