Mary Seacole: global nurse extraordinaire.

AIMS: A discussion of recently discovered literature that reveals how after the Crimean War ended in 1856, Jamaican nurse, doctress and entrepreneur Mary Seacole travelled more widely and gained further international recognition than had previously been appreciated. BACKGROUND: New findings demonstrate that Seacole's international charitable and business activities were reported more widely than realised. Recently discovered literature uncovers her networking and strategic skills in various social milieus. A former Scutari nurse and 39 other women, offered their service to Seacole to nurse British soldiers in India. Newspapers also reported the medal she had been awarded from the Turkish government. DESIGN: Discussion paper. DATA SOURCES: Digitized 19th-century newspaper reports, and 1857 Dutch and 1858 French translations of Seacole's autobiography and a recently discovered handwritten letter dated 1 October 1857 from Seacole to Sir Henry Storks, at the time Secretary for Military Correspondence at the War Office, London. IMPLICATIONS FOR NURSING: Awareness of the findings affords a more thorough understanding of the scope and diversity of nursing history. This can provide valuable role models for the 21st century generations of competent and self-confident healthcare professionals. The new evidence offers further testimony that Seacole can truly be considered as one such figurehead. CONCLUSIONS: British and international primary sources reveal Mary Seacole as an historical and charismatic global phenomenon, more than had been previously realised.

Modeling the complex activity of sickle cell and thalassemia specialist nurses in England.

OBJECTIVE: Specialist advanced practice nursing in hemoglobinopathies has a rich historical and descriptive literature. Subsequent work has shown that the role is valued by patients and families and also by other professionals. However, there is little empirical research on the complexity of activity of these services in terms of interventions offered. In addition, the work of clinical nurse specialists in England has been devalued through a perception of oversimplification. PURPOSE: The purpose of this study was to understand the complexity of expert nursing practice in sickle cell and thalassemia. DESIGN: The approach taken to modeling complexity was used from common methods in mathematical modeling and computational mathematics. Knowledge discovery through data was the underpinning framework used in this study using a priori mined data. This allowed categorization of activity and articulation of complexity. RESULT: In total, 8966 nursing events were captured over 1639 hours from a total of 22.8 whole time equivalents, and several data sources were mined. The work of specialist nurses in this area is complex in terms of the physical and psychosocial care they provide. The nurses also undertook case management activity such as utilizing a very large network of professionals, and others participated in admission avoidance work and education of patients' families and other staff. CONCLUSION: The work of nurses specializing in hemoglobinopathy care is complex and multidimensional and is likely to contribute to the quality of care in a cost-effective way. An understanding of this complexity can be used as an underpinning to establishing key performance indicators, optimum caseload calculations, and economic evaluation.

Effectiveness of earlier antenatal screening for sickle cell disease and thalassaemia in primary care: cluster randomised trial.

