bluuebunny/crossref_metadata_2025_split huggingface dataset:
Abnormal serum free light chain ratios are associated with poor survival and may reflect biological subgroups in patients with chronic lymphocytic leukaemia
Authors: Pratt Guy , Harding Stephen , Holder Roger , Fegan Chris , Pepper Chris , Oscier David , Gardiner Anne , Bradwell Arthur R. , Mead Graham 
Published: November 2008

SummaryThe measurement of immunoglobulin serum free light chains (sFLC) has prognostic significance in plasma cell dyscrasias but its role in chronic lymphocytic leukaemia (CLL) is unknown. This retrospective study from three UK hospitals analysed sFLC in 181 untreated/pre‐treatment CLL patients and 78 treated CLL patients, with samples taken later in their disease. An abnormal sFLC ratio was significantly associated with poor overall survival for the 181 untreated/pre‐treatment patients (P = 0·0001) and for all patients (P = 0·002), irrespective of cause of death. Using multivariate analysis (n = 194), four independent prognostic variables for overall survival were identified namely Zap‐70 (P = 0·0001), β2M (P = 0·01), IGHV mutation status (P = 0·017) and an abnormal sFLC ratio (P = 0·024). For CLL patients with unmutated IGHV genes, elevated κ/λ ratios were adversely prognostic. For patients with mutated IGHV genes, reduced κ/λ ratios were adversely prognostic and associated with the poor prognostic IGHV3‐21, IGHV3‐48 and IGHV3‐53 subgroups, suggesting an abnormal sFLC ratio may reflect biological subgroups within CLL. Abnormal sFLC ratios need to be studied prospectively in CLL patients and the biological rationale for their abnormality investigated.
The presence of CD56/CD16 in T‐cell acute lymphoblastic leukaemia correlates with the expression of cytotoxic molecules and is associated with worse response to treatment
Authors: Dalmazzo Leandro F. F. , Jácomo Rafael H. , Marinato André F. , Figueiredo‐Pontes Lorena L. , Cunha Renato L. G. , Garcia Aglair B. , Rego Eduardo M. , Falcão Roberto P. 
Published: November 2008

SummarySome cases of T‐cell acute lymphoblastic leukaemia (ALL) express markers found in natural‐killer (NK) cells, such as CD56 and CD16. Out of 84 T‐cell ALL cases diagnosed at our Institution, CD56 and/or CD16 was detected in 24 (28·5%), which we designated T/NK‐ALL group. Clinical features, laboratory characteristics, survival and expression of cytotoxic molecules were compared in T/NK‐ALL and T‐ALL patients. Significant differences were observed regarding age (24·9 vs. 16·4 years in T/NK‐ALL and T‐ALL, respectively, P = 0·006) and platelet counts (177 × 109/l vs. 75 × 109/l in T/NK‐ALL and T‐ALL, respectively, P = 0·03). Immunophenotypic analysis demonstrated that CD34, CD45RA and CD33 were more expressed in T/NK‐ALL patients, whereas CD8 and terminal deoxynucleotidyl transferase were more expressed in T‐ALL patients (P < 0·05). The mean overall survival (863 vs. 1869 d, P = 0·02) and disease‐free survival (855 vs. 2095 d, P = 0·002) were shorter in patients expressing CD56/CD16. However, multivariate analysis identified CD56/CD16 as an independent prognostic factor only for DFS. Cytotoxic molecules were highly expressed in T/NK‐ALL compared to T‐ALL. Perforin, granzyme B and TIA‐1 were detected in 12/17, 4/17 and 7/24 T/NK‐ALL patients and in 1/20, 0/20 and 1/20 T‐ALL respectively (P < 0·001, P = 0·036 and P = 0·054). Therefore, the presence of CD56/CD16 was associated with distinct clinical features and expression of cytotoxic molecules in the blasts.
An adolescent ward; ‘in name only?’
Authors: Hutton Alison 
Published: November 2008

