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BACKGROUND: Uncertainty around the risk of COVID-19 to pregnant women and their babies prompted precautionary restrictions on their health and care during the pandemic. Maternity services had to adapt to changing Government guidance. Coupled with the imposition of national lockdowns in England and restrictions on daily activities, women's experiences of pregnancy, childbirth and the postpartum period, and their access to services, changed rapidly. This study was designed to understand women's experiences of pregnancy, labour and childbirth and caring for a baby during this time. METHODS: This was an inductive longitudinal qualitative study, using in-depth interviews by telephone with women in Bradford, UK, at three timepoints during their maternity journey (18 women at timepoint one, 13 at timepoint two and 14 at timepoint three). Key topics explored were physical and mental wellbeing, experience of healthcare services, relationships with partners and general impact of the pandemic. Data were analysed using the Framework approach. A longitudinal synthesis identified over-arching themes. RESULTS: Three longitudinal themes captured what was important to women: (1) women feared being alone at critical points in their maternity journey, (2) the pandemic created new norms for maternity services and women's care, and (3) finding ways to navigate the COVID-19 pandemic in pregnancy and with a baby. CONCLUSIONS: Modifications to maternity services impacted significantly on women's experiences. The findings have informed national and local decisions about how best to direct resources to reduce the impact of COVID-19 restrictions and the longer-term psychological impact on women during pregnancy and postnatally.
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COVID-19 , Servicios de Salud Materna , Femenino , Embarazo , Humanos , Pandemias , COVID-19/epidemiología , Control de Enfermedades Transmisibles , Parto , Mujeres Embarazadas/psicología , Investigación Cualitativa , PadresRESUMEN
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.
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Desarrollo Infantil , Servicios de Salud del Niño/organización & administración , Redes Comunitarias/organización & administración , Promoción de la Salud/normas , Salud Pública , Preescolar , Inglaterra , Humanos , Lactante , Recién Nacido , Pobreza , Garantía de la Calidad de Atención de Salud , InvestigadoresRESUMEN
BACKGROUND: The national newborn bloodspot screening programs (NBSPs) are continually expanding to screen for more conditions. OBJECTIVES: To quantify parents' preferences for information and the way in which this is provided in example NBSPs. METHODS: A hybrid choice experiment, combining a conjoint analysis and a discrete choice experiment, was designed. A sample of current and future parents between the ages of 18 and 45 years was identified via an Internet panel. Respondents completed one of two survey versions (9 conditions and 20 conditions) comprising a validated measure of attitudes toward involvement in decision making, 6 CA questions (11 information attributes), 10 DCE questions (4 attributes: 3 process and the ability to make an informed decision), and demographic questions. RESULTS: Of the 702 respondents who completed the survey, 58% were women, 48% were between 25 and 34 years old, and 48% were current parents. All types of information were identified to statistically significantly improve parents' ability to make a decision. Participants preferred taking an "active" role in decision making. Respondents to the 9-condition survey preferred information before 20 weeks (willingness to pay [WTP] £11.88; CI £5.56 to £19.53) and the 20-condition group after 20 weeks (WTP £15.91; CI £10.64 to £21.63). All respondents disliked receiving information 3 days after birth, with the 20-condition group also being averse to receiving it on day 5 (WTP -£11.20; CI -£18.40 to 5.72). Respondents in both groups preferred to receive their information in an individual discussion. CONCLUSIONS: This study suggests that parents' preferences for receiving NBS information differ from how this information is given in current UK practice.
