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Aims: Nurse managers play key roles in creating and enforcing organisational hair policies and practices. This challenging paper will provoke discussion, debate and hopefully the dismantling of racist hair policies that disproportionately target black students and nurses., Background: Black people have suffered from centuries of hair racism that continues today. Unfortunately, many nurse leaders underestimate the significance of this issue, while perpetuating the injustice., Evaluation: This paper is based on research literature, media reports and authors' lived experiences regarding hair racism experienced by black people and nurses in particular., Key Issues: Nurse managers often create and police organisational hair policies and dress codes. As health services pledge to eradicate racism 'in principle', ending discriminatory hair policies offers nurse managers a practical way to make this principle a reality., Conclusions: Hair racism is real and damaging for many black nurses and has no place in a modern health service. Rather than designing and policing such structural racism, nurse managers can be instrumental in ending it., Implications for Nursing Management: Health service hair policies targeting black nurses especially are not 'neutral'. Nurse managers can challenge this institutional discrimination, demonstrating health services' commitment to ending racism in all of its guises., (© 2021 John Wiley & Sons Ltd.)

Aims and Objectives: This article aims to explore the ways in which neonatal nurses manage the uncertainty associated with the treatment and outcomes of extremely premature babies., Background: Current literature suggests that survival rates of extremely premature babies have increased; however, the incidence of long-term problems has not decreased among survivors. The outcomes can often not be predicted; therefore, there is much uncertainty associated with survival and outcomes. Neonatal nurses care for babies and families during these times of uncertainty. This article will focus on how neonatal nurses manage and survive the challenges associated with uncertainty when caring for extremely premature babies., Design: Qualitative., Methods: This article used a series of interviews in a qualitative study informed by phenomenological insights. The analysis of the interview data involved the discovery of thematic statements and the analysis of the emerging themes., Results: Three themes captured the experience of working with uncertainty from the perspective of the neonatal nurses: 'Everything is fine, then they crash': When the honeymoon is over; '"I don't know which one is going to be fine": it's like a lottery' and 'Balancing hope with reality'., Conclusion: Uncertainty had both positive and negative aspects, because while ever there was uncertainty, there was room for hope. While initial uncertainty of the baby's prognosis and outcome gave the nurses hope, certainty of diagnosis and poor outcome could take that hope away., Relevance to Clinical Practice: Increasing survival of extremely premature babies will see neonatal nurses caring for more babies ≤24 weeks gestation. Prematurity has risks associated with life-sustaining treatments. Uncertainty is a reality of life for these babies, their families and the nursing and medical teams who care for them. It is important to recognise the challenges associated with uncertainty., (© 2015 John Wiley & Sons Ltd.)

Aim and Objective: This paper aims to explore the ways in which neonatal nurses understand the experience of parents who have experienced infertility, conceived a baby via in vitro fertilisation and delivered an extremely premature infant. The chance of a poor long-term outcome for the baby is significant; therefore, parental anguish plays out in the neonatal intensive care., Background: Current literature suggests that infertility is a significant issue for ageing women and many couples experience multiple cycles of invitro-fertilisation (IVF) treatment to achieve a pregnancy. Babies conceived through IVF are more likely to have genetic disorders, and be born prematurely. When the baby is born through IVF and is also born extremely prematurely, it creates a crisis situation for the parents. This paper will focus on the parental anguish of achieving a pregnancy through IVF to see the baby born extremely prematurely (defined as ≤ 24-week gestation). It will examine parental anguish from caregiver perspective of the neonatal nurse who supports the parents through this very difficult time., Design: This study used interviews with neonatal nurses, and drew insights from interpretative phenomenology., Methods: This research used a combination of a questionnaire and a series of interviews in a qualitative study informed by phenomenology. The analysis of the interview data involved the creation of key themes following extensive coding of thematic statements and the analysis of the emerging themes., Results: This paper outlines the neonatal nurses' understanding of parental anguish and overwhelming sadness in parents whose baby was conceived by IVF, and was also born extremely prematurely. The theme of 'seeking parenthood' was synthesised from two sub-themes - 'longing for a baby' and 'the desperation to become parents'., Conclusion: This study identified that neonatal nurses bear witness to parental anguish as their hopes of taking home a live baby might not be realised. The time, effort and money required to achieve a pregnancy does not mean that the baby will be spared the outcomes of extreme prematurity and the risk factors associated with IVF. The parents may be left empty handed. Therefore, the word precious becomes a metaphor for the IVF baby as the neonatal team try desperately to give the parents their much longed baby., Relevance to Clinical Practice: Delayed child bearing has an impact on fertility, with maternal age having the most impact on the ability to conceive. Babies conceived through IVF technologies have a higher risk of genetic abnormalities and being born prematurely, and this will impact on the neonatal intensive care availability. Extreme prematurity and IVF can significantly impact on the baby's outcome. Witnessing parental anguish can be a major source of stress for the neonatal nurses. Neonatal nurses need to develop strategies not only to help the parents but also to prevent the parents' overwhelming sadness from affecting their ability to function in the neonatal intensive care unit., (© 2015 John Wiley & Sons Ltd.)

