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A framework for integrated pediatric palliative care: being with dying.

Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges their limited life expectancy and severity of illness. Two case studies of children illustrate different approaches-one that aggressively applies all possible technologies to maximize chances of survival and another that focuses on the patient's overall quality of life and on healing rather than curing. The cases highlight characteristics of an integrated model of palliative care to address clinical, moral, and ethical uncertainties. This model integrates being with doing, provides for developing attunement and presence as capacities for being with children and their parents, and addresses challenges in the healthcare environment. Strategies for integrating palliative care into pediatric practice include listening, fostering respect for the child and parents across the organization, nurturing collaborative connections, managing uncertainty, tolerating ambiguity, making peace with conflict, and committing to self-care. Every pediatric nurse can play a role in making the vision of palliative care a reality integrated into the fabric of pediatric practice.

Benchmarking↗

New advances in sex preselection.

OBJECTIVE: To review the current developments in the field of preconceptual sex selection and to discuss the moral dilemmas that accompany the scientific progress. DESIGN: A survey of the major publications on sex preselection. RESULTS: Examination of current methods of preconceptual gender selection revealed that in vivo methods such as timing of intercourse, the use of ovulation induction medications, and artificial insemination do not appear to affect the sex ratio to a clinically significant degree. In vitro separation of X- and Y-bearing spermatozoa by gradient techniques have been reported to alter significantly the sex ratio at birth. However, these trials were noncontrolled, and molecular biological techniques could not validate that these methods indeed change the Y- to X-bearing spermatozoa ratio sufficiently for clinical use. Nevertheless recent scientific advances have made highly reliable preconceptual sex selection possible by using preimplantation diagnosis or sperm separation by flow cytometry combined with IVF. At present, these methods have been used to avoid sex-linked disorders. Both involve the invasive procedure of IVF and thus are held by most as inappropriate for nonmedical indications. However, improvement in flow cytometry output of sexed spermatozoa might provide in the near future sufficient sorted gametes for artificial insemination. This technique then will provide an available noninvasive method of sexing for social purposes. CONCLUSIONS: Reliable preconceptual sex selection is currently possible only by preimplantation diagnosis, or sperm separation by flow cytometry combined with IVF. Both methods involve invasive procedures and are at present exclusively used for medical indications. It may be that in the near future, an improvement in flow cytometry output of sexed spermatozoa will provide sufficient sorted gametes for artificial insemination. In such a case, the medical community will be forced to take a stand, whether this reliable noninvasive method of sexing will be allowed for social purposes.

Cell Separation↗

Pfsbp1, a Maurer's cleft Plasmodium falciparum protein, is associated with the erythrocyte skeleton.

Antibodies from hyperimmune monkey sera, selected by absorption to Plasmodium falciparum-infected erythrocytes, and elution at acidic pH, allowed us to characterize a novel parasite protein, Pfsbp1 (P. falciparum skeleton binding protein 1). Pfsbp1 is an integral membrane protein of parasite-induced membranous structures associated with the erythrocyte plasma membrane and referred to as Maurer's clefts. The carboxy-terminal domain of Pfsbp1, exposed within the cytoplasm of the host cell, interacts with a 35 kDa erythrocyte skeletal protein and might participate in the binding of the Maurer's clefts to the erythrocyte submembrane skeleton. Antibodies to the carboxy- and amino-terminal domains of Pfsbp1 labelled similar vesicular structures in the cytoplasm of Plasmodium chabaudi and Plasmodium berghei-infected murine erythrocytes, suggesting that the protein is conserved among malaria species, consistent with an important role of Maurer's cleft-like structures in the intraerythrocytic development of malaria parasites.

Amino Acid Sequence↗

Expression of vascular permeability factor in glioblastoma specimens: correlation with tumor vascular endothelial surface and peritumoral edema.

Keeping in mind that the expression of vascular permeability factor (VPF) in astrocytic tumors has been related to tumor angiogenesis and peritumoral edema (PE), the aim of this study is to investigate the correlation between degree of VPF expression by tumor cells, and degree of PE and vascular endothelial surface (VES) in glioblastoma. Tumor tissue and neuroimaging data were studied in a series of 38 patients with glioblastoma. For each tumor, immunohistochemical and morphometric studies were performed in order to obtain a score of VPF expression, and a VES score, expressed as the CD-34 immunostained endothelial surface per each 1000 tumor cells. These parameters were related to the degree of PE. The results show that in glioblastomas there exist a clear correlation between the tumor-cell expression of VPF and VES, but we failed to obtain a significant correlation between degree of PE and degree of VES, or between degree of VPF expression and degree of PE. Our present results suggest that in glioblastomas, tumor angiogenesis is clearly related to the expression of VPF by tumor cells, but factors other than intratumoralpresence of VPF may contribute to the development of PE.

Adult↗

Intra- and extra-familial influences on alcohol and drug misuse: a twin study of gene-environment correlation.

