International Review of Research in Developmental Disabilities

1. Auflage 2014
ISBN: 978-0-12-800334-3
Verlag: Elsevier Science & Techn.
Format: EPUB
Kopierschutz: Adobe DRM (»Systemvoraussetzungen)

E-Book, Englisch, Band Volume 47, 268 Seiten

Reihe: International Review of Research in Developmental Disabilities

International Review of Research in Developmental Disabilities is an ongoing scholarly look at research into the causes, effects, classification systems, syndromes, etc. of developmental disabilities. Contributors come from wide-ranging perspectives, including genetics, psychology, education, and other health and behavioral sciences. - Provides the most recent scholarly research in the study of developmental disabilities - A vast range of perspectives is offered, and many topics are covered - An excellent resource for academic researchers

Autoren/Hrsg.

Inhaltsverzeichnis

1;Front Cover;1
2;International Review of Research in Developmental Disabilities;4
3;Copyright;5
4;Contents;6
5;Preface;8
5.1;Reference;11
6;Contributors;12
7;Chapter One: Understanding and Improving Care for Individuals with Intellectual and Developmental Disabilities in the Eme...;14
7.1;1. Introduction;15
7.2;2. Research on Patterns of ED Use Among Individuals with IDD;16
7.2.1;2.1. Summary;18
7.3;3. Predictors of ED Use;19
7.3.1;3.1. Predisposing Variables;19
7.3.1.1;3.1.1. Age;19
7.3.1.2;3.1.2. Gender;20
7.3.1.3;3.1.3. Disability Severity;20
7.3.2;3.2. Enabling Variables;21
7.3.2.1;3.2.1. Income;21
7.3.2.2;3.2.2. Health-Care Access;21
7.3.2.3;3.2.3. Care Planning;22
7.3.2.4;3.2.4. Residential/Family Supports;22
7.3.3;3.3. Need Variables;23
7.3.3.1;3.3.1. Psychiatric or Mental Health Issues;23
7.3.3.2;3.3.2. Medical Issues;23
7.3.3.3;3.3.3. Previous ED Use;23
7.3.3.4;3.3.4. History of Involvement with the Criminal Justice System;24
7.3.3.5;3.3.5. Life Events;24
7.3.3.6;3.3.6. Medication Use;24
7.3.4;3.4. Summary;25
7.4;4. Quality Care in the ED: Barriers and Stakeholder´s Perspectives;26
7.4.1;4.1. Perspectives of Staff;26
7.4.2;4.2. Perspectives of Patients with IDD;27
7.4.3;4.3. Perspectives of Families and Paid Caregivers;28
7.4.4;4.4. Interventions to Improve Emergency Care;29
7.4.5;4.5. Summary;31
7.5;5. Evidence-Informed Approaches for Implementing Practice Change in Health-Care Settings;31
7.5.1;5.1. ED Practice Change Project;33
7.5.1.1;5.1.1. Setting Challenges for Practice Change;34
7.5.1.2;5.1.2. Intended ED Practice Changes;35
7.5.1.2.1;5.1.2.1. Improved Identification;35
7.5.1.2.2;5.1.2.2. Modified Care;37
7.5.1.2.3;5.1.2.3. Enhanced Discharge Process;37
7.5.2;5.2. ED Practice Change Project Evaluation;38
7.5.2.1;5.2.1. Implementation Process;38
7.5.2.2;5.2.2. Implementation Outcomes;38
7.5.2.3;5.2.3. Intervention Outcomes;41
7.5.3;5.3. Summary;42
7.6;6. Conclusion;43
7.7;Acknowledgments;44
7.8;References;44
8;Chapter Two: Use of Promotoras de Salud in Interventions with Latino Families of Children with IDD;52
8.1;1. Introduction;53
8.1.1;1.1. Parenting Children with IDD;53
8.1.2;1.2. Research on Latino Families of Children with IDD;54
8.2;2. Background;56
8.2.1;2.1. Interventions for Parents and Families of Children with IDD;56
8.2.1.1;2.1.1. Interventions Designed to Reduce Problem Behaviors;57
8.2.1.2;2.1.2. Interventions Designed to Improve Language Development;58
8.2.1.3;2.1.3. Parent-to-Parent Programs;59
8.2.2;2.2. Interventions for Latino Parents and Families of Children with IDD;60