Aims and Objectives: To explore the ways in which neonatal nurses draw meaning and deal with the challenges associated with caring for extremely premature babies., Background: Current literature suggests that nurses face challenges providing care to certain patients because of their appearance. This article will focus on those difficulties in relation to neonatal nurses caring for infants ≤24 weeks of gestation in the neonatal intensive care unit. Extremely premature babies often have more the appearance of a foetus than the appearance of a baby, and this presented challenges for the neonatal nurses., Design: This paper has used interviews and drew insights from interpretative phenomenology., Methods: This paper used a series of interviews in a qualitative study informed by phenomenology. The analysis of the interview data involved the discovery of thematic statements and the analysis of the emerging themes., Results: This paper outlines the difficulties experienced by neonatal nurses when caring for a baby that resembles a foetus more than it does a full-term infant. The theme the challenges of caregiving was captured by three subthemes: A foetus or a viable baby?; protective strategies and attributing personality., Conclusion: This study identified that neonatal nurses experience a range of difficulties when providing care for an infant who resembled a foetus rather than a full-term baby. They employed strategies that minimised the foetal appearance and maximised the appearance and attributes associated with a newborn baby., Relevance to Clinical Practice: Increasing survival of extremely premature infants will see nurses caring for more babies ≤24 weeks of gestation. Caring for extremely premature babies has been reported as being stressful. It is important to understand the nature of stress facing this highly specialised neonatal nursing workforce. Supportive work environments could help to ameliorate stress, facilitate better care of tiny babies and decrease staff turnover., (© 2014 John Wiley & Sons Ltd.)

Aims and Objectives: This study sought to discover bereaved parents' perspectives and experiences of a nurse-led, ward-based, telephone support programme in a children's oncology unit., Background: Parental grief is especially intense and long-lasting, and many parents can experience serious psychological problems. The oncology team learned that some parents felt 'forgotten' or 'abandoned' following their child's death and addressed this concern by initiating and subsequently evaluating a telephone bereavement support programme., Design: An interpretive phenomenological investigation of the experiences of six parents who participated in the programme., Methods: Parents shared their experiences and perceptions of the programme in individual interviews. Interpretive phenomenology and thematic analysis guided the interviews' interpretation to ascertain both the parents' experiences of the programme and their understandings of everyday clinical terms such as 'support' or 'reassurance'., Results: Parents found the programme supportive, especially valuing ongoing contact with a nurse who 'knew them'. Telephone contact was preferred to visiting the hospital, which brought back painful memories. Calls were important elements in helping parents create meaning and memory around their deceased child., Conclusions: Regular telephone contact over an agreed period from a familiar member of the child's treating team can create a more positive and supportive bereavement experience for parents in the year following their child's death. The specific findings are discussed in the context of the death of a child as a crisis of meaning., Relevance to Clinical Practice: Clinical nurses are ideally placed to use existing close relationships to extend care and support to bereaved parents. This study shows how nurses can identify service gaps, work with interdisciplinary team colleagues to initiate appropriate actions and participate in the essential evaluation subsequently required., (© 2012 Blackwell Publishing Ltd.)