AIMS: Genotype-environment correlation refers to the extent to which individuals are exposed to environments as a function of their genetic propensities. These correlations are important in the study of psychopathology because they identify environments that may maintain the expression of underlying genetic liabilities for a disorder. The present study examined the correlation between genetic liabilities for alcohol and drug misuse with perceptions of the social environments of the family of origin and the classroom. DESIGN: Postal survey data were collected from monozygotic and dizygotic twin pairs. SETTING: Twin pairs were recruited from Vancouver, British Columbia, Canada using newspaper advertisements and media stories. PARTICIPANTS: Eighty-five monozygotic and 77 dizygotic twin pairs were recruited from the general population. MEASUREMENTS: Twin pairs completed self-report measures of alcohol and drug misuse contained in the Dimensional Assessment of Personality Pathology, the Family Environment Scale, the Classroom Environment Scale, and the Traumatic Events Questionnaire. FINDINGS: Genetically indexed alcohol and drug misuse scores were regressed on the environmentally indexed FES and CES scales. Genetic liabilities for alcohol and drug misuse were associated with decreased perceived family moral-religious emphases, family cohesion and classroom task orientation and increased perceptions of classroom order and organization (strictness). CONCLUSIONS: Genotype-environment correlations, in particular, moral-religious emphases in the home, appear to be important in the development of substance misuse.

Adolescent↗

Adolescents' attachment representations and moral reasoning.

Theoretical speculations and empirical data on the relation between attachment and moral reasoning are presented. An autonomous attachment representation was hypothesized to be an important personality dimension facilitating higher levels of moral (Type B) reasoning in adolescence. A sample of 47 U.S. college students (mean age 19.5 years) completed the Adult Attachment Interview (Main & Goldwyn, 1985-1993) and the Sociomoral Reflection Measure-Short Form (Gibbs, Basinger, & Fuller, 1992). Although the overall score for sociomoral reflection was not associated with attachment representation, moral Type B reasoning was more prevalent in respondents with an autonomous attachment representation; thus, autonomous attachment may be at the core of mature moral reasoning.

Adolescent↗

Marijuana: its meaning to a high school population.

The present study investigated the meaning of the concept of marijuana as measured by both a semantic differential rating scale and a questionnaire. The responses of 100 male and female high school students (50 users, 50 nonusers) indicated that marijuana usage was primarily related to the pleasure of the high, while abstinence was associated with potential harmfulness of the drug to health and practical situational factors. The general response profile corresponded closely to that of a parallel college sample reported in an earlier study by LaDriere and Szczepkowski, suggesting that neither age and educational level nor sex constituted meaningful variables in drug use motivation. Finally the hypothesis that motivational factors specifically associated with adolescent dynamics--including needs for independence, social acceptance, and adventure--might influence the data of the high school sample was not confirmed.

Adolescent↗

Children of perpetrators of the Holocaust: working through one's own moral self.

The present study tests stages in the ability of some children of perpetrators of the Holocaust in Germany to work through emotional and moral issues regarding their fathers' perpetrating role during the Third Reich. The following questions are raised: Did they try to distance themselves by playing down the Holocaust and the moral meaning of their fathers' involvement in it? Did any children try to work through issues relating to their fathers' impaired morality? Did any children successfully reach the stage of integration? Fifty-seven persons were contacted by the author between September 1985 and June 1987, of whom 9 refused to be interviewed. Thirty interviewees were children whose fathers had taken an active part in the implementation of the euthanasia program, in the Einsatzgruppen, in the extermination camps or in related activities. The fathers of the remaining 18 interviewees were affiliated with SS units at times and in places where the atrocities took place, but what they actually did or did not do was not proven. In general, there was an almost total silencing of accounts of the extermination process in homes and schools. Acknowledgment, if any, of the atrocities appeared through accounts of trials and friends and in newspapers or, only recently, through the children's active searching. When children who learned what their father-perpetrator had done during the war also came to understand the moral implications, they usually experienced severe emotional conflict, which they had to confront on their own. Only a few succeeded in walking across a very narrow bridge to a working through of the related issues and emotions. The implications of the present analysis for future research on the prevention and outcomes of genocide are discussed.

Adaptation, Psychological↗

Sexuality, AIDS, and the lures of modernity: reflexivity and morality among young people in rural Tanzania.

An understanding of young people's perceptions of AIDS and their sexuality is an essential precondition for the effective planning of AIDS campaigns in sub-Saharan Africa. In examining how young Luo men and women in Tanzania describe their sexual behavior, I show that cultural conceptions of sexuality gender, and trust have an important impact on their actions. I also show that these conceptions have been rendered ambiguous by globalization, modernity, and by AIDS campaigns themselves. The values that are imparted to young people from family or peers often conflict with the preventive advice provided by both governmental and non-governmental organizations. However, by critically reflecting upon the ambiguities and inconsistencies in their lives, the young Luo have proven to be self-conscious actors and moral subjects who are actively involved in the process of social change. In the concluding section I suggest how elements of self-critique and self-reflection, as well as the often differing perspectives and dilemmas experienced by young men and women, can be taken into account in order to make future educational campaigns more effective.

Acquired Immunodeficiency Syndrome↗

Rescuing human embryonic stem cell research: the Blastocyst Transfer Method.

Despite the therapeutic potential of human embryonic stem (HES) cells, many people believe that HES cell research should be banned. The reason is that the present method of extracting HES cells involves the destruction of the embryo, which for many is the beginning of a person. This paper examines a number of compromise solutions such as parthenogenesis, the use of defective embryos, genetically creating a "pseudo embryo" that can never form a placenta, and determining embryo death, and argues that none of these proposals are likely to satisfy embryoists, that is, those who regard the embryo as a person. This paper then proposes a method of extracting HES cells, what might be called the Blastocyst Transfer Method, that meets the ethical requirements of embryoists, and it considers some possible concerns regarding this method. It concludes by encouraging future HES cell research to investigate this method.

Blastocyst↗