8.2.3;2.3. Borrowing a Model from Public Health: Promotoras de Salud;64
8.3;3. Using Promotoras de Salud to Deliver Family Interventions to Latino Families;65
8.3.1;3.1. Description of Our Projects;67
8.3.1.1;3.1.1. Project 1: By Caring for Myself, I Can Better Care for My Family;67
8.3.1.2;3.1.2. Project 2: Parents Taking Action;69
8.3.2;3.2. Lessons Learned About Conducting a Successful Promotora Project Using CBPR Approaches;71
8.3.2.1;3.2.1. The Importance of a Community Project Coordinator;71
8.3.2.2;3.2.2. Building Promotora Capacity;72
8.3.2.3;3.2.3. Promotora Retention;72
8.3.2.4;3.2.4. Shared Vision and Goals;73
8.3.2.5;3.2.5. Funding for CBOs;74
8.4;4. How Do Promotoras Foster Change?;74
8.4.1;4.1. Methods;76
8.4.2;4.2. Results;76
8.4.2.1;4.2.1. Promotoras Personal Growth;77
8.4.2.2;4.2.2. Mechanisms for Change;78
8.4.3;4.3. Discussion;79
8.5;5. Conclusion;80
8.6;Acknowledgments;82
8.7;References;82
9;Chapter Three: Executive Function and Planning in Early Development in Down Syndrome;90
9.1;1. Overview of EF: Current State of Knowledge;92
9.1.1;1.1. EF Subdomains;92
9.1.2;1.2. Dissociability of EF Domains;95
9.2;2. Early Emergence of EF and Planning;97
9.2.1;2.1. Early Foundations of EF;97
9.2.2;2.2. Early Development of EF Subdomain Processes;98
9.2.2.1;2.2.1. Inhibition in Early Development;98
9.2.2.2;2.2.2. Working Memory in Early Childhood;99
9.2.2.3;2.2.3. Shifting in Early Childhood;99
9.2.2.4;2.2.4. Planning in Early Childhood;100
9.3;3. Tracing EF and Planning Performance in Early Childhood in DS: Implications for Intervention in DS;102
9.3.1;3.1. EF Skills in DS: Short Summary;102
9.3.2;3.2. Planning in Early Childhood in DS;103
9.3.2.1;3.2.1. Implications for Early Intervention in DS;105
9.4;4. Conclusion;106
9.5;References;107
10;Chapter Four: Moving Beyond the Status Quo: Using Evidence-Based Practice to Improve Autism Core Deficits in the Preschoo...;112
10.1;1. Timing of Treatment;113
10.2;2. Dose of Treatment;114
10.3;3. Content of Treatment;115
10.4;4. Current Review;117
10.5;5. Building the Case for Enacting ASD Core Deficit Change in Preschool;118
10.5.1;5.1. The Importance of ASD Core Deficit Intervention in the School Setting;118
10.5.1.1;5.1.1. Reaching Large Numbers of Children with ASD;119
10.5.1.2;5.1.2. Educational Mandates to Serve Young Children with ASD;119
10.5.1.3;5.1.3. Programming Meaningful Interventions;120
10.5.1.4;5.1.4. Schools Providing a Sufficient Dose;123
10.5.2;5.2. Rarity of School-Based Social Communication Interventions;124
10.5.2.1;5.2.1. Teacher Report;124
10.5.2.2;5.2.2. Researcher Report;125
10.5.2.3;5.2.3. Conclusion;127
10.5.3;5.3. The Rarity of Recent School-Based Core Deficit Intervention;127
10.5.3.1;5.3.1. Results;129
10.5.3.2;5.3.2. Conclusion;134
10.6;6. ASD Core Deficit Malleability in the School Setting;135
10.6.1;6.1. Pullout Intervention at School;135
10.6.2;6.2. Clinicians in the Preschool Classroom;138
10.6.3;6.3. Classroom Practitioners Embedding Intervention;140
10.6.4;6.4. Conclusion;143
10.7;7. Increasing the Momentum for School-Based ASD Core Deficit Research and Practice;144
10.7.1;7.1. Enhancing the Feasibility of School-Based Social Communication Interventions;144
10.7.1.1;7.1.1. Active Ingredients;145
10.7.1.2;7.1.2. Treatment Manuals Tailored to the School Classroom;146
10.7.1.3;7.1.3. Accurately Assessing Change;147
10.7.2;7.2. Sustaining Favorable Changes in Child Social Communication;147
10.7.2.1;7.2.1. Implementation by Real-World Providers;147
