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https://www.readbyqxmd.com/read/28550383/-you-can-carry-the-torch-now-a-qualitative-analysis-of-parents-experiences-caring-for-a-child-with-trisomy-13-or-18
#1
Joshua D Arthur, Divya Gupta
Trisomy 13 and 18 (T 13/18) are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding different perspectives regarding the appropriate management of children with T 13/18. Families were invited for open-ended interviews regarding their experiences with the medical care of a child with T 13/18 over the past 5 years. Seven of 33 invited families were surveyed; those who had spent more than 40 days in the hospital were most likely to accept the invitation (OR 8...
May 26, 2017: HEC Forum: An Interdisciplinary Journal on Hospitals' Ethical and Legal Issues
https://www.readbyqxmd.com/read/28545310/when-is-neglect-neglect-it-depends-on-who-you-ask
#2
Kelli L Dickerson, Sonia Lindner, Nicholas Scurich, Jodi A Quas
In order to identify victims of child neglect, social service workers rely heavily on referrals from concerned friends, neighbors, and others in the community. Little is known, however, about how lay individuals perceive child neglect and what factors influence their decision to make a referral. This study explored the effects of child, parent, and participant gender on laypersons' evaluations of child neglect. Participants read a case of neglect of a child by a custodial and absent parent and then rated the parents' culpability and intentionality and decided whether the parents' behavior met the legal definition of neglect...
January 1, 2017: Child Maltreatment
https://www.readbyqxmd.com/read/28544750/unexpected-ethical-dilemmas-in-sex-assignment-in-46-xy-dsd-due-to-5-alpha-reductase-type-2-deficiency
#3
Heather M Byers, Lauren H Mohnach, Patricia Y Fechner, Ming Chen, Inas H Thomas, Linda A Ramsdell, Margarett Shnorhavorian, Elizabeth A McCauley, Anne-Marie E Amies Oelschlager, John M Park, David E Sandberg, Margaret P Adam, Catherine E Keegan
Sex assignment at birth remains one of the most clinically challenging and controversial topics in 46,XY disorders of sexual development (DSD). This is particularly challenging in deficiency of 5-alpha reductase type 2 given that external genitalia are typically undervirilized at birth but typically virilize at puberty to a variable degree. Historically, most individuals with 5-alpha reductase deficiency were raised females. However, reports that over half of patients who underwent a virilizing puberty adopted an adult male gender identity have challenged this practice...
May 25, 2017: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
https://www.readbyqxmd.com/read/28538622/towards-precision-medicine-accurate-predictive-modeling-of-infectious-complications-in-combat-casualties
#4
Christopher J Dente, Matthew Bradley, Seth Schobel, Beverly Gaucher, Timothy Buchman, Allan D Kirk, Eric Elster
BACKGROUND: The biomarker profile of trauma patients may allow for the creation of models to assist bedside decision making & prediction of complications. We sought to determine the utility of modeling in the prediction of bacteremia & pneumonia in combat casualties. METHODS: This is a prospective, observational trial of patients with complex wounds treated at Walter Reed National Military Medical Center (2007-2012). Tissue, serum and wound effluent samples were collected during operative interventions until wound closure...
May 22, 2017: Journal of Trauma and Acute Care Surgery
https://www.readbyqxmd.com/read/28536925/parental-perspectives-on-pharmacological-clinical-trials-a-qualitative-study-in-down-syndrome-and-fragile-x-syndrome
#5
Victoria Reines, Krista Charen, Tracie Rosser, Arri Eisen, Stephanie L Sherman, Jeannie Visootsak
Research studies focusing on parents' perspectives of pharmacological clinical trials have not kept pace with the number of emerging pharmacologic clinical trials in Down syndrome (DS) and Fragile X syndrome (FXS). Since individuals with DS or FXS have limited cognitive ability to make decisions about their participation in clinical trials, it is important to consider the parents' perspectives and explore the ways in which decisions are made for their children. Using a semi-structured interview, we enrolled 9 parents of a child(ren) with FXS and 15 with a child with DS to analyze their views, experiences, and knowledge of pharmacological clinical trials...
