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Jane Chudleigh Sarah Buckingham Jo Dignan Sandra O’Driscoll Kemi Johnson David Rees Hilary Wyatt Alison Metcalfe 《Journal of genetic counseling》2016,25(6):1215-1226
The clinical advantages of the newborn screening programme (NBS) in the UK are well described in the literature. However, there has been little exploration of the psychosocial impact on the family. This study followed the principles of grounded theory to explore parents’ experiences of receiving the initial positive NBS result for their child with cystic fibrosis (CF) or sickle cell disease (SCD). Semi-structured, qualitative interviews were conducted with 22 parents (12 mothers and 10 fathers) whose children had been diagnosed with CF or SCD via NBS and were under the age of 1 year at the time of interview. The main themes that arose from the data were; parents previous knowledge of the condition and the NBS programme, the method of delivery and parental reactions to the result, sharing the results with others, the impact on parental relationships and support strategies. Study conclusions indicate that most parents thought initial positive NBS results should be delivered by a health professional with condition specific knowledge, preferably with both parents present. Genetic counselling needs to include a focus on the impact of NBS results on parental relationships. Careful consideration needs to be given to strategies to support parents of babies who have positive NBS results both in terms of the psychological health and to assist them in sharing the diagnosis. 相似文献
214.
This research seeks to expand the current understanding of nostalgia towards childhood as it relates to consumer brand relationships and provide a framework for better understanding the phenomenon as it appears in both academic and real‐world settings. In this paper, the authors use existing literature on nostalgia and consumer interviews to define childhood brand nostalgia as a positively valenced emotional attachment to a brand because of the brand's association with fond memories of the individual's non‐recent lived past. A scale to measure an individual's childhood brand nostalgia is developed and tested to ensure convergent, discriminant, and predictive validity. The scale is found to capture individual differences in nostalgic feelings towards a single brand, and individuals are found to have varying levels of nostalgic feelings for multiple brands across multiple product categories. This demonstrates the usefulness of this scale in determining a consumer's nostalgia towards a particular brand from their childhood. Copyright © 2016 John Wiley & Sons, Ltd. 相似文献
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Pineau Noëmie Robin Alison Bulteau Samuel Thomas-Ollivier Véronique Sauvaget Anne Deschamps Thibault 《Cognitive processing》2021,22(2):291-298
Cognitive Processing - Some studies have suggested that postural balance improved after a single session of transcranial direct current stimulation (tDCS), whereas others have found minimal, if... 相似文献
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Young children often experience relational memory failures, which are thought to result from immaturity of the recollection processes presumed to be required for these tasks. However, research in adults has suggested that relational memory tasks can be accomplished using familiarity, a process thought to be mature by the end of early childhood. The goal of the present study was to determine whether relational memory performance could be improved in childhood by teaching young children memory strategies that have been shown to increase the contribution of familiarity in adults (i.e., unitization). Groups of 6- and 8-year-old children were taught to use visualization strategies that either unitized or did not unitize pictures and colored borders. Estimates of familiarity and recollection were extracted by fitting receiver operator characteristic curves (Yonelinas, Journal of Experimental Psychology: Learning, Memory, and Cognition 20, 1341–1354, 1994, Yonelinas, Memory & Cognition 25, 747–763, 1997) based on dual-process models of recognition. Bayesian analysis revealed that strategies involving unitization improved memory performance and increased the contribution of familiarity in both age groups. 相似文献
218.
The role of vision and vision deprivation in the development of executive function (EF) abilities in childhood is little understood; aspects of EF such as initiative, attention orienting, inhibition, planning and performance monitoring are often measured through visual tasks. Studying the development and integrity of EF abilities in children with congenital visual impairment (VI) may provide important insights into the development of EF and also its possible relationship with vision and non-visual senses. The current study investigates non-visual EF abilities in 18 school-age children of average verbal intelligence with VI of differing levels of severity arising from congenital disorders affecting the eye, retina, or anterior optic nerve. Standard auditory neuropsychological assessments of sustained and divided attention, phonemic, semantic and switching verbal fluency, verbal working memory, and ratings of everyday executive abilities by parents were undertaken. Executive skills were compared to age-matched typically-sighted (TS) typically-developing children and across levels of vision (mild to moderate VI [MVI] or severe to profound VI [SPVI]). The results do not indicate significant differences or deficits on direct assessments of verbal and auditory EF between the groups. However, parent ratings suggest difficulties with everyday executive abilities, with the greatest difficulties in those with SPVI. The findings are discussed as possibly reflecting increased demands of behavioral executive skills for children with VI in everyday situations despite auditory and verbal EF abilities in the typical range for their age. These findings have potential implications for clinical and educational practices. 相似文献
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Álvaro Mendes Alison Metcalfe Milena Paneque Liliana Sousa Angus J. Clarke Jorge Sequeiros 《Family process》2018,57(3):836-846
Genetic information is a family affair. With the expansion of genomic technologies, many new causal genes and variants have been established and the potential for molecular diagnoses increased, with implications not only for patients but also their relatives. The need for genetic counseling and intrafamilial circulation of information on genetic risks grew accordingly. Also, the amount and, particularly, the complexity of the information to convey multiplied. Sharing information about genetic risks with family members, however, has never been an easy matter and often becomes a source of personal and familial conflicts and distress. Ethical requisites generally prevent healthcare professionals from directly contacting their consultands' relatives (affected or still at risk), who often feel unsupported throughout that process. We discuss here the communication of genetic risks to family members. We first consider genomic testing as a basis for family‐centered health care, as opposed to a predominant focus on the individual. We reviewed the literature on sharing genetic risk information with family members, and the associated ethical issues for professionals. Some clinical cases are presented and discussed, and key issues for meeting the needs of individuals and families are addressed. We argue that genetic information is inextricably linked to the family and that communicating about genetic risks is a process grounded within the broader milieu of family relationships and functioning. We conclude for the need for a more family‐centered approach and interventions that can promote sensitive attitudes to the provision of genetic information to and within the family, as well as its inclusion in educational and training programmes for genetic healthcare professionals. 相似文献
220.
Kimberley L. M. Zonneveld Alison D. Cox Madeline M. Asaro Kieva S. Hranchuk Arezu Alami Laura D. Kelly Jan C. Frijters 《Journal of applied behavior analysis》2024,57(2):502-514
Visual inspection of single-subject data is the primary method for behavior analysts to interpret the effect of an independent variable on a dependent variable; however, there is no consensus on the most suitable method for teaching graph construction for single-subject designs. We systematically replicated and extended Tyner and Fienup (2015) using a repeated-measures between-subjects design to compare the effects of instructor-led, video-model, and no-instruction control tutorials on the graphing performance of 81 master's students with some reported Microsoft Excel experience. Our mixed-design analysis revealed a statistically significant main effect of pretest, tutorial, and posttest submissions for each tutorial group and a nonsignificant main effect of tutorial group. Tutorial group significantly interacted with submissions, suggesting that both instructor-led and video-model tutorials may be superior to providing graduate students with a written list of graphing conventions (i.e., control condition). Finally, training influenced performance on an untrained graph type (multielement) for all tutorial groups. 相似文献