Aims and objectives.  The aim of the study was to explore how an adolescent ward was used by the two main users, nurses and adolescents, on a purpose‐built adolescent ward.Background.  In Australia, caring for the adolescent is part of paediatric nursing and many Australian hospitals boast of ‘adolescent‐only facilities’. These wards are established on the premise that adolescent patients are a ‘special’ group deserving their own ward space. With the development of adolescent wards, set ideals around what this type of environment provides have also arisen. These ideals are increased privacy and independence for the patient, a chance for peer interaction, to be nursed by specially trained staff and to provide opportunities for adolescent patients to participate in their own care.Methods.  This study used ethnography to gain a perspective of how ward space was used. Data were collected using participant observation and formal and informal interviews. Data were then analysed using the works of Lefebvre and Foucault.Results.  This study found that patient allocation, nursing observation and patient labels impact on how adolescent patients are nursed. Patients are expected to fit in, accepting all ministrations of nursing and staff.Conclusions.  On this ward, nursing work was paramount. Nurses treated the adolescent patient like any other. In saying this, the adolescent patient still found ways to adapt to the ward space and its rules and routines; so in this sense, the ward still worked for them, even if nursing work was paramount.Relevance to clinical practice.  This study contributes to current discourse on the formation of specialized facilities in general, as it shows that no matter how a ward space is set up, if the space is not used in that way, then the purported purpose of that ward space will be lost.
Parents’ narratives about their experiences of their child's reconstructive genital surgeries for ambiguous genitalia
Authors: Sanders Caroline , Carter Bernie , Goodacre Lynne 
Published: November 2008

Aim.  The aim of this study was to initiate an exploration of parents’ understanding and experiences of their child’s reconstructive genital surgeries for ambiguous genitalia.Background.  The determination of gender for a child born with ambiguous genitalia is a complex medical and social process influenced by biological, psychological, social and cultural factors. Two main approaches exist; one promotes interventions (optimal gender policy) while the other suggests delaying interventions (informed consent policy) until the child can contribute to the decision.Methods.  An exploratory narrative inquiry design was chosen. Data were collected through narrative interviews with a purposive non‐random sample of 10 parents of eight children (aged 0–11 years) who had ambiguous genitalia.Results.  Parents’ stories reflected strong protective instincts towards their children along with feelings of shock and disbelief. Parents’ social construction of gender influenced their attitudes and beliefs about their child’s ambiguous genitalia and the need for surgery. Parents’ desired to be ‘good parents’ and do what they perceived as ‘right’ for their child. They considered genital surgery as a necessity primarily relying on medical advice to guide them at times of uncertainty and confusion. Parents rarely shared stories about their child’s surgeries/genitalia outside of the couple relationship and these stories were often referred to as ‘secrets’.Conclusion.  Having a child with ambiguous genitalia was perceived as problematic and brought about changes in roles, responsibilities, goals and social status as a parent beyond those usually associated with parenthood.Relevance to clinical practice.  These early findings help increase awareness of parents’ experiences and of the problems and emotional challenges that parents face when their child is born with genital ambiguity.
Who does what? How staff in England and Denmark perceive roles in the coordination of children’s inpatient care: a comparison of questionnaire survey data
Authors: Beringer Antonia J , Fletcher Margaret E 
Published: November 2008

Aims and objectives.  To explore and compare staff perceptions of their own and others roles in the coordination of care for children in hospital in Denmark and England.Background.  The provision of well‐coordinated care is a declared aim of health care providers; however, there is no universally held model for achieving this. Staff have developed ways of coordinating care in response to local conditions creating diversity and inconsistency in practice.Design.  Survey.Methods.  A structured self‐administered questionnaire was used to gather perceptions of clinical staff (n = 85) about who should perform a range of specific care coordination activities. The study sites were two Danish and two English hospitals that provided local and regional children’s services. Data were coded and analysis assisted by using Excel spreadsheets.Results.  In both countries care coordination was perceived to involve many different staff groups. Of these, nurses and doctors were named most frequently as being responsible for coordination activities. There was consensus between countries about who should perform half the activities listed. Where there was not consensus, this was due to more frequent naming of administrative staff in the English sites and more frequent naming of nurses in the Danish sites. Overall, greater clarity about who should perform specific activities was recorded by the Danish staff.Conclusions.  Staff in England and Denmark hold many shared perceptions in relation to the performance of care coordination activities and their own roles in relation to these. However, the lack of clarity about who should perform specific tasks revealed by the English respondents indicates a greater potential here for omission or duplication of care coordination activities.Relevance to clinical practice.  Clarification of who should perform specific activities may contribute to improved coordination of care by reducing the opportunity for duplication or omission in the process of care.
Iranian nurses’ preparation for loss: finding a balance in end‐of‐life care
Authors: Boroujeni Ali Zargham , Mohammadi Rakhshandeh , Oskouie Sayede Fatemeh Haghdoost , Sandberg Jonas 
Published: November 2008

