Turnbull AP, Summers JA, Lee SH
… +1 more, Kyzar K
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979209
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The purpose of this review is to (a) document the current status of conceptualizing and measuring family outcomes related to having a member with an intellectual disability and (b) determine the extent to which family re...The purpose of this review is to (a) document the current status of conceptualizing and measuring family outcomes related to having a member with an intellectual disability and (b) determine the extent to which family research focuses on internal family characteristics as contrasted to external family support. The reviewers collected 28 articles using the terms well-being, adaptation, family functioning, or family quality of life in the title. Results of our analyses are presented as a comparison between well-being, adaptation, and family functioning articles in one group and family quality of life articles in a second group. Both groups lacked explicit conceptual definitions, theory, and random/representative samples. The articles placed an undue emphasis on maternal participation, and tended to report a single family member score as representative of the whole family. Two major differences between the groups was a tendency for family quality of life studies to be grounded in conceptual frameworks and focus on new instrument development. Recommendations for future research directions are included.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979208
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A meta-analysis of 47 studies investigating the relationship between family-centered helpgiving practices and parent, family, and child behavior and functioning is reported. The studies included more than 11,000 particip...A meta-analysis of 47 studies investigating the relationship between family-centered helpgiving practices and parent, family, and child behavior and functioning is reported. The studies included more than 11,000 participants from seven different countries. Data analysis was guided by a practice-based theory of family-centered helpgiving that hypothesized direct effects of relational and participatory helpgiving practices on self-efficacy beliefs and parent, family, and child outcomes. Results showed that the largest majority of outcomes were related to helpgiving practices with the strongest influences on outcomes most proximal and contextual to help giver/help receiver exchanges. Findings are placed in the context of a broader-based social systems framework of early childhood intervention and family support.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979207
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Maternal depression in families having a child with a disability has been the subject of considerable research over the past 25 years. This review was designed to describe the literature on maternal depression, critique...Maternal depression in families having a child with a disability has been the subject of considerable research over the past 25 years. This review was designed to describe the literature on maternal depression, critique its research methodology, identify consensus findings across studies, and make recommendations for future research. A particular emphasis is on the distinction between exhibiting depressive symptoms and meeting clinical criteria for a depressive disorder, how or whether research studies made this distinction, and implications for our understanding of maternal adaptation to disability in a family member. Of the 42 articles reviewed, only eight were clinically diagnosed depression; most of them used a scale rating depressive symptoms. Across the studies, mothers of children with disabilities generally exhibited a higher than average rate of depressive symptoms and are more at risk for clinical depression, but the incidence may be lower than reported in previous literature. Child behavior problems, maternal stress, coping style, and support were consistently associated with depressive symptoms. We conclude that we know relatively little about clinical depression in mothers of children with disabilities. The distinction between clinical depression and depressive symptoms may be important in conceptualizing how a child with a disability can influence family members and the nature of support that may need to be provided. Future research should incorporate gold standard diagnostic tools and assess history, severity, and type of depression. Research is also needed to study treatments to reduce the occurrence of both depressive symptoms and clinical depression.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979206
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Expressed emotion (EE) is a measure of the affective relationship between two people characterized by criticism, hostility, and emotionally over-involved attitudes. Outside of the field of intellectual disabilities, ther...Expressed emotion (EE) is a measure of the affective relationship between two people characterized by criticism, hostility, and emotionally over-involved attitudes. Outside of the field of intellectual disabilities, there has been considerable interest in EE as an environmental marker that explains variance in the severity and/or course of a number of psychiatric disorders. Researchers have also studied EE in parents and found strong associations with children's behavior problems. In this review, we focus on the data from 11 published studies of EE in families of children and adults with intellectual disabilities. We conclude that there is evidence for the presence of high EE in some families, and that this alone should concern researchers and clinicians and set an agenda for considerable future research effort. We also note a lack of attention to the measurement of EE in intellectual disability. In terms of the existing evidence base, we suggest that there is support for the hypothesis that behavior problems in children and adults with intellectual disabilities may be related to high EE in parents, and a small amount of data predicting over time support the putative causal effect of high EE on maintaining or exacerbating behavior problems. Given that EE is perhaps best conceptualized as the result of an interaction between caregivers and those cared for, there is a need to explore interventions that may help to remediate high EE within families. It is also important to understand from this position that EE may be a normative part of the experience of caring for someone under very stressful circumstances and not something for which families are blamed. Other future research priorities and some implications for practice are also discussed.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979204
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This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual,...This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual, and theoretical contributions of this approach to the study of mental retardation. Sociocultural studies examine families within their cultural, historical, and sociopolitical contexts. This type of research is comparative across different cultural groups, but is not limited to such comparisons. Sociocultural studies use varied theories and methods, but they share a focus on families' coproduction of meanings and practices related to intellectual disability; families' responses and adaptations to disability; and how their understandings and experiences are shaped within larger social institutions and inequities. Sociocultural approaches take into account community contexts that matter to families with members with mental retardation or developmental delay, and they examine the broader systems that define and position individuals with disabilities and their families. As a whole, these studies provide a more experiential and holistic view of families' beliefs and adaptations within sociopolitical worlds, and offer new tools by which to study the families of children with developmental delays within and across different cultural groups.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979203
