Who Speaks for Me?: Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth

Background: Youth in protective custody (i.e., foster care) are at higher risk for poorer physical and mental health outcomes compared with those who are not. These differences may be due in part to the lack of research on the population to create evidence-based recommendations for health care delivery. A potential contributor to this lack of research is difficulties in obtaining informed consent for empirical studies in this population. The objective of this study was to describe the approaches to obtaining informed consent in minimal risk studies of foster youth and provide recommendations for future requirements. Methods: We conducted a systematic review of the literature to characterize the informed consent approaches in published minimal risk research involving youth in foster care. We searched PubMed, CINAHL, PsychINFO, Embase, ERIC, Scopus, and EBMR. Inclusion criteria were: studies conducted in the United States, included current foster youth, minimal risk, peer reviewed, and published in English. Full text was reviewed, and individuals required to consent and assent were extracted. Results: Forty-nine publications from 33 studies were identified. Studies required 0 to 3 individuals to consent. Individuals required to give consent included case workers (16, 48%), foster caregivers (12, 36%), biological parents (7, 21%), judges (5, 15%), and guardian ad litems (2, 6%). Twenty-nine (88%) studies required the youth’s assent. The studies used 14 different combinations of individuals. One (3%) study utilized a waiver of consent. Conclusions: There is no consistent approach for obtaining informed consent for foster youth to participate in minimal risk research. Consent should ideally involve individuals with legal authority and knowledge of the individual youth’s interests and should not be burdensome. Consensus regarding consent requirements may facilitate research involving foster youth

Pragmatics development in deaf and hard of hearing children: a call to action

Although major strides have been made in supporting the linguistic development of deaf and hard of hearing (DHH) children, a high risk of pragmatic delay persists and often goes unrecognized. Pragmatic development (the growing sensitivity to one’s communication partner when producing and comprehending language in context) is fundamental to children’s social-cognitive development and to their well-being. We review the reasons why DHH children are vulnerable to pragmatic developmental challenges and the potential to create positive change. In this call to action, we then urge (1) medical providers to recognize the need to monitor for risk of pragmatic difficulty and to refer for timely intervention (beginning in infancy), (2) allied health professionals involved in supporting DHH children to incorporate development of pragmatic abilities into their work and to foster awareness among caregivers, and (3) the research community to deepen our understanding of pragmatics in DHH children with investigations that include pragmatics and with longitudinal studies that chart the paths to positive outcomes while respecting the diversity of this population. By working together, there is substantial potential to make rapid progress in lifting developmental outcomes for DHH children

Familial Autoimmune Thyroid Disease as a Risk Factor for Regression in Children with Autism Spectrum Disorder: A CPEA Study

A multicenter study of 308 children with Autism Spectrum Disorder (ASD) was conducted through the Collaborative Programs of Excellence in Autism (CPEA), sponsored by the National Institute of Child Health and Human Development, to compare the family history of autoimmune disorders in children with ASD with and without a history of regression. A history of regression was determined from the results of the Autism Diagnostic Interview-Revised (ADI-R). Family history of autoimmune disorders was obtained by telephone interview. Regression was significantly associated with a family history of autoimmune disorders (adjusted OR=1.89; 95% CI: 1.17, 3.10). The only specific autoimmune disorder found to be associated with regression was autoimmune thyroid disease (adjusted OR=2.09; 95% CI: 1.28, 3.41).Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/43035/1/10803_2005_Article_71.pd

Impact of Global Health Education on Pediatric Residency Applicants' Rank-List and Decision Process

Abstract Background: The globalization of healthcare has contributed to a rapid increase in global health education (GHE) among residency programs. However the impact of GHE on pediatric residency selection and potential barriers to GHE have not been reported

Pediatric hearing impairment caregiver experience: Impact of duration of hearing loss on parental stress

10.1016/j.ijporl.2008.08.005International Journal of Pediatric Otorhinolaryngology72111693-1703IPOT