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Comportamiento del Consumidor , Información de Salud al Consumidor , Pruebas con Sangre Seca , Conocimientos, Actitudes y Práctica en Salud , Tamizaje Neonatal/métodos , Padres/psicología , Adolescente , Adulto , Conducta de Elección , Femenino , Humanos , Recién Nacido , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Reino Unido , Adulto JovenRESUMEN
BACKGROUND: Health partnerships often use health professional training to change practice with the aim of improving quality of care. Interventions to change practice can learn from behavioural science and focus not only on improving the competence and capability of health professionals but also their opportunity and motivation to make changes in practice. We describe a project that used behavioural scientist volunteers to enable health partnerships to understand and use the theories, techniques and assessments of behavioural science. CASE STUDIES: This paper outlines how The Change Exchange, a collective of volunteer behavioural scientists, worked with health partnerships to strengthen their projects by translating behavioural science in situ. We describe three case studies in which behavioural scientists, embedded in health partnerships in Uganda, Sierra Leone and Mozambique, explored the behaviour change techniques used by educators, supported knowledge and skill development in behaviour change, monitored the impact of projects on psychological determinants of behaviour and made recommendations for future project developments. DISCUSSION: Challenges in the work included having time and space for behavioural science in already very busy health partnership schedules and the difficulties in using certain methods in other cultures. Future work could explore other modes of translation and further develop methods to make them more culturally applicable. CONCLUSION: Behavioural scientists could translate behavioural science which was understood and used by the health partnerships to strengthen their project work.
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Ciencias de la Conducta , Investigación Biomédica Traslacional , Ciencias de la Conducta/métodos , Personal de Salud , Investigación sobre Servicios de Salud , Humanos , Motivación , Mozambique , Sierra Leona , UgandaRESUMEN
BACKGROUND: Ethnic and socio-economic inequalities have been reported in the uptake of colorectal cancer (CRC) screening. This study aimed to explore the factors affecting CRC screening participation in an ethnically and socio-economically diverse inner city population. METHODS: Semi-structured interviews were undertaken with 50 people aged 55-74 years, recruited from GP practices in south-east London. Participants were from Black African (n=13), Black Caribbean (n=15), White British (n=17), Black other (n=2) and White other (n=3) backgrounds. Participants' socio-economic status (SES) was assessed using a combined measure of educational attainment, housing tenure and car ownership. Participants' SES varied although there were more participants from less deprived backgrounds than those from more deprived backgrounds. The interview topic guide was informed by the Theoretical Domains Framework. Interviews were recorded, transcribed and analysed using framework analysis. FINDINGS: Lack of awareness of CRC screening was a barrier for all participants. There were also some notable group differences by ethnicity and SES. Cancer fear was a barrier for White British participants of varying SES. Misunderstanding instructions for completing the guaiac faecal occult blood test (gFOBt) was a barrier for people of low SES regardless of ethnicity. For Black African and Black Caribbean participants, of any SES, religious faith and a perceived civic duty to participate in screening encouraged participation. DISCUSSION AND CONCLUSIONS: This is the first study to provide detailed information on the separate views of Black African and Black Caribbean participants about screening. Consideration of ethnicity and SES together also allowed us to identify pertinent barriers for particular groups that can be targeted to improve access to screening for those who wish to take part.
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Neoplasias Colorrectales/diagnóstico , Detección Precoz del Cáncer/psicología , Etnicidad/estadística & datos numéricos , Factores Socioeconómicos , Población Urbana , Anciano , Neoplasias Colorrectales/etnología , Etnicidad/psicología , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Londres , Masculino , Persona de Mediana Edad , Sangre Oculta , Investigación CualitativaRESUMEN
Objective: High quality obstetric anaesthetic care is integral to reducing preventable maternal deaths in Low-and-Middle-Income-Countries (LMICs). We applied behavioural science to evaluate SAFE Obstetrics, a 3-day Continuing Professional Development (CPD) course, on physician and non-physician anaesthetists' practice behaviours across 3 LMICs.Methods: Seven anaesthetist Fellows from Bangladesh, Nepal and Tanzania were trained in qualitative methods and behavioural science. Structured interviews were undertaken by Fellows and two UK behavioural scientists with course participants. Interviews were based on the Theoretical Domains Framework: a comprehensive framework of influences on behaviour change. Interviews were recorded, transcribed and analysed using content and thematic analysis.Results: 78 physician and non-physician anaesthetists participated (n = 26 Bangladesh, n = 24 Nepal and n = 28 Tanzania). Participants reported positive improvements in patient-centered working, safety, teamwork and confidence. Across countries, we found similar barriers and facilitators: environmental resources, a strong professional identity and positive social influences were key facilitators of change.Conclusion: This multi-country theory-based evaluation highlighted the impact of SAFE Obstetrics on participants' clinical practice. A supportive work environment was crucial for implementing learning following training; CPD courses in LMICs must furnish participants with skills and equipment to address training implementation challenges. Building local behavioural science capacity can strengthen LMIC health intervention evaluations.