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When developmental concerns arise in children, a clinical assessment focuses on the child's developmental profile to achieve three goals (1) determine diagnosis, (2) develop interventions, and (3) evaluate progress. Pare...When developmental concerns arise in children, a clinical assessment focuses on the child's developmental profile to achieve three goals (1) determine diagnosis, (2) develop interventions, and (3) evaluate progress. Parents often have needs during this time that are not addressed by professionals because of the exclusive focus on the child during the evaluation. In this article, we suggest that clinicians take a "systems" approach to the assessment process by recognizing how the well being of family members can impact a child with a developmental disability. We review systems theory and its conceptualization of individual functioning and discuss how parental well-being differs according to child diagnosis. Finally we suggest a systems-based model to use during the assessment process.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979202
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A meta-analysis of the group intervention research for parents of children with developmental disabilities was conducted in order to characterize the efficacy of treatments in reducing depressive symptoms and other forms...A meta-analysis of the group intervention research for parents of children with developmental disabilities was conducted in order to characterize the efficacy of treatments in reducing depressive symptoms and other forms of psychological distress associated with stress in parents of children with developmental disabilities. An extensive search led to the identification of 17 studies which were divided into three categories for comparative purposes: parenting education studies usually based on behavioral parent training, coping skills education studies based primarily on cognitive behavioral training, and studies that combined these methods along with other support services. Studies were rated for the quality of the research designs and of the reports. Consistent positive benefits were found in the form of reductions in parents' distress, and these effects were comparable to those reported in other syntheses of parenting interventions for parents of children without disabilities. The studies were evaluated in order to assess whether or not they met standards for established evidence-based practices. On the basis of the quality and number of the randomized trials, we present evidence to support the claim that there are established evidence-based interventions for reducing psychological distress at least in middle-class mothers in the short term. The interventions for fathers are promising as are the data on somewhat longer-term effects. The need for replications with a more diverse group of parents and longer-term follow-up were discussed. Multiple component interventions addressing both parent well-being and behavioral parent training were significantly more effective than either behavioral parent training or cognitive behavioral training along.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979201
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There is growing evidence that cumulative exposure to highly responsive parenting styles throughout the early childhood period may provide a variety of important child benefits in terms of language, cognitive, social, an...There is growing evidence that cumulative exposure to highly responsive parenting styles throughout the early childhood period may provide a variety of important child benefits in terms of language, cognitive, social, and emotional development. We view maternal responsivity as a dynamic construct of central importance to the development of children with intellectual disabilities just as it is for typically developing children. In this study, we selectively review the theoretical and conceptual evidence for the effects of responsivity on development, discuss factors known to influence responsivity including the nature of a child's disability, and review intervention approaches intended to enhance maternal responsivity. We conclude with a set of recommendations for future research.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17979200
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In this article, we review the literature on siblings of individuals with autism spectrum disorders (ASD) from a lifespan developmental perspective, from infancy through adulthood, focusing on the sibling relationship an...In this article, we review the literature on siblings of individuals with autism spectrum disorders (ASD) from a lifespan developmental perspective, from infancy through adulthood, focusing on the sibling relationship and sibling well-being. We situate this review within the larger body of research on siblings of individuals with developmental disabilities (DD) across the lifespan. We then consider the genetic aspects of ASDs and their implications for siblings. We conclude that there is an evidence of atypical social and communication development in some siblings of children with an ASD during infancy. During childhood and adolescence, siblings describe both positive and negative aspects of their sibling relationship and there is some evidence that siblings of children with an ASD may be at heightened risk for social and behavioral adjustment problems. The limited research on adulthood suggests that lack of closeness in the sibling relationship and social and emotional difficulties may continue. We encourage more attention focused on developmental issues, specifically with respect to samples in narrower age groups and in longitudinal research. Finally, we note the variability in sibling outcomes, and suggest further examination of potential moderating and mediating factors, including genetic predispositions.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910090
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Down syndrome (DS) is the most commonly identified genetic form of mental retardation and the leading cause of specific birth defects and medical conditions. Traditional epidemiological studies to determine the prevalenc...Down syndrome (DS) is the most commonly identified genetic form of mental retardation and the leading cause of specific birth defects and medical conditions. Traditional epidemiological studies to determine the prevalence, cause, and clinical significance of the syndrome have been conducted over the last 100 years. DS has been estimated to occur in approximately 1 in 732 infants in the United States, although there is some evidence that variability in prevalence of estimates exist among racial/ethnic groups. Progress has been made in characterizing the specific types of chromosome errors that lead to DS and in identifying associated factors that increase the risk of chromosome 21 malsegregation, i.e., advanced maternal age and recombination. Studies to examine the variability of the presence of specific DS-associated birth defects and medical conditions provide evidence for genetic and environmental modifiers. Here, we provide a brief survey of studies that address the current state of the field and suggest gaps in research that can soon be filled with new multidisciplinary approaches and technological advances.