May 24, 2017: Journal of Genetic Counseling
https://www.readbyqxmd.com/read/28536058/how-important-are-the-influencing-factors-to-the-decision-on-whether-to-provide-seafood-in-infant-and-young-child-feeding
#6
Sharon A Carstairs, Debbi Marais, Leone C A Craig, Kirsty Kiezebrink
Seafood is recommended as part of a healthy, balanced introductory diet however, consumption rates are low in young children. Research has previously investigated the influences to seafood consumption in consumers and non-consumers however the importance of these factors in mothers' decisions on whether to provide seafood for their child during the early years is unknown. This study aimed to measure the importance of factors that influence mothers' decisions on providing seafood for their child during infant and young child feeding (six months to four years)...
May 20, 2017: Appetite
https://www.readbyqxmd.com/read/28534462/associations-between-alcohol-dehydrogenase-genes-and-alcohol-use-across-early-and-middle-adolescence-moderation-%C3%A3-preventive-intervention
#7
H Harrington Cleveland, Gabriel L Schlomer, David J Vandenbergh, Pedro S A Wolf, Mark E Feinberg, Mark T Greenberg, Richard L Spoth, Cleve Redmond
Data from the in-school sample of the PROSPER preventive intervention dissemination trial were used to investigate associations between alcohol dehydrogenase genes and alcohol use across adolescence, and whether substance misuse interventions in the 6th and 7th grades (targeting parenting, family functioning, social norms, youth decision making, and peer group affiliations) modified associations between these genes and adolescent use. Primary analyses were run on a sample of 1,885 individuals and included three steps...
May 23, 2017: Development and Psychopathology
https://www.readbyqxmd.com/read/28533795/a-kasp-genotyping-method-to-identify-northern-watermilfoil-eurasian-watermilfoil-and-their-interspecific-hybrids
#8
Eric L Patterson, Margaret B Fleming, Kallie C Kessler, Scott J Nissen, Todd A Gaines
The invasive aquatic plant Eurasian watermilfoil (Myriophyllum spicatum L.) can hybridize with the related North American native species northern watermilfoil (M. sibiricum Kom.). Hybrid watermilfoil (M. spicatum × M. sibiricum) populations have higher fitness and reduced sensitivity to some commonly used aquatic herbicides, making management more difficult. There is growing concern that management practices using herbicides in lakes with mixed populations of watermilfoil species may further select for hybrid individuals due to the difference in herbicide sensitivity...
2017: Frontiers in Plant Science
https://www.readbyqxmd.com/read/28533154/preconception-and-prenatal-genetic-counselling
#9
REVIEW
Adonis S Ioannides
Identifying individuals at risk of having children affected by genetic conditions or congenital anomalies allows counselling that aims to inform reproductive decisions. This process takes place either at the preconception or early prenatal stage, although more options are available if risks are identified before the pregnancy. Preconception counselling covers issues that can affect the health of the mother and baby including folic acid supplementation. Carrier screening for autosomal recessive diseases, such as beta thalassaemia, has resulted in a significantly reduced incidence in many countries...
April 21, 2017: Best Practice & Research. Clinical Obstetrics & Gynaecology
https://www.readbyqxmd.com/read/28532466/baseline-and-stress-induced-levels-of-corticosterone-in-male-and-female-afrotropical-and-european-temperate-stonechats-during-breeding
#10
Beate Apfelbeck, Barbara Helm, Juan Carlos Illera, Kim G Mortega, Patrick Smiddy, Neil P Evans
BACKGROUND: Latitudinal variation in avian life histories falls along a slow-fast pace of life continuum: tropical species produce small clutches, but have a high survival probability, while in temperate species the opposite pattern is found. This study investigated whether differential investment into reproduction and survival of tropical and temperate species is paralleled by differences in the secretion of the vertebrate hormone corticosterone (CORT). Depending on circulating concentrations, CORT can both act as a metabolic (low to medium levels) and a stress hormone (high levels) and, thereby, influence reproductive decisions...
