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Caregivers of developmental delayed children

S-J Chiu, P-T Chen, Y-T Chou, L-Y Chien
BACKGROUND: Early intervention (EI) practitioners provide individualised family-centred services to enhance the quality of life (QOL) of families of children with developmental delay (DD). Family QOL (FQOL) could be an important outcome indictor for EI, but there is no measurement tool for FQOL in Mandarin Chinese. The purpose of this study was to translate the Beach Centre FQOL Scale (BCFQOL) into Mandarin Chinese and to examine the psychometric properties of the scale in families of children with DD...
January 16, 2017: Journal of Intellectual Disability Research: JIDR
Madhavi Prasad, Rhiannon Hicks, Melissa MacKay, Cam-Tu Nguyen, Craig Campbell
BACKGROUND: Congenital myotonic dystrophy (CDM) is a neuromuscular disorder caused by a CTG triplet repeat expansion in the DMPK gene. In addition to the expected motor delay, affected children often have significant developmental disability in language and cognitive realms, which ultimately impacts on quality of life. OBJECTIVE: In a prospective cohort of children with CDM to 1) present the profile of language and motor developmental milestones, and 2) describe their early childhood health related quality of life (HRQOL)...
August 30, 2016: Journal of Neuromuscular Diseases
Mark Tomlinson, Sarah Skeen, Marguerite Marlow, Lucie Cluver, Peter Cooper, Lynne Murray, Shoeshoe Mofokeng, Nathene Morley, Moroesi Makhetha, Sarah Gordon, Tonya Esterhuizen, Lorraine Sherr
BACKGROUND: Since 1990, the lives of 48 million children under the age of 5 years have been saved because of increased investments in reducing child mortality. However, despite these unprecedented gains, 250 million children younger than 5 years in low- and middle-income countries (LMIC) cannot meet their developmental potential due to poverty, poor health and nutrition, and lack of necessary stimulation and care. Lesotho has high levels of poverty, HIV, and malnutrition, all of which affect child development outcomes...
November 9, 2016: Trials
Gail Hornor, Beth A Fischer
INTRODUCTION: The purposes of this study were to describe child demographics, familial psychosocial factors, and sexual abuse case characteristics in children experiencing sexual abuse revictimization before the age of 18 years, and to compare them with children not identified as experiencing revictimization. METHOD: A retrospective chart review was conducted from both the revictimization group and the one-assessment group and reviewed for child sexual abuse case characteristics, familial psychosocial characteristics, and child demographic information...
October 2016: Journal of Forensic Nursing
A J Spittle, J Olsen, A Kwong, L W Doyle, P B Marschik, C Einspieler, Jly Cheong
INTRODUCTION: Infants born extremely preterm (EP; <28 weeks' gestation) and/or with extremely low birth weight (ELBW; <1000 g birth weight) are at increased risk for adverse neurodevelopmental outcomes. However, it is challenging to predict those EP/ELBW infants destined to have long-term neurodevelopmental impairments in order to target early intervention to those in most need. The General Movements Assessment (GMA) in early infancy has high predictive validity for neurodevelopmental outcomes in preterm infants...
October 3, 2016: BMJ Open
Melissa L González, Karin Stern
BACKGROUND: Recent literature highlights the association between behavioral difficulties and the presence of feeding problems in children with an Autism Spectrum Disorder (ASD) relative to children with ASD without feeding problems. However, it is not clear to what extent behavior problems (outside of the meal setting) occur in children with feeding problems without comorbid ASD. AIMS: The purpose is to describe co-occurring behavioral difficulties of a sample of children with severe food refusal/selectivity and examine potential predictors of behavioral difficulties outside of the meal context...
November 2016: Research in Developmental Disabilities
Pamela M Murnane, Stacy-Lee Sigamoney, Francoise Pinillos, Stephanie Shiau, Renate Strehlau, Faeezah Patel, Afaaf Liberty, Elaine J Abrams, Stephen Arpadi, Ashraf Coovadia, Avy Violari, Louise Kuhn
How and when to disclose a positive HIV diagnosis to an infected child is a complex challenge for caregivers and healthcare workers. With the introduction of antiretroviral therapy, pediatric HIV infection has transitioned from a fatal disease to a lifelong chronic illness, thus increasing the need to address the disclosure process. As HIV-infected children mature, begin to take part in management of their own health care, and potentially initiate HIV-risk behaviors, understanding the nature of their infection becomes essential...