Aims and Objectives: This study describes the implementation and evaluation of a new Body Awareness Programme (BAP) in bereavement support for adolescents. The BAP's aims were to provide information and insight into adolescents bodily reactions, to help them develop a deeper understanding of the reasons for bodily reactions and to introduce adolescents to healthy coping techniques., Background: Three main bodily reactions can follow a traumatic event such as the death of a loved one. The arousal of physical responses causes restlessness, concentration problems and disturbed sleep while 'flashbacks' of unpleasant memories contribute to increased tension. Active avoidance manifests as increased activity and avoidance of talking or thinking about unpleasant memories. These reactions may interfere with an adolescent's development and inhibit a healthy grieving process., Design: A qualitative, hermeneutic-phenomenological design., Methods: Data were collected using the BAP together with in-depth interviews with adolescents, focusing particularly on their experiences or recollections of their bodily reactions and coping. Seven adolescents participated, aged 13-18 years, who use our bereavement services., Results: The adolescents in our study internalised their struggles, and beneath their facade of coping, they reported having painful bodies that were stiff and restless. They were also anxious, experiencing painful thoughts of the deceased. The adolescents found the BAP helpful because they gained awareness of the body-behaviour-feelings connections, experiencing the techniques as helpful and possibly useful in their everyday lives., Conclusion: The results of this evaluation of the BAP are positive and suggest that this approach is both necessary and valuable in a bereavement support programme for adolescents., Relevance to Clinical Practice: Adolescents must recognise their own embodied reactions and understand their underlying causes before they can change their attitudes or seek appropriate help during bereavement. Health professionals should see beyond adolescents' facades and offer them support., (© 2012 Blackwell Publishing Ltd.)

Background: Haemopoietic stem cell transplantation (HSCT) is a life-saving but intensive procedure associated with potentially severe adverse late effects. We aimed to determine morbidity and health-related quality of life (HRQOL) in a sample of survivors aged 8-18 years at least 1 year post HSCT for paediatric acute leukaemia, compared with a non-transplanted group of survivors matched for age, gender, initial disease and time since treatment., Methods: Families (N = 54; HSCT n= 29) recruited from four UK centres completed measures of child behaviour and school attendance, HRQOL and finances. Mothers completed measures of their own well-being. Clinical outcome data were extracted from medical records., Results: Children in the HSCT group had significantly more late effects and had received more tests for vision, bone, dental and skin health, and thyroid, lung, and gonadal function than the non-transplanted group. HRQOL scores for the HSCT group were significantly lower in all domains compared with the non-transplanted group and population norms, but were not significantly related to clinical indices. Mothers in the HSCT group had significantly poorer mental well-being than population norms., Conclusion: Significant morbidity and compromised HRQOL was found in survivors of HSCT. The burden of caring for a child after HSCT has a continuing toll on mothers' well-being.The importance of counselling families about possible long-term consequences is emphasized., (© 2010 Blackwell Publishing Ltd.)

Aim: This paper is a report of an exploration of the experiences of patients with end-stage kidney disease who were having haemodialysis., Background: The losses and lifestyle disruptions caused by end-stage kidney disease are a fundamental source of suffering for people. The hope of a transplant is an important factor in people's ability to cope with end-stage kidney disease and dialysis., Method: A Heideggerian phenomenological methodology was used. A purposive sample was selected of 16 patients with end-stage kidney disease having hospital-based haemodialysis therapy in the Republic of Ireland. Qualitative interviews were conducted in 2006-2007. Data were analysed using qualitative interpretive analysis., Findings: The overarching pattern identified was 'Waiting for a kidney transplant'. This pattern consisted of three themes: living in hope, uncertainty and being on hold. Participants described their experiences of living in hope while they waited for a kidney transplant. However, as the waiting time continued indefinitely, participants became uncertain, and this meant that they were unable to contemplate opportunities in the future. Moreover, the restrictions of haemodialysis therapy prevented them from performing many of the activities they had taken for granted in the past. Consequently, they described their experiences of being on hold while they waited for a kidney transplant., Conclusion: Nurses should engage in open and honest discussions with patients in relation to kidney transplantation so that they are able to recognize and address their concerns about kidney transplantation., (© 2010 Blackwell Publishing Ltd.)