Salehi A, Faizi M, Belichenko PV
… +1 more, Mobley WC
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910089
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Down Syndrome (DS) caused by trisomy 21 is characterized by a variety of phenotypes and involves multiple organs. Sequencing of human chromosome 21 (HSA21) and subsequently of its orthologues on mouse chromosome 16 have...Down Syndrome (DS) caused by trisomy 21 is characterized by a variety of phenotypes and involves multiple organs. Sequencing of human chromosome 21 (HSA21) and subsequently of its orthologues on mouse chromosome 16 have created an unprecedented opportunity to explore the complex relationship between various DS phenotypes and the extra copy of approximately 300 genes on HSA21. Advances in genetics together with the ability to generate genetically well-defined mouse models have been instrumental in understanding the relationships between genotype and phenotype in DS. Indeed, elucidation of these relationships will play an important role in understanding the pathophysiological basis of this disorder and helping to develop therapeutic interventions. A successful example of using such a strategy is our recent studies exploring the relationship between failed nerve growth factor (NGF) transport and amyloid precursor protein (App) overexpression. We found that increased dosage of the gene for App is linked to failed NGF signaling and cholinergic neurodegeneration in a mouse model of DS. Herein, we discuss several mouse models of DS and explore the emergence of exciting new insights into genotype-phenotype relationships, particularly those related to nervous system abnormalities. An important conclusion is that uncovering these relationships is enhanced by working from carefully defined phenotypes to the genes responsible.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910087
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Down syndrome (DS) is associated with abnormalities in multiple organ systems and a characteristic phenotype that includes numerous behavioral features. Language, however, is among the most impaired domains of functionin...Down syndrome (DS) is associated with abnormalities in multiple organ systems and a characteristic phenotype that includes numerous behavioral features. Language, however, is among the most impaired domains of functioning in DS and, perhaps, also the greatest barrier to independent meaningful inclusion in the community. In this article, we review what is known about the extent, nature, and correlates of the language and related problems of individuals with Down syndrome. In doing so, we focus largely on the syndrome-specific features of the language phenotype, although we also consider within-syndrome variation. The review focuses on the prelinguistic foundations of language and the major components of language (i.e., vocabulary, syntax, and pragmatics). We also consider two topics in the treatment and education of individuals with DS: prelinguistic communication intervention and the acquisition of literacy skills.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910086
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Down syndrome (DS) is the most common genetic cause of significant intellectual disability in the human population, occurring in roughly 1 in 700 live births. The ultimate cause of DS is trisomy of all or part of the set...Down syndrome (DS) is the most common genetic cause of significant intellectual disability in the human population, occurring in roughly 1 in 700 live births. The ultimate cause of DS is trisomy of all or part of the set of genes located on chromosome 21. How this trisomy leads to the phenotype of DS is unclear. The completion of the DNA sequencing and annotation of the long arm of chromosome 21 was a critical step towards understanding the genetics of the phenotype. However, annotation of the chromosome continues and the functions of many genes on chromosome 21 remain uncertain. Recent findings about the structure of the human genome and of chromosome 21, in particular, and studies on mechanisms of gene regulation indicate that various genetic mechanisms may be contributors to the phenotype of DS and to the variability of the phenotype. These include variability of gene expression, the activity of transcription factors both encoded on chromosome 21 and encoded elsewhere in the genome, copy number polymorphisms, the function of conserved nongenic regions, microRNA activities, RNA editing, and perhaps DNA methylation. In this manuscript, we describe current knowledge about these genetic complexities and their likely importance in the context of DS. We identify gaps in current knowledge and suggest priorities to fill these gaps.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910085
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Down syndrome (DS) is characterized by increased mortality rates, both during early and later stages of life, and age-specific mortality risk remains higher in adults with DS compared with the overall population of peopl...Down syndrome (DS) is characterized by increased mortality rates, both during early and later stages of life, and age-specific mortality risk remains higher in adults with DS compared with the overall population of people with mental retardation and with typically developing populations. Causes of increased mortality rates early in life are primarily due to the increased incidence of congenital heart disease and leukemia, while causes of higher mortality rates later in life may be due to a number of factors, two of which are an increased risk for Alzheimer's disease (AD) and an apparent tendency toward premature aging. In this article, we describe the increase in lifespan for people with DS that has occurred over the past 100 years, as well as advances in the understanding of the occurrence of AD in adults with DS. Aspects of the neurobiology of AD, including the role of amyloid, oxidative stress, Cu/ZN dismutase (SOD-1), as well as advances in neuroimaging are presented. The function of risk factors in the observed heterogeneity in the expression of AD dementia in adults with DS, as well as the need for sensitive and specific biomarkers of the clinical and pathological progressing of AD in adults with DS is considered.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910084