August 29, 2016: AIDS Care
R Strehlau, L Kuhn, E J Abrams, A Coovadia
CONTEXT: HIV infection in infancy may influence the developing brain, leading to adverse neurodevelopmental consequences. OBJECTIVE: We aim to describe neurodevelopmental characteristics of a cohort of HIV-infected infants and young children prior to antiretroviral therapy (ART) initiation and after achieving viral suppression. METHODS: As part of the Neverest 2 trial, 195 HIV-infected children under 2 years of age were assessed using the Ages and Stages Questionnaire (ASQ) prior to ART initiation and at subsequent age-appropriate time points after ART had been started...
August 22, 2016: Child: Care, Health and Development
James P Guevara, Brooke Rothman, Elizabeth Brooks, Marsha Gerdes, Fayetta McMillon-Jones, Katherine Yun
INTRODUCTION: Few eligible children participate in early intervention (EI) programs. The objective of this study was to determine feasibility and outcomes of a novel patient navigation program on EI referrals among a diverse group of at-risk children. METHODS: During a 6-month period, a patient navigator was assigned to an urban pediatric clinic to engage families, provide education on early child development and EI, and assist families with completing multidisciplinary evaluations...
September 2016: Families, Systems & Health: the Journal of Collaborative Family Healthcare
Rebecca Caesar, Roslyn N Boyd, Paul Colditz, Giovani Cioni, Robert S Ware, Kaye Salthouse, Julie Doherty, Maxine Jackson, Leanne Matthews, Tom Hurley, Anthony Morosini, Clare Thomas, Laxmi Camadoo, Erica Baer
INTRODUCTION: Over 80% of very preterm (<32 weeks) and very low birthweight (<1500 g) infants will have either typical development (TD) or mild developmental delay (MDD) in multiple domains. As differentiation between TD and MDD can be difficult, infants with MDD often miss opportunities for intervention. For many clinicians, the ongoing challenge is early detection of MDD without over servicing the population. This study aims to: (1) identify early clinical biomarkers for use in this population to predict and differentiate between TD and MDD at 24 months corrected age...
2016: BMJ Open
Alison B Wismer Fries, Seth D Pollak
Children who experience early caregiving neglect are very likely to have problems developing and maintaining relationships and regulating their social behavior. One of the earliest manifestations of this problem is reflected in indiscriminate behavior, a phenomenon where young children do not show normative wariness of strangers or use familiar adults as sources of security. To better understand the developmental mechanisms underlying the emergence of these problems, this study examined whether institutionally reared children, who experienced early social neglect, had difficulty associating motivational significance to visual stimuli...
May 19, 2016: Developmental Science
A N Norona, B L Baker
BACKGROUND: Emotion regulation has been identified as a robust predictor of adaptive functioning across a variety of domains (Aldao et al. ). Furthermore, research examining early predictors of competence and deficits in ER suggests that factors internal to the individual (e.g. neuroregulatory reactivity, behavioural traits and cognitive ability) and external to the individual (e.g. caregiving styles and explicit ER training) contribute to the development of ER (Calkins ). Many studies have focused on internal sources or external sources; however, few have studied them simultaneously within one model, especially in studies examining children with developmental delays (DD)...
April 22, 2016: Journal of Intellectual Disability Research: JIDR
Sumithra Selvam, Tinku Thomas, Priya Shetty, Jianjun Zhu, Vijaya Raman, Deepti Khanna, Ruchika Mehra, Anura V Kurpad, Krishnamachari Srinivasan
Assessment of developmental milestones based on locally developed norms is critical for accurate estimate of overall development of a child's cognitive, behavioral, social, and emotional development. A cross-sectional study was done to develop age specific norms for developmental milestones using Vineland Adaptive Behavior Scales (VABS-II) (Sparrow, Cicchetti, & Balla, 2005) for apparently healthy children from 2 to 5 years from urban Bangalore, India, and to examine its association with anthropometric measures...
December 2016: Psychological Assessment
Maribel Muñoz, Adrianne Nelson, Maureen Johnson, Nancy Godoy, Esther Serrano, Engerid Chagua, Jesica Valdivia, Janeth Santacruz, Milagros Wong, Lenka Kolevic, Betsy Kammerer, Clemente Vega, Martha Vibbert, Shannon Lundy, Sonya Shin
BACKGROUND: In many resource-poor settings such as Peru, children affected by HIV have a high prevalence of neurodevelopmental delays (NDDs) and remain excluded from adequate treatment. METHODS: Community health workers (CHWs) administered NDD screening instruments to assess child development and associated caregiver and household factors in 14 HIV-affected parent-child dyads. Focus group discussion with caregivers was conducted to explore their needs and behaviors around early child stimulation and to assess their perceptions of the screening experience...