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PURPOSE: In the United Kingdom, cross-cultural adaptation of questionnaires would allow for inclusivity in assessment in cancer clinics for non-English speakers. The aim was to translate the Social Difficulties Inventory (SDI-21) into Urdu, Punjabi and Hindi and undertake preliminary evaluation of translated versions. METHODS: The study comprised three stages: (1) translation/back translation and evaluation of cultural equivalence of the SDI-21, (2) south Asian (SA) patient evaluation of SDI-21 translations and (3) evaluation using Rasch analysis comparing English and Urdu SDI-21 from data pooled from this and three other studies. RESULTS: Forward/backward translation resulted in minor amendments particularly in forward translation of SDI-21(Hindi). The majority of the 55 patients interviewed found the SDI-21 acceptable and clear, resulting in no amendments (all versions). Rasch analysis demonstrated good fit. Differential item functioning (DIF) was found for one item, in the comparison of white English (WE)- and SA Urdu-speaking groups. Detailed DIF analysis comparing self-completion and read-aloud administration by language group demonstrated this DIF only held for the comparison between SA English speakers (self-completion) and SA Urdu (read out). CONCLUSIONS: Translated versions are culturally and linguistically acceptable. The SDI-21 (Urdu) performs similarly to the English version when self-completed.
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Aculturación , Lenguaje , Encuestas y Cuestionarios/normas , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Asia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/etnología , Neoplasias/fisiopatología , Neoplasias/psicología , Reino Unido , Adulto JovenRESUMEN
INTRODUCTION: Implementation evaluations are integral to understanding whether, how and why interventions work. However, unpicking the mechanisms of complex interventions is often challenging in usual service settings where multiple services are delivered concurrently. Furthermore, many locally developed and/or adapted interventions have not undergone any evaluation, thus limiting the evidence base available. Born in Bradford's Better Start cohort is evaluating the impact of multiple early life interventions being delivered as part of the Big Lottery Fund's 'A Better Start' programme to improve the health and well-being of children living in one of the most socially and ethnically diverse areas of the UK. In this paper, we outline our evaluation framework and protocol for embedding pragmatic implementation evaluation across multiple early years interventions and services. METHODS AND ANALYSIS: The evaluation framework is based on a modified version of The Conceptual Framework for Implementation Fidelity. Using qualitative and quantitative methods, our evaluation framework incorporates semistructured interviews, focus groups, routinely collected data and questionnaires. We will explore factors related to content, delivery and reach of interventions at both individual and wider community levels. Potential moderating factors impacting intervention success such as participants' satisfaction, strategies to facilitate implementation, quality of delivery and context will also be examined. Interview and focus guides will be based on the Theoretical Domains Framework to further explore the barriers and facilitators of implementation. Descriptive statistics will be employed to analyse the routinely collected quantitative data and thematic analysis will be used to analyse qualitative data. ETHICS AND DISSEMINATION: The Health Research Authority (HRA) has confirmed our implementation evaluations do not require review by an NHS Research Ethics Committee (HRA decision 60/88/81). Findings will be shared widely to aid commissioning decisions and will also be disseminated through peer-reviewed journals, summary reports, conferences and community newsletters.
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BACKGROUND: Problems with oral language skills in childhood have been linked with poor educational, employment, and mental health outcomes. In the UK, there is increasing concern about the oral language skills of children, particularly children from areas of social disadvantage. Research emphasises the importance of the home language environment as a fundamental bedrock for the development of oral language skills. It is vital, therefore, that support is available to help families in need to provide the optimal language environment for their child. Talking Together is a 6-week home visiting programme recently commissioned by Better Start Bradford to develop parents' knowledge of the importance of a good language environment and help to improve parent-child interactions. This study represents the initial steps in developing a definitive trial of the Talking Together programme. METHOD: This study is a two-arm randomised controlled feasibility study in which families referred into the Talking Together programme and consent to participate in the trial will be randomly allocated to either an intervention group or a waiting control group. We will assess the recruitment and retention rates, the representativeness of our sample, the appropriateness of our measures, and the sample size needed for a definitive trial. We will also carry out a qualitative evaluation to explore the acceptability of trial procedures for families and service providers, fidelity of delivery, time and resources for training, and barriers and facilitators to engagement with the programme. Clear progression criteria will be used to assess suitability for a definitive trial. CONCLUSION: This feasibility study will inform the development of a definitive trial of this home-based visiting programme, which will add to the sparse evidence base on which practitioners can draw when supporting families in need. The lessons learnt from this feasibility study will also inform the wider evaluation work of the Better Start Bradford Innovation Hub. TRIAL REGISTRATION: The trial is registered with the ISRCTN registry: study ID ISRCTN13251954. Date of registration: 21 February 2019 (the trial was retrospectively registered).
