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Religious Coping in Parents of Children with Down Syndrome: A Systematic Review of the Literature.
J Relig Health
January 2025
Divisions of Pediatric Neurology and Genetics, and Developmental-Behavioral Pediatrics Department of Pediatrics, Faculty of Medicine, Necmettin Erbakan University, 42090, Meram, Konya, Türkiye.
Having a child with Down syndrome (DS) is stressful for families. Social, physical, economic and emotional difficulties are the most challenging stressors for parents of children with DS. Therefore, parents who have children with DS have used various types of coping strategies.
View Article and Find Full Text PDFReturning genetic risk information for hereditary cancers to participants in a population-based cohort study in Japan.
J Hum Genet
January 2025
Tohoku Medical Megabank Organization, Tohoku University, Sendai, Miyagi, Japan.
Large-scale population cohort studies that collect genomic information are tasked with returning an assessment of genetic risk for hereditary cancers to participants. While several studies have applied to return identified genetic risks to participants, comprehensive surveys of participants' understanding, feelings, and behaviors toward cancer risk remain to be conducted. Here, we report our experience and surveys of returning genetic risks to 100 carriers of pathogenic variants for hereditary cancers identified through whole genome sequencing of 50 000 individuals from the Tohoku Medical Megabank project, a population cohort study.
View Article and Find Full Text PDFFrequency and reasons that parents decline genetic testing for critically ill neonates.
Genet Med Open
October 2024
The Children's Hospital of Philadelphia, Philadelphia, PA.
Purpose: Current literature reports strong support among parents for genetic testing for ill neonates; yet, some parents decline this testing for unknown reasons. We aimed to document the proportion of parents who decline, describe their clinical and demographic characteristics, and categorize their rationales.
Methods: We reviewed medical records to collect and compare clinical and demographic information for patients whose parents consented to and declined recommended genetic testing.
Understanding Cancer Treatment Decision Making Among Cancer Survivors: Weighing Cancer Recurrence Versus Cardiotoxicity.
Psychooncology
January 2025
Integrative Biological and Behavioral Sciences, Division of Extramural Scientific Programs, National Institute on Minority Health and Health Disparities, Rockville, Maryland, USA.
Background: Nearly 20% of US cancer survivors develop cardiovascular disease (CVD) from cardiotoxic cancer treatments. Patients and providers may consider alternative treatments to lower cardiotoxicity risk, but these may be less effective at preventing relapse/recurrence, presenting a difficult tradeoff.
Aims: This study explored survivors' cancer treatment decision-making when weighing this tradeoff.
Are Department Heads Ready for Change? Leveraging a Leadership Action Team to Advance Teaching Evaluation Practices.
CBE Life Sci Educ
March 2025
Department of Genetics, University of Georgia, Athens, GA 30602.
Teaching evaluation at many institutions is insufficient to support, recognize, and reward effective teaching. We developed a long-term intervention to support science, technology, engineering, and mathematics (STEM) department heads in advancing teaching evaluation practices. We describe the intervention and systematically investigate its impact on departmental practices within a research-intensive university.
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