February 25, 2016: Journal of the International Association of Providers of AIDS Care
Carolyn G DiGuiseppi, Julie L Daniels, Daniele M Fallin, Steven A Rosenberg, Laura A Schieve, Kathleen C Thomas, Gayle C Windham, Cynthia W Goss, Gnakub N Soke, Dustin W Currie, Alison B Singer, Li-Ching Lee, Pilar Bernal, Lisa A Croen, Lisa A Miller, Jennifer A Pinto-Martin, Lisa M Young, Diana E Schendel
BACKGROUND: The Study to Explore Early Development (SEED) is designed to enhance knowledge of autism spectrum disorder characteristics and etiologies. OBJECTIVE: This paper describes the demographic profile of enrolled families and examines sociodemographic differences between children with autism spectrum disorder and children with other developmental problems or who are typically developing. METHODS: This multi-site case-control study used health, education, and birth certificate records to identify and enroll children aged 2-5 years into one of three groups: 1) cases (children with autism spectrum disorder), 2) developmental delay or disorder controls, or 3) general population controls...
July 2016: Disability and Health Journal
Albert L Siu, Kirsten Bibbins-Domingo, David C Grossman, Linda Ciofu Baumann, Karina W Davidson, Mark Ebell, Francisco A R García, Matthew Gillman, Jessica Herzstein, Alex R Kemper, Alex H Krist, Ann E Kurth, Douglas K Owens, William R Phillips, Maureen G Phipps, Michael P Pignone
DESCRIPTION: New US Preventive Services Task Force (USPSTF) recommendation on screening for autism spectrum disorder (ASD) in young children. METHODS: The USPSTF reviewed the evidence on the accuracy, benefits, and potential harms of brief, formal screening instruments for ASD administered during routine primary care visits and the benefits and potential harms of early behavioral treatment for young children identified with ASD through screening. POPULATION: This recommendation applies to children aged 18 to 30 months who have not been diagnosed with ASD or developmental delay and for whom no concerns of ASD have been raised by parents, other caregivers, or health care professionals...
February 16, 2016: JAMA: the Journal of the American Medical Association
Phoebe Kajubi, Susan Reynolds Whyte, David Kyaddondo, Anne Ruhweza Katahoire
INTRODUCTION: HIV treatment and disclosure guidelines emphasize the importance of communicating diagnosis and treatment to infected children in ways that are appropriate to children's developmental stage and age. Minimal attention, however, has been given to communication challenges confronted by HIV-infected children and their caregivers. This study examined the tensions between children and their caregivers arising from differing perspectives regarding when and what to communicate about antiretroviral therapy (ART)...
2016: PloS One
Jeannie van der Linde, De Wet Swanepoel, Frances P Glascoe, E M Louw, Jannie F M Hugo, Bart Vinck
BACKGROUND: For optimal development young children need warm, responsive, enriched and communicative environments for learning social, language, and other skills. Infants and toddlers exposed to psychosocial risk lack enriched environments and may present with communication delays. AIM: To investigate the relationship between psychosocial risks and communication delays in infants from underserved communities in South Africa. SETTING: Primary healthcare facilities in Tshwane district, South Africa...
2015: African Journal of Primary Health Care & Family Medicine
Emily K Snell, Annemarie H Hindman, Jay Belsky
Evocative effects of child characteristics on the quality and quantity of child care were assessed in two studies using longitudinal data from the NICHD Study of Early Child Care. We focus on the influence of child characteristics on two important aspects of the child care experience: language stimulation provided by caregivers and quantity of care. In Study 1, associations between the developmental status of children aged 15 to 54 months and the language stimulation provided by their caregivers were examined using path models, and longitudinal child effects were detected across the earliest time points of the study...
November 2015: Development and Psychopathology
Renfu Luo, Yaojiang Shi, Huan Zhou, Ai Yue, Linxiu Zhang, Sean Sylvia, Alexis Medina, Scott Rozelle
OBJECTIVES: Research increasingly indicates the importance of the nutritional programming that occurs in the first 2-3 years of life. Quality nutrition during this brief window has been shown to have large and significant effects on health and development throughout childhood and even into adulthood. Despite the widespread understanding of this critical window, and the long-term consequences of leaving nutritional deficiencies unaddressed, little is known about the status of infant nutrition in rural China, or about the relationship between infant nutrition and cognitive development in rural China...
2015: BMJ Open
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