10.7.2.2;7.2.2. Community-Partnered Participatory Research;151
10.7.2.3;7.2.3. Treatment Acceptability;152
10.7.2.4;7.2.4. Refresher Courses;154
10.7.3;7.3. Disseminating Evidence-Based ASD Practice;154
10.8;8. Conclusion;155
10.9;Acknowledgments;156
10.10;References;156
11;Chapter Five: Rules of ``Engagement´´: Addressing Participation and Functional Performance in Children with Intellectual ...;164
11.1;1. Introduction;165
11.2;2. Indicators of Child Functioning;166
11.2.1;2.1. What is Participation and Functional Performance?;167
11.2.1.1;2.1.1. Participation Operationalized;168
11.2.1.2;2.1.2. Why is Participation Important to Understand and Measure?;168
11.2.1.3;2.1.3. Functional Performance Operationalized;169
11.2.1.4;2.1.4. Why is Functional Performance Important to Understand and Measure?;169
11.2.2;2.2. Indicators of Child Functioning Summary;170
11.3;3. Review of Participation and Functional Performance Measures for Children with IDDs;170
11.3.1;3.1. How Do We Measure Children´s Participation?;171
11.3.1.1;3.1.1. The Participation and Environment Measure for Children and Youth;171
11.3.1.2;3.1.2. Applications of the PEM-CY;172
11.3.1.3;3.1.3. Children´s Assessment of Participation and Enjoyment;173
11.3.1.4;3.1.4. Application of the CAPE;174
11.3.1.5;3.1.5. The Assistance to Participate Scale and the Child and Adolescent Scale of Participation and Applications;176
11.3.1.6;3.1.6. The Child and Adolescent Scale of Participation;177
11.3.1.7;3.1.7. Summary of Participation Measures;177
11.3.2;3.2. How Do We Measure Children´s Functional Performance?;178
11.3.2.1;3.2.1. Pediatric Evaluation of Disability Inventory;178
11.3.2.2;3.2.2. Application of the PEDI;179
11.3.2.3;3.2.3. Development and Application of the PEDI-CAT;181
11.3.2.4;3.2.4. Functional Independence Measure for Children (WeeFIM; Msall et al., 1994);183
11.3.2.5;3.2.5. Summary of Functional Performance Measures;184
11.3.3;3.3. Assessment That Combines Children´s Participation and Functional Performance;184
11.3.3.1;3.3.1. The School Function Assessment;184
11.3.3.2;3.3.2. Application of the SFA;185
11.3.3.3;3.3.3. Summary of the SFA Applications;187
11.4;4. Discussion;188
11.4.1;4.1. Parsing Participation;188
11.4.2;4.2. Proxy Reporting;189
11.4.3;4.3. Sampling Considerations;189
11.5;References;191
12;Chapter Six: The Psychology of Decision Making;198
12.1;1. Theoretical Perspectives on Decision Making;199
12.1.1;1.1. Normative and Descriptive Theories;199
12.1.1.1;1.1.1. Heuristics and Biases;201
12.1.1.2;1.1.2. Stage-Based Models;202
12.1.2;1.2. Dual-Process Theories;203
12.1.3;1.3. Role of Noncognitive Processes in Decision Making;205
12.1.3.1;1.3.1. Motivation;205
12.1.3.2;1.3.2. Emotion;207
12.1.4;1.4. Developmental Perspectives on Decision Making;209
12.1.5;1.5. Summary of Theoretical Perspectives on Decision Making;211
12.2;2. Decision Making and IDD;212
12.2.1;2.1. Research on Decision Making with Individuals with ID;213
12.2.2;2.2. Research on Decision Making with Individuals with WS-A Singular Disorder Associated with ID;219
12.2.3;2.3. Research on Decision Making with Individuals with ASD;221
12.2.4;2.4. Summary of Decision-Making Research with Individuals with IDD;224
12.3;3. A Pathways Model of Decision Processing;225
12.4;Pathway 1;229
12.5;Pathway 2;230
12.6;Pathway 3;230
12.7;Pathway 4;230
12.8;4. Conclusion;231
12.9;References;235
13;Index;244
14;Contents of Previous Volumes;252