May 22, 2017: BMC Evolutionary Biology
https://www.readbyqxmd.com/read/28527066/community-pharmacies-as-epidemiological-sentinels-of-headache-first-experience-in-italy
#11
Paola Brusa, Marco Parente, Gianni Allais, Sara Rolando, Giuseppe Costa, Roberto Gnavi, Teresa Spadea, Mario Giaccone, Andrea Mandelli, Massimo Mana, Francesca Baratta, Chiara Benedetto, Gennaro Bussone
Migraine is a disabling neurovascular syndrome which affects 12-15% of the global population and it represents the third cause in years lived with disability in both males and females aged 15-49 years. Among migraineurs, the symptomatic drug abuse may be a risk factor in the development of medication overuse headache (MOH). Detecting cases of MOH is not straightforward; community pharmacists may, therefore, be in a strategic position to identify individuals who self-medicate, particularly with respect to prevent the development of MOH...
May 2017: Neurological Sciences
https://www.readbyqxmd.com/read/28520727/predictors-of-decision-ambivalence-and-the-differences-between-actual-living-liver-donors-and-potential-living-liver-donors
#12
Li-Chueh Weng, Hsiu-Li Huang, Hsiu-Hsin Tsai, Wei-Chen Lee
BACKGROUND: The decision to become a living liver donor is a stressful event. Ambivalence in decision making may result in psychological distress. Thus, the purpose of this study was to provide a description of the ambivalence of potential living liver donors, to examine the predictors of ambivalence, and to compare the ambivalence of potential living liver donors with that of actual living liver donors. METHODS: This descriptive and correlational study was conducted in a medical center from August 2013 to December 2015...
2017: PloS One
https://www.readbyqxmd.com/read/28513190/prevalence-and-correlates-of-bullying-victimisation-and-perpetration-in-a-nationally-representative-sample-of-australian-youth
#13
Hannah J Thomas, Jason P Connor, David M Lawrence, Jennifer M Hafekost, Stephen R Zubrick, James G Scott
OBJECTIVE: Bullying prevalence studies are limited by varied measurement methods and a lack of representative samples. This study estimated the national prevalence of bullying victimisation, perpetration and combined victim-perpetration experiences in a representative population-based sample of Australian youth. The relationships between the three types of bullying involvement with a range of mental health symptoms and diagnoses were also examined. METHODS: A randomly selected nationally representative sample aged 11-17 years ( N = 2967, Mage = 14...
May 1, 2017: Australian and New Zealand Journal of Psychiatry
https://www.readbyqxmd.com/read/28511689/harnessing-interactive-technologies-to-improve-health-outcomes-in-juvenile-idiopathic-arthritis
#14
REVIEW
Andrea Coda, Dean Sculley, Derek Santos, Xavier Girones, Lucie Brosseau, Derek R Smith, Joshua Burns, Keith Rome, Jane Munro, Davinder Singh-Grewal
BACKGROUND: Children and adolescents with Juvenile Idiopathic Arthritis (JIA) typically have reduced physical activity level and impaired aerobic and anaerobic exercise capacity when compared to their non-JIA counterparts. Low intensity exercise regimens appear to be safe in children with JIA and may results in improvements in overall physical function. Poor adherence to paediatric rheumatology treatment may lead to negative clinical outcomes and possibly increased disease activity. This includes symptoms such as pain, fatigue, quality of life, longer term outcomes including joint damage, as well as increase of healthcare associated costs...
May 16, 2017: Pediatric Rheumatology Online Journal
https://www.readbyqxmd.com/read/28507889/does-parental-support-influence-children-s-active-school-travel
#15
S K Mah, L Nettlefold, H M Macdonald, M Winters, D Race, C Voss, H A McKay
Today's 'backseat generation' of children is more often driven to school. Active school travel (AST) can contribute up to 30% of recommended daily physical activity. Although governed by a complex set of factors, parents are considered 'gatekeepers' of children's travel mode decisions. Therefore, we investigate the relationship between parental support and children's AST. Data were from Active Streets, Active People-Junior (British Columbia, Canada). Children self-reported travel mode to/from school for 1 week (10 trips)...
