Raymond Carlton Barfield

Introduction This article presents a holistic model for clinical palliative care and research which expands and improves previous models by fully recognizing the place of culture in illness. Methods Literature review and philosophical enquiry. Results Holistic models of patient care are essential to the practise of patient-centred care. However, these models have up to now largely neglected the role of culture and the search for meaning in the illness experience, despite evidence of disparities in the access of palliative care services by people from ethnic minority groups. A phenomenological approach to illness highlights three principles: that illness is cultural, that the search for meaning related to the finitude of human life is fundamental to the illness experience, and that illness narratives are culturally conditioned manifestations of the search for meaning in illness. A holistic model for palliative care is presented on the basis of these principles. Discussion A holistic model that recognizes the place of culture in illness has implications for clinical practice, service development, and training. We propose an agenda for research into cultural and spiritual aspects of care on the basis of the model, including the formulation and evaluation of service models that take into account cultural features of illness and meet patients’ needs for support with finding meaning

Introduction: Health care providers' understandings of parental bereavement needs before and in the acute period following the death of an infant with a complex chronic condition are based upon models that outline the process of grief and provide direction for possible points of intervention. These models do not address prospective factors along the illness trajectory that may contribute to the depth and debilitating nature of grief, and fail to clarify the influence of social structures on parents' experience and construct of grief, loss, and mourning. The purpose of this study was to prospectively describe the bereavement experience of parents whose infants die in acute care settings with a complex chronic condition. Methods: A longitudinal, qualitative, descriptive design was used to explore the process of parental bereavement. Extreme case sampling with variation on race, socioeconomic status, prenatal diagnosis, and multiple gestations was used to select 7 cases represented by over 72 narrative interviews with parents. Results: Findings are organized into five broad categories: Having Expectations, Continuity of Care, Memory Making, Wide Network of Support, and Altruism. Themes under each category were developed based upon examples given in the parental interviews. Conclusion: This study provides an exploration of the complex and longitudinal nature of bereavement. Anticipatory support initiated prior to the death of an infant can help parents experience a smoother transition from caring for their very ill child to coping with the actual death event and its aftermath.

Single nucleotide polymorphisms (SNPs) of the interleukin 1 (IL-1) family have been implicated in acute graft-versus-host disease and mortality postallogeneic hematopoietic stem cell transplantation (HSCT) in adults. Hepatic veno-occlusive disease (VOD) is a well-known complication of HSCT and can result in an increased risk of mortality. In this study, we sought to investigate the association of both patient and donor genotypes at the IL-1β −511 cytidine/thymidine (C/T) polymorphic site with hepatic VOD and mortality in an exclusive pediatric cohort undergoing matched myeloablative allogeneic HSCT. Donor TT genotype was associated with higher cumulative incidence of grade III-IV hepatic VOD at 3 months after transplantation relative to donor CT and CC genotypes (25±13.1% in TT, 2.9±2.9% in CT, and 3.6±3.6% in CC; P=0.024). Neither recipient nor donor IL-1β −511 single nucleotide polymorphisms genotypes were associated with mortality or relapse. Our findings suggest that donor, rather than host, genotype at the IL-1β −511 polymorphic site may associate with higher risk for severe VOD after matched allogeneic HSCT. Our findings challenge the assumption that host factors are exclusively responsible for VOD and suggest a novel role for the donor inflammasome pathway in inducing injury and microvascular disease after HSCT, which merits further study in a larger cohort analysis.

Palliative care for children and adolescents with cancer includes interventions that focus on the relief of suffering, optimization of function, and improvement of quality of life at any and all stages of disease. This care is most effectively provided by a multidisciplinary team. Nurses perform an integral role on that team by identifying symptoms, providing care coordination, and assuring clear communication. Several basic tenets appear essential to the provision of optimal palliative care. First, palliative care should be administered concurrently with curative therapy beginning at diagnosis and assuming a more significant role at end of life. This treatment approach, recommended by many medical societies, has been associated with numerous benefits including longer survival. Second, realistic, objective goals of care must be developed. A clear understanding of the prognosis by the patient, family, and all members of the medical team is essential to the development of these goals. The pediatric oncology nurse is pivotal in developing these goals and assuring that they are adhered to across all specialties. Third, effective therapies to prevent and relieve the symptoms of suffering must be provided. This can only be accomplished with accurate and repeated assessments. The pediatric oncology nurse is vital in providing these assessments and must possess a working knowledge of the most common symptoms associated with suffering. With a basic understanding of these palliative care principles and competency in the core skills required for this care, the pediatric oncology nurse will optimize quality of life for children and adolescents with cancer.

The information gained from pharmacogenomic testing is becoming increasingly recognized as an opportunity to improve our current dosing strategies for children. The identification of gene polymorphisms that influence drug disposition and effect can be used to help predict a child’s susceptibility to toxicity and/or response to a particular drug or therapeutic regimen. However, the potential consequences of performing genomic analysis in children raise important ethical considerations. Although the level of risk introduced remains partially hypothetical, awareness of the ethical concerns and protective legislation will be an important part of fully informing patients, families, clinicians, and researchers about the risks and benefits of pharmacogenomic testing in children. Where it can be done without loss of benefit, risk reduction is a moral imperative, and so the ethical complexities related to pharmacogenomics must be addressed in an ongoing way as we continue to learn more about the value of the techn...