Leseproben

Chapter Two Use of Promotoras de Salud in Interventions with Latino Families of Children with IDD
Sandra Magaña*,1; Kristina Lopez†; Rebecca Paradiso de Sayu‡; Elizabeth Miranda‡ email address: [e-mail]    * Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois, USA
† School of Social Work, California State University, Long Beach, California, USA
‡ University of Wisconsin-Madison, Madison, Wisconsin, USA
1 Corresponding author: Abstract
Families of children with intellectual and developmental disabilities (IDDs) experience unique rewards and challenges caring for their child. Many family interventions have been developed over the years to provide supports to these families and their children. However, few interventions have included racial and ethnic minority families and few researchers have developed and tested culturally competent interventions specifically for these populations. Because Latinos represent the largest racial/ethnic population, they also represent a large proportion of children with IDD and their families. We provide background on parent and family interventions, and those developed for use with Latino families. We then describe the use of the promotora de salud model as a culturally competent intervention mode for Latino families of children with IDD. We describe two parent training programs that used this mode, the results of their evaluation studies, and discuss lessons learned in the context using of a community-based research approach. Lastly, we explore the question of why promotoras were successful in promoting change among mothers of children with IDD by analyzing focus-group data across projects. Our findings suggest that role modeling and the collaborative style promotoras used in providing education promoted change among participants. In conclusion, more interventions are needed to serve Latino children with IDD and their families. The promotora de salud model holds promise as a mode of intervention delivery for these families. Keywords Latinos Intellectual and developmental disabilities Families Interventions 1 Introduction
1.1 Parenting Children with IDD
Approximately, 19.8% of children in the United States between the ages of 0 and 17 have a special health care need according to the 2011/2012 National Survey of Children's Health (Child & Adolescent Health Measurement Initiative, 2013). These data show that about 31% of those with special health care needs have a developmental delay or disability including intellectual disability (ID), autism spectrum disorders (ASDs), cerebral palsy, or epilepsy. Caring for a child with intellectual and developmental disabilities (IDDs) can be rewarding but can also be stressful as it presents parenting challenges that families may not have been prepared for. Disability studies scholars and self-advocates argue that these challenges are not necessarily caused by the child and his or her disability, but by the lack of recognition by society that providing supports to individuals who need them should be a normal part of daily community life (Berger, 2013; Dybwad & Bersani, 1996). Because having a child with a disability is socially constructed as a nonnormative experience, the child and their families may face stigma and isolation. In addition, it often becomes a lifetime odyssey for parents to learn about their child's disability and how to best accommodate him or her, and how and where to access services and supports that may help their child function as full members of society. In this context, mothers caring for a child with IDD confront a variety of stressors associated with the caregiver role. These challenges include experiencing difficulties in obtaining a timely diagnosis, altering aspirations for the child's future, dedicating considerable time to the child's treatment and therapeutic programming, and contending with the daily physical and emotional strain of caregiving (Bailey, Skinner, Rodriguez, Gut, & Correa, 1999; Paster, Brandwein, & Walsh, 2009). Research has shown that one of the factors that most contributes to stress among caregivers of children with IDD is problem child behaviors (Lee, 2013). Children with developmental disabilities are reported to be at an increased risk for developing a number of psychological problems including disruptive behaviors (Sofronoff, Jahnel, & Sanders, 2011). Problem behaviors can develop among children with IDD for a number of reasons, and probably the most frequent one is difficulties with communication (McClintock, Hall, & Oliver, 2003). Many young children with IDD have a delay in language development and those with expressive and receptive language abilities may have challenges with social communication (Brady, Marquis, Fleming, & McLean, 2004; McCabe & Meller, 2004). This can lead to frustration and challenging behaviors among these children which can be disruptive to family life. Parents may experience these behaviors as even more stressful because of societal expectations for how children should behave and the assumption that parents alone are responsible for their child's behaviors (Ray, 2002). Challenging behaviors have been found to negatively impact parent–child interactions (McDiarmid & Bagner, 2005), maternal physical health (Eisenhower, Baker, & Blacher, 2009), depression, anxiety (Gray et al., 2011), stress (Estes et al., 2009), sleeping patterns (Lee, 2013), and marital adjustment (Baker, Blacher, & Olsson, 2005) among families raising children with IDD. Many of these families also report significant financial problems (Brandon, 2007; Emerson, 2003) largely impacted by out of pocket costs of services for their children (Browne et al., 2012), which can add to stress experienced by parents. To address the complexity of needs that children with IDD and their families have, interventions that involve parents and children with IDD are needed to provide support that enables parents and children to be part of community life (Jones & Passey, 2004; Rhodes, 2003). Although a number of family inclusive interventions have been developed, very few of them have included racial and ethnic minority families in their development, evaluation, or implementation. For instance, there are very few interventions that have included or have been especially developed for Latino families who represent the largest and fastest growing racial/ethnic group in the United States. 1.2 Research on Latino Families of Children with IDD
Between the 2000 and 2010 census, the Latino population grew by 43% and encompassed more than half of the total population growth in the United States (U.S. Census, 2010). More than 50 million Latinos reside in the United States, with the Mexican origin population comprising 31.8 million, followed by Puerto Ricans (4.6 million), Cubans (1.8 million), and those of all other Hispanic origin (12.3 million). Latino children comprise 23.1% of children 17 years of age and younger. Although the percent of Latinos in the United States has risen dramatically, recent research indicates that the number of Latino children with developmental disability and autism may be underestimated (Chaidez, Hansen, & Hertz-Picciotto, 2012). According to Chaidez et al. the underestimation is a result of limited access to health care, test bias, and differential caregiver expectations for children's behavior. Latino children who are diagnosed with an IDD continue to have lower access, utilization, and quality of health care compared to white children (Cohen, 2013; Liptak et al., 2008; Parish, Magaña, Rose, Timberlake, & Swaine, 2012). Latino families involved in early intervention (birth to three) programs have limited access to care and lower levels of satisfaction with services (Bailey et al., 1999). Service barriers for Latino children and families involved with early intervention systems of care include finances, linguistic and communication difficulties, and cultural incongruence between families and providers (Denney, Itkonen, & Okamoto, 2007). Multiple studies have found Latino families are in need of more information about their child's health and access to services (Cohen, 2013; Iland, Weiner, & Murawski, 2012; Magaña, Lopez, Aguinaga, & Morton, 2013; Rivers & Patino, 2006). These findings indicate a need to improve outreach and service delivery to Latino families of children with intellectual or developmental disabilities. Caregiver stressors discussed earlier may be compounded for Latina mothers who are more likely to be immigrants, and often confront socioeconomic and language barriers compared to non-Latina White (NLW) mothers, which can contribute to more health problems and fewer available health resources (Magaña, Seltzer, & Krauss, 2004). Latina mothers of children with IDD have been found to have greater levels of depressive symptoms and more physical health problems compared to Latina mothers of children without IDD and NLW mothers of children with IDD (Blacher & McIntyre, 2006; Blacher, Lopez, Shapiro, & Fusco, 1997;...