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Background: Understanding preferences for information provision in the context of health care service provision is challenging because of the number of potential attributes that may influence preferences. This study aimed to identify midwives' preferences for the process and outcomes of information provision in an expanded national newborn bloodspot screening program. Design: A sample of practicing midwives completed a hybrid-stated preference survey including a conjoint analysis (CA) and discrete choice experiment to quantify preferences for the types of, and way in which, information should be provided in a newborn bloodspot screening program. Six conjoint analysis questions captured the impact of different types of information on parents' ability to make a decision, and 10 discrete choice experiment questions identified preferences for four process attributes (including parents' ability to make a decision). Results: Midwives employed by the UK National Health Service (n = 134) completed the survey. All types of information content were perceived to improve parents' ability to make a decision except for the possibility of false-positive results. Late pregnancy was seen to be the best time to provide information, followed by day 3 postbirth. Information before 20 weeks of pregnancy was viewed as reducing parents' ability to make a decision. Midwives preferred information to be provided by an individual discussion and did not think parents should receive information on the Internet. Conclusion: A hybrid stated preference survey design identified that a wide variety of information should be provided to maximize parents' ability to make a decision ideally provided late in pregnancy or on day 3 postbirth.
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BACKGROUND: Participation in the UK Newborn Bloodspot Screening Programme (NBSP) requires parental consent but concerns exist about whether or not this happens in practice and the best methods and timing to obtain consent at reasonable cost. OBJECTIVES: To collate all possible modes of prescreening communication and consent for newborn (neonatal) screening (NBS); examine midwives', screening professionals' and users' views about the feasibility, efficiency and impact on understanding of each; measure midwives' and parents' preferences for information provision; and identify key drivers of cost-effectiveness for alternative modes of information provision. DESIGN: Six study designs were used: (1) realist review - to generate alternative communication and consent models; (2) qualitative interviews with parents and health professionals - to examine the implications of current practice for understanding and views on alternative models; (3) survey and observation of midwives - to establish current costs; (4) stated preference surveys with midwives, parents and potential future parents - to establish preferences for information provision; (5) economic analysis - to identify cost-effectiveness drivers of alternative models; and (6) stakeholder validation focus groups and interviews - to examine the acceptability, views and broader impact of alternative communication and consent models. SETTING: Providers and users of NBS in England. PARTICIPANTS: Study 2: 45 parents and 37 health professionals; study 3: 22 midwives and eight observations; study 4: 705 adults aged 18-45 years and 134 midwives; and study 6: 12 health-care professionals and five parents. RESULTS: The realist review identified low parental knowledge and evidence of coercive consent practices. Interview, focus group and stated preference data suggested a preference for full information, with some valuing this more than choice. Health professionals preferred informed choice models but parents and health professionals queried whether or not current consent was fully informed. Barriers to using leaflets effectively were highlighted. All studies indicated that a 'personalised' approach to NBS communication, allowing parents to select the mode and level of information suited to their learning needs, could have added value. A personalised approach should rely on midwife communication and should occur in the third trimester. Overall awareness was identified as requiring improvement. Starting NBS communication by alerting parents that they have a choice to make and telling them that samples could be stored are both likely to enhance engagement. The methods of information provision and maternal anxiety causing additional visits to health-care professionals were the drivers of relative cost-effectiveness. Lack of data to populate an economic analysis, confirmed by value of information analysis, indicated a need for further research. LIMITATIONS: There are some limitations with regard to the range of participants used in studies 2 and 3 and so caution should be exercised when interpreting some of the results. CONCLUSIONS: This project highlighted the importance of focusing on information receipt and identified key communication barriers. Health professionals strongly preferred informed consent, which parents endorsed if they were made aware of sample storage. Uniform models of information provision were perceived as ineffective. A choice of information provision was supported by health professionals and parents, which both enhances cost-effectiveness and improves engagement, understanding and the validity of consent. Remaining uncertainties suggest that more research is needed before new communication modes are introduced into practice. Future research should measure the impact of the suggested practice changes (informing in third trimester, information toolkits, changed role of midwife). TRIAL REGISTRATION: Current Controlled Trials ISRCTN70227207. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 55. See the NIHR Journals Library website for further project information.