OBJECTIVE: To evaluate the effectiveness of offering antenatal screening for sickle cell disease and thalassaemia in primary care as a way of facilitating earlier uptake of screening. DESIGN: Partial factorial cluster randomised controlled trial. SETTING: 25 UK general practices from deprived inner city areas. PARTICIPANTS: Anonymised data on all pregnant women attending participating practices during a six month period before randomisation and a seven month period after randomisation. This included 1708 eligible women. INTERVENTION: Practices were randomised to three groups for seven months: parallel testing in general practice (tests for sickle cell disease and thalassaemia offered to both parents when pregnancy was first reported); sequential testing in general practice (tests offered to mothers when pregnancy was first reported, and subsequently to the partners of women who were found to be carriers); and midwife care (tests offered to mothers at first consultation with a midwife). MAIN OUTCOME MEASURES: The primary outcome (available for all women) was the proportion of eligible women screened before 10 weeks' (70 days') gestation. Secondary outcomes were an offer of screening to women before 10 weeks' gestation, gestational age at testing, mean interval from first visit to the general practice visit to screening, and women's knowledge of the carrier status of their baby's father before 77 days' (11 weeks') gestation. The study was designed to detect a 20% absolute increase in screening uptake. Cluster level analyses were adjusted for age group, parity, ethnic group, primary care organisation, and number of general practitioners per practice. RESULTS: Data were analysed for 1708 eligible women. In the midwife care arm, 2% (9/441) of women were screened before 10 weeks' gestation compared with 24% (161/677) in the GP parallel testing arm and 28% (167/590) in the GP sequential testing arm. The estimated adjusted difference between the midwife care and GP parallel testing arms was 16.5% (95% confidence interval 7.1% to 25.8%; P=0.002) and between the midwife care and GP sequential testing arms was 27.8% (14.8% to 40.7%; P<0.001). By 26 weeks' gestation the proportion of women screened across the three trial arms was similar (81%). The proportion of women who knew the carrier status of the baby's father by 11 weeks' gestation was 0% (0/441) in the midwife care arm, 2% (13/677) in the GP parallel testing arm (P=0.003), and 1% (3/590) in the GP sequential testing arm (P=0.374). CONCLUSION: Offering antenatal screening for sickle cell disease and thalassaemia as part of consultations for pregnancy confirmation in primary care increases the proportion of women screened before 10 weeks' gestation. Even with intervention, however, only a minority of women were screened before 10 weeks. Additional interventions should be considered to achieve testing early in pregnancy for most women wanting such tests so that couples with affected pregnancies have less time pressure to choose options, which may include termination of the pregnancy. TRIAL REGISTRATION: Current Controlled Trials ISRCTN00677850.

Testing the children: do non-genetic health-care providers differ in their decision to advise genetic presymptomatic testing on minors? A cross-sectional study in five countries in the European Union.

BACKGROUND: Within Europe many guidelines exist regarding the genetic testing of minors. Predictive and presymptomatic genetic testing of minors is recommended for disorders for which medical intervention/preventive measures exist, and for which early detection improves future medical health. AIM: This study, which is part of the larger 5th EU-framework "genetic education" (GenEd) study, aimed to evaluate the self-reported responses of nongenetic health-care providers in five different EU countries (Germany, France, Sweden, the United Kingdom, and the Netherlands) when confronted with a parent requesting presymptomatic testing on a minor child for a treatable disease. METHODS: A cross-sectional study design using postal, structured scenario-based questionnaires that were sent to 8129 general practitioners (GPs) and pediatricians, between July 2004 and October 2004, addressing self-reported management of a genetic case for which early medical intervention during childhood is beneficial, involving a minor. RESULTS: Most practitioners agreed on testing the oldest child, aged 12 years (81.5% for GPs and 87.2% for pediatricians), and not testing the youngest child, aged 6 months (72.6% for GPs and 61.3% for pediatricians). After multivariate adjustment there were statistical differences between countries in recommending a genetic test for the child at the age of 8 years. Pediatricians in France (50%) and Germany (58%) would recommend a test, whereas in the United Kingdom (22%), Sweden (30%), and the Netherlands (32%) they would not. CONCLUSION: Even though presymptomatic genetic testing in minors is recommended for disorders for which medical intervention exists, EU physicians are uncertain at what age starting to do so in young children.

Educational priorities and current involvement in genetic practice: a survey of midwives in the Netherlands, UK and Sweden.