June 2017: Preventive Medicine Reports
https://www.readbyqxmd.com/read/28504327/preferences-for-prenatal-diagnosis-of-sickle-cell-disorder-a%C3%A2-discrete-choice-experiment-comparing-potential-service-users%C3%A2-and-health-care-providers
#16
Melissa Hill, Eugene Oteng-Ntim, Frida Forya, Mary Petrou, Stephen Morris, Lyn S Chitty
BACKGROUND: Non-invasive prenatal diagnosis (NIPD) for sickle-cell disorder (SCD) is moving closer to implementation and studies considering stakeholder preferences are required to underpin strategies for offering NIPD in clinical practice. OBJECTIVE: Determine service user and provider preferences for key attributes of prenatal diagnostic tests for SCD and examine views on NIPD. METHOD: A questionnaire that includes a discrete choice experiment was used to determine the preferences of service users and providers for prenatal tests that varied across three attributes: accuracy, time of test and risk of miscarriage...
May 15, 2017: Health Expectations: An International Journal of Public Participation in Health Care and Health Policy
https://www.readbyqxmd.com/read/28504212/psychological-adjustment-in-parents-of-children-born-with-atypical-genitalia-one-year-after-their-child-undergoes-genitoplasty
#17
Rebecca Eh Ellens, Dana M Bakula, Alexandria J Mullins, Kristy J Scott Reyes, Paul Austin, Laurence Baskin, Kerlly Bernabé, Earl Y Cheng, Allyson Fried, Dominic Frimberger, Denise Galan, Lynette Gonzalez, Saul Greenfield, Thomas Kolon, Bradley Kropp, Yegappan Lakshmanan, Sabrina Meyer, Theresa Meyer, Larry L Mullins, Natalie J Nokoff, Blake Palmer, Dix Poppas, Alethea Paradis, Elizabeth Yerkes, Amy B Wisniewski, Cortney Wolfe-Christensen
PURPOSE: The current study examined the psychological adjustment of parents of children born with moderate to severe genital atypia 12 months after their child underwent genitoplasty. MATERIALS AND METHODS: Parents were recruited longitudinally from a multi-center collaboration of 10 pediatric hospitals with specialty care for children with a Disorder/Difference of Sex Development and/or Congenital Adrenal Hyperplasia. Parents completed measures of depressive and anxious symptoms, illness uncertainty, quality of life, post-traumatic stress, and decisional regret...
May 11, 2017: Journal of Urology
https://www.readbyqxmd.com/read/28498037/do-parental-decision-making-patterns-predict-compliance-with-use-of-child-booster-seats
#18
Sarit Shimony-Kanat, Rosa Gofin, Anna C Kienski Woloski Wruble, Leon Mann
Booster seat use for 4-9 year olds remains the lowest of all age groups in many countries. The objective of this study is to examine whether parents' decision-making patterns, as measured by the Melbourne Decision Making Questionnaire, relate to car booster seat use. Israeli parents of 4-7 years old children (n = 398) answered a questionnaire about car safety and decision-making habits. Ninety per cent of parents reported having a booster seat; 70.5% reported consistent booster seat use in general and on short drives during the last month (booster seat use compliance index)...
May 12, 2017: International Journal of Injury Control and Safety Promotion
https://www.readbyqxmd.com/read/28496382/elements-of-family-centered-care-in-the-pediatric-intensive-care-unit-an-integrative-review
#19
Claire A Richards, Helene Starks, M Rebecca O'Connor, Ardith Z Doorenbos
This paper reports result from a systematic search and thematic analysis of qualitative literature to identify key issues related to family-centered care, behaviors, and communication skills that support the parental role and improve patient and family outcomes in the PICU. Five themes were identified: 1) sharing information; 2) hearing parental voices; 3) making decisions for or with parents; 4) negotiating roles; and 5) individualizing communication. These themes highlight several gaps between how parents want to be involved and perceive clinicians engage them in the care of their child...
June 2017: Journal of Hospice and Palliative Nursing: JHPN
https://www.readbyqxmd.com/read/28495340/investigating-the-determinants-of-chinese-adult-children-s-intention-to-use-online-health-information-for-their-aged-parents
#20
Yukun Bao, Rakibul Hoque, Shiyu Wang
BACKGROUND: The increasing number of older people and the dissemination of health information via the Internet have emerged and both are challenging to Chinese society. Available online health information highlights the importance of decision making processes, specially in relation to the elderly who almost have no online presence and depend on their adult children's help. The researchers mostly focus on parents' health information search for their children, however, they overlook the adult children's intention to use online health information for their aged parents...
June 2017: International Journal of Medical Informatics
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