Aim.  To explore the nurse–patient interaction in terminally ill situations in acute care, focusing on the nurses’ preparation for loss.Background.  Caring for dying patients can be a distressing and sometimes even threatening experience for nurses. Despite the vast body of literature on nurse/patient interaction and the quality of end‐of‐life care, few studies focus specifically on nurses’ experience.Design.  A grounded theory approach was used to explore nurses’ interaction with dying patients and their families and examine how nurses deal with situations in which the patient’s death is inevitable.Method.  Eighteen nurses were interviewed up to three times each at three teaching hospitals in Isfahan, Iran, during autumn 2006. A shortlist of possible participants was obtained by means of theoretical sampling and those who had experienced the death of patients and were able to express their feelings verbally were selected.Results.  The results clarified a core consideration: striking a balance between restorative and palliative care, information and hope, expectations and abilities and intimacy and distance.Conclusion.  Attaining a balance in caring for dying patients is a major challenge to nurses: it concerns not only their interactions with patients and their families, but also their perceptions of themselves and their actions in end‐of‐life care.Relevance to clinical practice.  In end‐of‐life care, it is important for nurses to be able to change the focus of their care when the patient’s condition is diagnosed as irreversible. They also need to be well equipped to maintain a balance, thereby preparing themselves for the patient’s forthcoming death.
Children’s nurses’ research involvement: making practice‐focused research happen
Authors: Darbyshire Philip 
Published: November 2008

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.
Dealing with chaos and complexity: the reality of interviewing children and families in their own homes
Authors: MacDonald Kath , Greggans Alison 
Published: November 2008

Aims.  The aim of this paper is to share our experiences of dealing with chaos and complexity in interview situations in the home with children and young people. We highlight dilemmas relevant to dealing with multiple interruptions, building a rapport, consent and confidentiality. Furthermore, we discuss issues regarding the locus of power and control and offer some solutions based on our experiences.Background.  Creating a safe environment is essential for qualitative research. Participants are more likely to open up and communicate if they feel safe, comfortable and relaxed. We conclude that interviewing parents and their children with cystic fibrosis in their own homes, is chaotic and appears to threaten the rigour of data collection processes. Limited attention or print space is paid to this issue, with published articles frequently sanitising the messiness of real world qualitative research.Design.  Position paper.Methods.  In this position paper, we use two case studies to illustrate ethical and pragmatic challenges of interviewing out in the field. These case studies, typical of families we encountered, help emphasise the concerns we had in balancing researcher–participant rapport with the quality of the research process.Conclusions.  Dealing with perceived chaos is hard in reality, but capturing it is part of the complexity of qualitative enquiry. The context is interdependent with children’s perceived reality, because they communicate with others through their environment.Relevance to practice.  This paper gives researchers an insight into the tensions of operating out in the field and helps raise the importance of the environmental ‘chaos’ in revealing significant issues relevant to peoples daily lives. Knowing that unexpected chaos is part and parcel of qualitative research, will equip researchers with skills fundamental for balancing the well being of all those involved with the quality of the research process.
Parental presence during resuscitation in the PICU: the parents’ experience
Authors: Maxton Fiona JC 
Published: November 2008

Aim and objective.  To provide in‐depth understanding of the meaning for parents who were present or absent during a resuscitation attempt on their child in the PICU.Background.  Family presence during resuscitation remains a topic of debate with both benefits and disadvantages identified, yet few studies have asked parents of children in PICU to describe their experiences of being present or absent during this resuscitation and what this means to their understanding and coping. Additionally, minimal research has investigated parental presence during a successful resuscitation.Design.  A qualitative design was used based upon van Manen’s interpretative phenomenological approach.Methods.  Fourteen parents of critically ill children from one paediatric intensive care unit in Australia, who had either survived or died following a resuscitation attempt were interviewed.Results.  Four main themes were identified: (1) being only for a child; (2) making sense of a living nightmare; (3) maintaining hope in the face of reality; (4) living in a relationship with staff.Conclusions.  The findings underpin the inherent need for parents to choose to be present during resuscitation to make sense of the situation. Memories of the resuscitation were not long‐lasting and distress was for the potential death of a child, rather than the resuscitation scene. Parents who did not witness their child’s resuscitation were more distressed than those who did. Having the opportunity to make the decision to stay or leave was important for parents. Support during the resuscitation was best provided by experienced clinical nurses.Relevance to practice.  Recognition of the parents’ compelling need to stay will improve nurses’ understanding of how witnessing this event may assist family coping and functioning. Ways in which parents may be better supported in making the decision to stay or leave during resuscitation are identified.
The experience of living with a chronic illness during adolescence: a critical review of the literature
Authors: Taylor Rachel M , Gibson Faith , Franck Linda S 
Published: November 2008

