Gynecologic Oncologist Views Influencing Referral to Outpatient Specialty Palliative Care

Early specialty palliative care is underutilized for patients with advanced gynecologic malignancies. We sought to understand how gynecologic oncologists’ views influence outpatient specialty palliative care referral to help inform strategies for improvement

Factors determining social participation in the first year after kidney transplantation: a prospective study

BACKGROUND: This study describes changes in social participation in the first year after kidney transplantation and examines the influence of clinical factors, health status, transplantation-related symptoms, and psychological characteristics on change in social participation. METHODS: A prospective study was performed on a cohort of primary kidney transplant recipients, transplanted between March 2002 and March 2003. Data on participation in obligatory activities (i.e., employment, education, household tasks) and leisure activities (i.e., volunteer work, assisting others, sports, clubs/associations, recreation, socializing, going out) were collected by in-home interviews (n=61) at 3 months (T1) and 1 year posttransplantation (T2). Analysis of covariance was performed. RESULTS: Data showed an increase in participation in obligatory activities and diversity of leisure participation between T1 and T2, although pre-end-stage renal disease level was not regained and differed from the general population. On T1, the majority of employed recipients were on sick leave, but returned to work on T2. Employment rate remained stable. An increase in obligatory participation was predicted by clinical factors (i.e., peritoneal dialysis, initial hospitalization), whereas change in leisure participation was related to serum albumin and cognitive capacity. No effects were found for type of donation, comorbidity, and renal function. CONCLUSIONS: We found that mainly clinical factors were associated with an increase in participation in society. Although health-status related factors and the psychological attribute self-efficacy may be related to recovery of social participation, their effect was outweighed by the strength of clinical predictors in multivariate analysis

Desperately seeking "normal": the promise and perils of living with kidney transplantation

Organ transplantation offers a dramatic example of the promises for health held out by biomedicine--and thus, a productive vantage point from which to interrogate those promises. Drawing on ethnographic research on kidney transplantation in Guadalajara, Mexico, this article examines the version of "health" offered to patients through transplantation. The paper explores patients' transplant trajectories as they move from learning to desire a transplant to actually receiving one and living with it over the long term, all within particular structuring sociocultural and political economic conditions. The article analyzes how transplanted patients are forced to come to terms with the contingent states of "health" and "normality" wrought by transplantation as they carve out an existence in the persistently liminal spaces between the roles of "sick" and "healthy," dependent patient and fully contributing family member.Transplantation Mexico Liminality

Gendering the Gift of Life: Family Politics and Kidney Donation in Egypt and Mexico.

In this article, we demonstrate how living kidney donation is a particularly gendered experience. We draw on anthropologists' contributions to understanding the globalization of reproductive technologies to argue that kidney donation similarly endangers and preserves fertility, thereby unsettling and reifying gendered familial labor. Based on fieldwork in two ethnographic sites--Egypt and Mexico--we examine how kidney donation is figured as a form of social reproduction. In both settings, kidney recipients rely almost exclusively on organs from living donors. We focus on how particular gender ideologies--as evident, for example, in the trope of the "self-sacrificing mother"--can serve as a cultural technology to generate donations in an otherwise organ-scarce medical setting. Alternatively, transplantation can disrupt gender norms and reproductive viability. In demonstrating the pervasiveness of gendered tropes in the realm of transplantation, we unsettle assumptions about the "family" as the locus of pure, altruistic donation

Gendering the Gift of Life: Family Politics and Kidney Donation in Egypt and Mexico.

In this article, we demonstrate how living kidney donation is a particularly gendered experience. We draw on anthropologists' contributions to understanding the globalization of reproductive technologies to argue that kidney donation similarly endangers and preserves fertility, thereby unsettling and reifying gendered familial labor. Based on fieldwork in two ethnographic sites--Egypt and Mexico--we examine how kidney donation is figured as a form of social reproduction. In both settings, kidney recipients rely almost exclusively on organs from living donors. We focus on how particular gender ideologies--as evident, for example, in the trope of the "self-sacrificing mother"--can serve as a cultural technology to generate donations in an otherwise organ-scarce medical setting. Alternatively, transplantation can disrupt gender norms and reproductive viability. In demonstrating the pervasiveness of gendered tropes in the realm of transplantation, we unsettle assumptions about the "family" as the locus of pure, altruistic donation

Offering preimplantation genetic testing for monogenic disorders (PGT-M) for conditions with reduced penetrance or variants of uncertain significance: Ethical insight from U.S. laboratory genetic counselors

Preimplantation genetic testing for monogenic disorders (PGT-M) was originally developed to identify embryos affected with serious childhood-onset disorders, but its use has recently broadened. Guidance on the use of PGT-M in the United States (U.S.) is currently limited, with no formal laws or guidelines established on its use. The goals of this study were to determine for which types of conditions U.S. laboratories currently do not offer PGT-M, to explore ethical considerations U.S. laboratory genetic counselors (GCs) take into consideration when deciding to accept or reject a PGT-M request, and to explore whether U.S. laboratory GCs believe PGT-M should be offered for conditions with reduced penetrance or for variants of uncertain significance (VUS). Qualitative analysis of semi-structured interviews with nine genetic counselors, from five different PGT-M laboratories, was conducted. Participants were required to be GCs working at a PGT-M laboratory in the U.S. and either actively counsel patients on PGT-M or determine a patient\u27s eligibility for PGT-M. Two participants reported their separate laboratories have no limitations for allowable PGT-M testing, while the other seven participants representing three other laboratories reported having limitations. The main ethical consideration GCs reported considering when deciding to accept or reject a PGT-M request was patient autonomy, with a focus on the patient understanding risks of the testing. All participants reported believing PGT-M should be allowable for conditions with reduced penetrance and VUS, with all participants stating their respective laboratories allow for this currently. However, all participants reported a lack of sufficient guidelines and that having guidelines from a professional organization would be beneficial to their practice. In conclusion, lack of current guidelines in the United States has created discrepancies between PGT-M laboratories. PGT-M laboratory GCs support the use of PGT-M for conditions with reduced penetrance and VUS with informed consent. The need for guidelines is supported

Advancing Health Disparities Research Within the Health Care System: A Conceptual Framework

We provide a framework for health services–related researchers, practitioners, and policy makers to guide future health disparities research in areas ranging from detecting differences in health and health care to understanding the determinants that underlie disparities to ultimately designing interventions that reduce and eliminate these disparities. To do this, we identified potential selection biases and definitions of vulnerable groups when detecting disparities. The key factors to understanding disparities were multilevel determinants of health disparities, including individual beliefs and preferences, effective patient–provider communication; and the organizational culture of the health care system. We encourage interventions that yield generalizable data on their effectiveness and that promote further engagement of communities, providers, and policymakers to ultimately enhance the application and the impact of health disparities research