OBJECTIVE: to investigate whether practising midwives are adequately prepared to integrate genetic information into their practice. DESIGN: a cross-sectional, postal, structured questionnaire survey was sent to practising midwives. SETTING: practising midwives from the Netherlands (NL), Sweden (SE) and the United Kingdom (UK). PARTICIPANTS: 1021 replies were received, achieving a response rate of 62%. FINDINGS: 79% (799/1015) of midwives reported attending courses with some 'genetic content' during their initial training. Sixty-eight per cent (533/784) judged this to have been useful for clinical practice. Variation was seen between countries in the amount of genetic content in post-registration training (SE 87%, NL 44%, UK 17%) and most was considered useful. Questions assessing clinical activity identified a current need for genetic knowledge. Midwives described low levels of self-reported confidence both in overtly genetic procedures and in everyday tasks that were underpinned by genetic knowledge. For eight of the 12 procedures, fewer than 20% of midwives considered themselves to be confident. Differences were apparent between countries. Midwives identified psychosocial, screening and risk assessment aspects of genetic education as being important to them, rather than technical aspects or genetic science. CONCLUSIONS: given the low reported confidence with genetic issues in clinical practice, it is essential that this is addressed in terms of the amount, content and targeting of genetic education. This is especially important to ensure the success of national antenatal and baby screening programmes. The results of this study suggest that midwives would welcome further training in genetics, addressing genetic topics most relevant to their clinical practice.

Diversity, attrition and transition into nursing.

AIM: This paper is a report of a study to explore the relationship between selected diversity variables (sex, country of birth, ethnicity, age, educational qualifications, and additionally visa status, application route, absence rates), and nursing students' progression and attrition. BACKGROUND: Debates on levels, forms and causation of nursing student attrition have been professional, academic and political concerns for some time on an international level. However, a more systematic approach to studying the topic is needed. We lack commonly operationalized national and international data on the relationship between attrition and diversity variables, and their implications for cost, social justice and demographic representativeness in nursing. METHODS: A longitudinal cohort design was used. Data were collected from 2003 to 2005 from routinely collected data in student records. RESULTS: Males had lower odds of completing the programme than females, as did younger students. Compared with United Kingdom-born students, those born in Ireland, Zimbabwe, or other English-speaking countries were more likely to complete the programme. Students born overseas in non-English-speaking countries did not differ statistically significantly from United Kingdom-born students. Those at all qualification levels had similar odds of completion, except students already qualified at degree level, who were less likely to complete. CONCLUSION: Further national and international research is needed to understand better the causal variables underpinning differential attrition rates, with particular regard to understanding how different groups may experience the relationship between education and their broader circumstances and between the theoretical and the clinical elements of nurse education itself.

'In those days it was rare for a nurse to be actively involved in a study of this kind'.

Elizabeth Anionwu, Head of the Mary Seacole Centre for Nursing Practice, Thames Valley University recalls how a lack of information on sickle cell disorders became a driving force in her quest to search out answers, and shares the lessons--especially the importance of sharing ideas--that she has learned along the way.

The feasibility of using ethnicity as a primary tool for antenatal selective screening for sickle cell disorders: pointers from the research evidence.

The Department of Health has announced a linked antenatal and neonatal screening programme for haemoglobinopathies by 2004 in a comprehensive national plan for the National Health Service in Britain. In response the National Screening Committee has commenced development work on how such a programme can best be implemented, including investigation of the effectiveness of a question about ethnic origin as a basis for selection. In addition, two recent health technology assessment reports have assessed alternative options for antenatal and neonatal haemoglobinopathy screening programmes in the United Kingdom. Both reports and commentators have emphasised the importance of developing a standardised instrument for collecting ethnicity data and recommended early development of such work. An examination of the evidence base on the use of ethnicity as a primary screening tool reveals substantial variability in practice and in the quality of data collected, with risk group misclassification as high as 20% against a recommended target of under 5.5%. The literature on the conceptual basis and structure of ethnicity questions, method of assignment in data collection, and level of resolution on categorisation is reviewed to identify the most appropriate content and format of a screening question for the haemoglobinopathies. Question options are evaluated, including the use of an extended 2001 Census classification and a 'non-North European' identifier and a candidate question based on 'family origins' is offered for debate. Finally, issues relating to the testing of the efficiency of an ethnicity question and the operationalising of its use for antenatal sickle cell screening are discussed.