Aims.  To identify and critique literature on the adolescent lived experience of chronic illness; describe the lived experience; and to make recommendations for clinical practice.Background.  Young people with chronic illness have the same developmental issues as those who are healthy. However, development can be disrupted by treatment and repeated hospitalisation. While the physical consequences of chronic illness on development have been established, the subjective personal experience is less known.Design.  Literature review.Methods.  Electronic databases and hand searches were made of the literature published between January 1990–September 2007. Literature was eligible for inclusion if it involved adolescents between 10–19 years, and published in English and used qualitative methods of data collection. Methodological quality was assessed using the criteria described by Cesario et al. [Journal of Obstetrics, Gynaecology and Neonatal Nursing 31 (2002) 31].Conclusions.  Twenty studies were identified involving young people with a wide variety of chronic illnesses. The study quality was variable, however, generally the majority was assessed as being good or fair. Seven common themes were found between the identified studies: developing and maintaining friendships; being normal/getting on with life; the importance of family; attitude to treatment; experiences of school; relationship with the healthcare professionals; and the future.Relevance to practice.  As there was commonality in themes between studies strategies to lessen the burden of chronic illness during adolescence do not necessarily need to be disease specific. Nurses need to focus on treating the young person rather than their illness.
Evaluating the impact of involving young people in developing children’s services in an acute hospital trust
Authors: Coad Jane , Flay Julia , Aspinall Mandy , Bilverstone Ben , Coxhead Elodie , Hones Becky 
Published: November 2008

Aims and objectives.  The aim of this paper is to reflect on how an acute hospital trust involved a youth council comprising 17 young people aged 11–18 years to improve children’s service delivery in one NHS trust in the UK.Background.  Over the last decade, there has been an increased emphasis on the active involvement and participation of children and young people in the decision‐making processes that affect them. However, one challenge in involving users in acute hospital trusts is how their views are used to develop services. For this reason, University Hospitals Coventry and Warwickshire NHS Trust, UK (University Hospitals Coventry and Warwickshire NHS Trust have given permission to have their name cited in the publication of this article) recognising the emerging national patient and public involvement agenda, planned and developed a youth council for the Trust in 2006.Process.  The process of setting up the youth council is outlined. An evaluation workshop took place with 15 members of the youth council and their views are incorporated around three specific areas:• Evidence that their involvement has improved trust services;• Barriers to young people’s voices being heard in service delivery;• What could promote young people’s involvement in healthcare services.Conclusion/Relevance to clinical practice.  This paper describes the setting up of a youth council but also discusses the potential barriers and how to overcome them to promote young people’s involvement in hospital trust service planning and development. Whilst the focus of the council was young people, the principles are of use to a wide range of clinical professionals faced with similar challenges.
Solving nursing shortages: a common priority
Authors: Buchan James , Aiken Linda 
Published: November 2008

Aims and objectives.  This paper provides a context for this special edition. It highlights the scale of the challenge of nursing shortages, but also makes the point that there is a policy agenda that provides workable solutions.Results.  An overview of nurse:population ratios in different countries and regions of the world, highlighting considerable variations, with Africa and South East Asia having the lowest average ratios. The paper argues that the ‘shortage’ of nurses is not necessarily a shortage of individuals with nursing qualifications, it is a shortage of nurses willing to work in the present conditions. The causes of shortages are multi‐faceted, and there is no single global measure of their extent and nature, there is growing evidence of the impact of relatively low staffing levels on health care delivery and outcomes. The main causes of nursing shortages are highlighted: inadequate workforce planning and allocation mechanisms, resource constrained undersupply of new staff, poor recruitment, retention and ‘return’ policies, and ineffective use of available nursing resources through inappropriate skill mix and utilisation, poor incentive structures and inadequate career support.Conclusions.  What now faces policy makers in Japan, Europe and other developed countries is a policy agenda with a core of common themes. First, themes related to addressing supply side issues: getting, keeping and keeping in touch with relatively scarce nurses. Second, themes related to dealing with demand side challenges. The paper concludes that the main challenge for policy makers is to develop a co‐ordinated package of policies that provide a long term and sustainable solution.Relevance to clinical practice.  This paper highlights the impact that nursing shortages has on clinical practice and in health service delivery. It outlines scope for addressing shortage problems and therefore for providing a more positive staffing environment in which clinical practice can be delivered.