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Difusión de la Información , Consentimiento Informado , Tamizaje Neonatal/métodos , Adulto , Análisis Costo-Beneficio/economía , Inglaterra , Femenino , Personal de Salud/ética , Humanos , Recién Nacido , Masculino , Padres/educación , Embarazo , Proyectos de Investigación , Encuestas y Cuestionarios , Factores de TiempoRESUMEN
BACKGROUND: The extent to which economic evaluations have included the healthcare resource and outcome-related implications of information provision in national newborn bloodspot screening programmes (NBSPs) is not currently known. OBJECTIVES: To identify if, and how, information provision has been incorporated into published economic evaluations of NBSPs. METHODS: A systematic review of economic evaluations of NBSPs (up to November 2014) was conducted. Three electronic databases were searched (Ovid: Medline, Embase, CINAHL) using an electronic search strategy combining a published economic search filter with terms related to national NBSPs and screening-related technologies. These electronic searches were supplemented by searching the NHS Economic Evaluations Database (NHS EED) and hand-searching identified study reference lists. The results were tabulated and summarised as part of a narrative synthesis. RESULTS: A total of 27 economic evaluations [screening-related technologies (n = 11) and NBSPs (n = 16)] were identified. The majority of economic evaluations did not quantify the impact of information provision in terms of healthcare costs or outcomes. Five studies did include an estimate of the time cost associated with information provision. Four studies included a value to reflect the disutility associated with parental anxiety caused by false-positive results, which was used as a proxy for the impact of imperfect information. CONCLUSION: A limited evidence base currently quantifies the impact of information provision on the healthcare costs and impact on the users of NBSPs; the parents of newborns. We suggest that economic evaluations of expanded NBSPs need to take account of information provision otherwise the impact on healthcare costs and the outcomes for newborns and their parents may be underestimated.
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Análisis Costo-Beneficio , Sangre Fetal , Tamizaje Neonatal/economía , Evaluación de la Tecnología Biomédica/economía , Humanos , Recién NacidoRESUMEN
OBJECTIVES: To evaluate, in a sample of patients of South Asian (SA) origin, the acceptability of introducing assessment of social difficulties in everyday practice, examine the range and severity of reported social difficulties and inquire about their management. DESIGN: A cross-sectional study in which participants completed the Social Difficulties Inventory (SDI-21) in English, Urdu, Punjabi or Hindi followed by a semi-structured interview. PARTICIPANTS: Participants comprised 26 men and 29 women of SA origin ranging between 18 and 80 years of age. The commonest primary languages were Urdu (n=17) and Punjabi (n=17). English was the primary language of three participants. A range of cancer diagnoses and stages of disease were represented. SETTING: Patients were recruited from outpatient haematology and oncology clinics in Bradford, Airedale and Leeds hospitals. RESULTS: SA cancer patients welcomed routine assessment of social difficulties as part of their cancer care. They reported higher levels of social distress than found in earlier studies of white British patients. The majority managed their social difficulties themselves with little discussion with the clinical team, although, at times, this would have been welcomed. SA patients lacked information and were unaware of the support available to them, especially when language was a barrier. CONCLUSIONS: Introduction of routine assessment of social difficulties into cancer care will require not only relevant and accessible screening tools such as the SDI-21, but also staff trained to respond to the difficulties disclosed, with knowledge of information sources and supportive care services when patients request these.