Aim: This paper presents a discussion of the current state of joint chair or clinical chair positions in nursing. Background.  Joint chair positions in nursing or midwifery have been popular approaches to developing clinical research and to bridging the 'theory-practice gap'. Recent personal observations and commentaries in the literature suggest that the service-academy consensus that underpinned such positions may be crumbling., Data Sources: This paper is based on 13 years' experience of holding a joint chair position, an extensive review of the professional literature (up to and including 2009 sources), and conversations and discussions with many professorial and joint chair colleagues., Discussion: Despite its demonstrated success, the joint chair position may be under threat from competing and unrealistic demands from partner organizations and from changing understandings of the essential role and nature of a professor. The situation may be exacerbated by appointing inexperienced or unsuitable applicants to such key posts., Implications for Nursing: The joint chair position was a powerful initiative in nursing and midwifery with real potential. In the current climate, this potential is unlikely to be realized and nursing will be the poorer., Conclusion: If joint chair positions are still valued and seen as key roles in developing clinical research and university-service partnerships, then serious consideration needs to be given to the current state of position. I argue for a return to trust and what Onora O'Neill calls 'intelligent accountability' rather than the micromanagement that is so prevalent in both the health and academic industries., (© 2010 Blackwell Publishing Ltd.)

Background: Thalassaemia Major (TM) is a serious condition characterized by life-long dependence on blood transfusions and chelation therapy. Our aim was to determine health-related quality of life (HRQOL) in children with TM living in the UK, and the impact of caring for a child receiving National Health Service treatment on family finances., Methods: This was a cross-sectional assessment of HRQOL in children (n= 22) with TM aged 8-18 years. Children were recruited from three UK Paediatric Haematology and Bone Marrow Transplant centres. Mothers completed measures of their child's HRQOL [PedsQL 4.0 (Measurement Model for the Pediatric Quality of Life Inventory, James W. Varni PhD, PedMetrics, Quantifying the Qualitative SM, Copyright 1998-2009)] and behaviour (Strengths and Difficulties questionnaire), and the impact of caring for the child on family finances., Results: Child behaviour was within the normal range but child HRQOL was significantly lower than population norms. Family financial concerns associated with TM were associated with poorer child HRQOL (P= 0.020)., Conclusions: Thalassaemia Major poses a considerable challenge to child HRQOL, well documented in areas of the world where TM is prevalent. Despite the availability of National Health Service care and financial benefits our study suggests a similar burden in the UK.

Aims and Objectives: The Family Support Program was created to support children and parenting when one of the parents has incurable cancer. We chose a family-based approach to support parent's coping and to help families pull together, identify strengths in the family and learn how to seek help., Background: Cancer is usually a new experience for young families. In most cases, parents do not have the necessary knowledge about their children's need for information and support about their parent's serious illness and impending death., Design: A qualitative evaluation study based on data collected through in-depth interviews focusing on parent's experiences with the Family Support Program., Methods: Participants were patients with incurable cancer and their partners and ex-partners with children aged between 5-18 years. Thirteen parents were in-depth interviewed., Results: Parents described how the Family Support Program helped them gain greater insight into their children's thoughts and reactions and into how the situation affected their daily living. Parents reported that conflicts were reduced, they could talk more openly about the situation in the family and that they were shown how to support their children's coping., Conclusion: The Family Support Program met the parents in the study's needs for more information and support about how to cope with their children during the patient's terminal illness., Relevance to Clinical Practice: The Family Support Program is described in detail in a manual that makes it easy for other health workers to use the same programme. The Family Support program was in use in outpatient clinics, oncology wards and palliative care units and was provided both from nurses and social workers trained in cancer care. Parent's in the study would like the Family Support Program to be available to all patients who receive the poor prognosis that their cancer cannot be cured.

Aims of the Paper: In this paper I hope to, at least partially, succeed in demystifying the research process, especially as it may be perceived by clinicians, encourage their involvement and participation in clinical research and propose practical and rewarding strategies that all children's nurses can adopt to begin to create a vibrant research culture in any clinical area., Background: The professional and organisational expectation that all nurses will, in some way, be involved in research is growing and will not go away. Despite the historic, toxic dualism that has seen research as essentially the prerogative of 'The Academy', clinicians are beginning to take more of an interest and role in research, despite the many obstacles that they face. In today's health care system, children's nurses cannot afford to abdicate responsibility for research or to postpone their involvement until the ideal conditions for their engagement come along. This paper suggests approaches and strategies that clinicians, educators, managers and researchers can use as a basis for productive and mutually beneficial collaborative research initiatives., Design: Position paper., Conclusions: Developing clinical-focused, collaborative, interdisciplinary research is now a worldwide policy and practice imperative. There is no reason why children's nurses cannot take a leading role in this movement. Previous models of research where research has been undertaken by academics and then 'disseminated' to clinicians who are expected to 'implement' it (and who are then subsequently blamed for failure) has been less than successful and small wonder., Relevance to Clinical Practice: Where clinicians are directly involved as genuine research partners in both the research process and the project from day 1, there is a real prospect that both the benefits of the inquiry process and any research findings will be more readily adopted by the clinical areas concerned.