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Down syndrome is the most prevalent cause of intellectual impairment associated with a genetic anomaly, in this case, trisomy of chromosome 21. It affects both physical and cognitive development and produces a characteri...Down syndrome is the most prevalent cause of intellectual impairment associated with a genetic anomaly, in this case, trisomy of chromosome 21. It affects both physical and cognitive development and produces a characteristic phenotype, although affected individuals vary considerably with respect to severity of specific impairments. Studies focusing on the cognitive characteristics of Down syndrome were reviewed, and while performance in most areas could be predicted based upon overall intellectual disability, relative weaknesses were consistently found to be associated with expressive language, syntactic/morphosyntactic processing, and verbal working memory. This profile of uneven deficits could result from a failure to develop typically automatic processing for speech perception and production, and this possibility is discussed along with its implications for intervention.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910083
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The years 2006 and 2007 saw the publication of three new and different approaches to prevention or amelioration of Down syndrome effects on the brain and cognition. We describe the animal model systems that were critical...The years 2006 and 2007 saw the publication of three new and different approaches to prevention or amelioration of Down syndrome effects on the brain and cognition. We describe the animal model systems that were critical to this progress, review these independent breakthrough studies, and discuss the implications for therapeutic approaches suggested by each.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910081
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To understand the families of offspring with Down syndrome, this article begins by describing the change in orientation--from "negative" to "stress-and-coping" perspectives--in studies of families of offspring with disab...To understand the families of offspring with Down syndrome, this article begins by describing the change in orientation--from "negative" to "stress-and-coping" perspectives--in studies of families of offspring with disabilities. In reviewing the existing studies, mothers, fathers, and siblings cope slightly better than family members of persons with other disabilities, a phenomenon called the "Down syndrome advantage." Beyond this more general finding, however, much remains unknown. Most studies examine only parental or sibling levels of stress or coping, leaving unknown the marital, occupational, health, educational, and other "real-world" outcomes for these family members. Increased research attention is needed to understand the life-span needs of families of persons with Down syndrome and the impact of cultural and sociocultural diversity on family outcomes. It will also be important to relate family outcomes to differences in the offspring's behaviors, development, relationships, medical conditions, psychopathology, and the presence (and effectiveness) of needed support services. Although these families have received some research attention over the past several decades, we now need to make family research in Down syndrome more concrete, more life-span, and more tied to characteristics of the individual with the syndrome and the family's surrounding support system.
Ment Retard Dev Disabil Res Rev
· 2007 · PMID 17910080
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Similar to the state of the broader intellectual disabilities field, many gaps exist in the research and treatment of mental health concerns in people with Down syndrome. This review summarizes key findings on the type a...Similar to the state of the broader intellectual disabilities field, many gaps exist in the research and treatment of mental health concerns in people with Down syndrome. This review summarizes key findings on the type and prevalence of behavior and emotional problems in children, adolescents, and adults with Down syndrome. Such findings include relatively low rates of severe problems in children, and well-documented risks of depression and Alzheimer's disease in older adults. The review also considers emerging data on autism, and the paucity of studies on adolescents. Three next steps for research are highlighted, including a need to: (1) connect research on psychiatric status and diagnoses across developmental periods, including adolescence, and to examine such associated processes as sociability, anxiety and attention; (2) unravel complicated biopsycho-social risk and protective factors that serve to increase or diminish psychopathology; and (3) identify evidence-based treatments that both reduce distressful symptoms and enhance well-being in individuals with Down syndrome.