The tyrosine kinase ZAP-70 plays a critical role in signal transduction in T cells and NK cells but has limited expression in primary human B cells. ZAP-70 is, however, expressed in adult B cell chronic lymphocytic leukemia where it correlates with a poor prognosis. We wished to determine if ZAP-70 is also expressed in pediatric B cell malignancy. A quantitative PCR assay for ZAP-70 expression was established and ZAP-70 expression in a range of human B cell lines was compared with expression in the Jurkat T cell line. ZAP-70 expression was then determined in bone marrow lymphoblasts obtained from 12 patients with pre-B cell acute lymphoblastic leukemia (ALL). ZAP-70 expression was not detected in mature B cell lines but was detected in pre-B cell lines at a level comparable to that seen in T cells. ZAP-70 expression was strongly expressed in nine of the 12 cases of primary pre-B cell lymphoblastic leukemia. The T cell-associated protein kinase ZAP-70 is highly expressed in pre-B lineage cells and most cases of pre-B acute lymphoblastic leukemia. ZAP-70 expression may hold prognostic value for pre-B ALL and raises the prospect of a novel therapeutic target.

Aim: The aims of this paper were to review and critique existing research literature on children's and young people's experiences of chronic renal disease and to propose alternative approaches that may be more fruitful in addressing existing research shortcomings., Background: Chronic renal disease, which results in approximately 1.6-4 new cases per year per million population in the 0-15 years age group, is a serious illness that causes severe and irreversible reduction in kidney function. Despite modern medical advances, its significance and implications for the lives of the children and young people concerned are profound., Method: Salient literature for this review was obtained using the major health and social science electronic databases such as Medline, CINAHL, Psyclit and Sociofile. Manual searching of relevant books, journals and 'grey literature', combined with the genealogy approach, extended and strengthened the search., Conclusions: Research in this area focuses mainly on two areas, namely psychological adjustment and adaptation to end-stage renal disease. This research is grounded within a framework of empirical psychology that values objectivity, measurement and quantification. This predominantly psychometric approach is critiqued for simplifying the complex experience of end-stage renal disease and for pathologizing children and young people with this disease. We identify a significant gap in the research literature, namely the lack of research that takes into account these children's and young peoples'own perspectives of their experiences., Relevance to Clinical Practice: Chronic renal disease has a significant impact on children's and young people's lives. Understanding the experiences of these children is important for the provision of effective healthcare. Conducting child-centred qualitative research in this area would allow us to explore vital questions of meaning, perception and understanding. If health and social care organizations claim to provide 'consumer-focused' services, it behoves us to develop first a clearer understanding of the lives and experiences of children and families who seek our help and to use this knowledge and understanding to plan and provide more grounded and responsive services.

Aims of the Paper: The paper describes the creation of, the rationale behind and the external funding of a collaborative research-clinical practice development position. The paper also demonstrates the benefits of nursing's collaboration with external funding bodies and the value of moving from our traditional position of assuming that 'the hospital' will always provide., Background: There is a constant refrain that nursing must become more 'research-based' and develop an active research culture. In harsh financial times however, funding for research development is scarce. Nurses can respond to this by bemoaning the lack of money or by taking an entrepreneurial approach, creating innovative project proposals that develop new partnerships and attract external funding., Discussion: Institutional support for clinical research is often more verbal than financial as most health care systems are experiencing extreme financial stringencies. Nurses need to reconsider the notion that every initiative must automatically be funded by the institution. In this paper we show how in a busy major hospital, clinicians and researchers collaborated to create and fund the kind of innovative research and practice development position that may be impossible to fund through existing budgets., Conclusion: With creativity and determination, nurses can challenge the orthodoxy that they are solely dependent on institutional funding. If there is a clear project vision, a convincing rationale, a strongly argued 'business case' and a passionate and persistent team, then innovative new projects and positions can be realized., Relevance to Clinical Practice: Developing clinical focused, practice based research is now a worldwide policy and practice imperative for nurses. Unfortunately, current levels of institutional funding are unlikely to support research promotion positions and initiatives. This paper outlines an approach to securing funding for research initiatives that can create exciting new positions and develop productive partnerships between researchers, clinicians and external agencies.

Background: Computerized Patient Information Systems (CPIS) are used increasingly in health care, yet few studies have asked clinicians to describe their experiences of using these systems and what they mean to their practice and patient care., Aims and Objectives: The aim of this study was to explore clinical nurses' and midwives' perceptions and understandings of computerized information systems in everyday practice. The objective was to provide a detailed and faithful account of clinicians' experiences of using such systems., Design: A qualitative design was used, based upon interpretive phenomenology., Methods: A total of 13 focus groups involving 53 practitioners was conducted in hospitals across five Australian states with nurses and midwives from a wide range of practice settings. The participants ranged from Level 1 RNs to Clinical Nurse Consultants and nurses with an IT project management role., Results: This study focuses specifically on clinicians' experiences of using CPIS to manage clinical information. Clinicians' experiences were characterized by digital disappointment rather than electronic efficiencies. Clinicians reported generally that computerization had neither enhanced their clinical practice nor patient care, nor had it improved patient outcomes., Conclusions: Participants' experiences were predominantly negative and mostly critical of CPIS and their: perceived inability to capture 'real nursing', difficulty in use, incompatibilities, non-responsiveness and irrelevance to patient care and meaningful clinical outcomes., Relevance to Clinical Practice: Technological 'solutions' to health care problems are endlessly seductive and easily entrance policy and decision makers. Computerization will continue to impact upon clinical practice and cannot be wished away. Today's computerized systems may have been developed with scant regard for clinician end-users. A crucial issue facing everyone in health informatics is how point-of-care systems can be developed in ways that involve clinicians meaningfully and which recognize and respond to the complexity and subtlety of the world of nursing and midwifery practice.

It is often claimed that nursing is both an art and a science, yet nursing education has been reluctant to accord arts and literature a prominent place within nursing curricula. While the discipline of medical humanities has been developing for around two decades, there has been no comparable movement within nursing. This paper describes the development, implementation and initial hermeneutic evaluation of a new course, 'Understanding Caring Through Arts and Humanities' which we believe to be unique in being a fully accredited unit which is offered within a BA (Honours) Health Studies Degree for nurses and other health care professionals.

In a recent critique of the work of Patricia Benner in relation to expertise, skilled intuitive grasp and the Dreyfus model of skill acquisition, English (Journal of Advanced Nursing 1993, vol. 18, pp. 387-393) uses the tenets of positivism and cognitive psychology to criticize Benner's work for lacking objectivity, validity, generalizability and predictive power. In this response to English's critique I show how he has misread, failed to read, and consequently misunderstood her work, and, equally importantly, its philosophical basis. Benner's work is developed from a philosophical foundation grounded in interpretive and Heideggerian phenomenology. This wholly different 'take' on the world and on human behaviour embodies a strong critique of those very same traditional-science worldviews which English uses to damn her work. English's critique is valuable in highlighting the ways in which Benner's work can be misrepresented and this response tries to remedy this misunderstanding by attempting to clarify the fundamental differences between phenomenological and cognitive understandings. These differences are crucial to understanding Dreyfus's and Benner's work. Here, I also attempt to correct some of English's wilder assertions regarding Benner's work. Finally, I try to show how Benner's work has empowered, enthused and challenged, rather than being 'denigrating to the majority of nurses'.

The desirability of encouraging parents to live-in with their hospitalized child is widely accepted (Department of Health 1991). This review traces the historical development of parental involvement in paediatrics. The literature reviewed shows that parental participation and living-in has been viewed largely as philosophically and professionally unproblematic. These 'cardinal principles' of paediatric nursing have been advocated and operationalized with little or no attempt made to understand what living-in is like for either parents or for the nurses who work with them. It is proposed that research approaches in this area are required which are more hermeneutic and dialogic.