International Review of Research in Mental Retardation

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08 09 10 10 9 8 7 6 5 4 3 2 1
CONTENTS

Contributors ix
Foreword xiii
Preface xv

Section I. Longitudinal Comparisons 1

1. Mothers and Fathers Together: Contrasts in Parenting
Across Preschool to Early School Age in Children
with Developmental Delays 3
Keith Crnic, Anita Pedersen y Arbona,
Bruce Baker, and Jan Blacher
1. The Father in the Family 8
2. Setting the Stage: Stress, Well-Being, and Parenting 9
3. The Collaborative Family Study: A Context for Contrasts 10
4. Parental Stress and Children with ID 11
5. Parental Psychological Well-Being in
the Context of ID 17
6. Parenting Behavior with Children with ID 19
7. An Integrated Perspective 22
8. Summary and Conclusions 25
References 26

2. The Transition to Adulthood for Individuals with

Intellectual Disability 31
Frank J. Floyd, Catherine L. Costigan, and Vivian E. Piazza
1. Introduction 32
2. Method 37
3. Results 42
4. Discussion 54
5. Conclusion 58
References 58

v
vi Contents

3. By Choice or By Chance: Longitudinal Perspectives on

Resilience and Vulnerability in Adoptive and Birth Parents
of Children with Developmental Disabilities 61
Laraine Masters Glidden and Brian M. Jobe

1. Introduction 62
2. Hypothesis Testing: Chronic Sorrow or
Crisis and Recovery 71
3. Parental Long-Term Adjustment: Multiple Variables
Measured Multiple Times 73
4. Parental Long-Term Adjustment: Transition
to Adulthood 78
5. Chronic Sorrow or Crisis and Recovery: Conclusions
from Mean-Level Differences 79
6. Parental Long-Term Adjustment: The Importance of
Personality in Predicting Resilience 81
7. Summary, Conclusions, and Directions for Future Research
in the Study of Resilience 87
References 90

Section II. Methodological and Sample Diversity 95

4. Socioeconomic Position, Poverty, and Family Research 97
Eric Emerson and Chris Hatton

1. Introduction 98
2. Socioeconomic Position and Poverty 98
3. Socioeconomic Position, Poverty, and the Prevalence of
Intellectual and Developmental Disability 100
4. The Impact of Socioeconomic Position on Family Functioning
and Child Well-Being 104
5. The Impact of Socioeconomic Position Among
Families Supporting a Child with Intellectual or
Developmental Disabilities 106
6. Moving Forward: Methodological and Conceptual
Issues Associated with Incorporating Socioeconomic
Position into Family Research 112
7. Conclusions 119
References 120
Contents vii

5. Using Large-Scale Databases to Examine Families of Children

with Intellectual and Developmental Disabilities 131
Robert M. Hodapp and Richard C. Urbano
1. Studying Families of Persons with Specific Disabilities 133
2. Three Large-Scale Approaches to Family Research 135
3. Two Examples of Using Large-Scale Administrative
Databases to Answer Family-Related Questions 165
4. Comparing Different Types of Large-Scale Databases 169
5. Summary and Conclusion 172
References 173

6. A Rich Mosaic: Emerging Research on Asian Families

of Persons with Intellectual and Developmental Disabilities 179
Subharati Ghosh and Sandy Magaña

1. Introduction 180
2. Cross-Cultural Model of Family Functioning 181
3. Review of the Literature Within the Cross-Cultural Model 182
4. Summary and Conclusions 206
References 209

7. Biomarkers in the Study of Families of Children

with Developmental Disabilities 213
Marsha Mailick Seltzer, Leonard Abbeduto, Jan S. Greenberg,
David Almeida, Jinkuk Hong, and Whitney Witt

1. Introduction 214
2. Fragile X Syndrome and Related Conditions 216
3. Cortisol Profiles in Parents of Children with Disabilities 229
4. Summary and Conclusions: Next Steps in Research
on Biomarkers in Families of Individuals with
Developmental Disabilities 239
References 242

8. Siblings of Children with Intellectual Disabilities:

Normal, Average, or Not Too Different? 251
Zo Stoneman
1. Siblings of Typically Developing Children 253
2. Research on Siblings of Children with Intellectual Disabilities 255
3. Use of Comparison Groups in Sibling Disability Research 258
viii Contents

4. Methodological Considerations in Conducting

Comparison Group Sibling Research 277
5. Same or Not Too Different from Average? 280
6. The Case (or the Lack Thereof ) for Sibling Interventions 283
7. Concluding Thoughts 284
References 286

Section III. Interventions 297

9. Family Support Interventions for Families of Adults
with Intellectual and Developmental Disabilities 299
Tamar Heller and Abigail Schindler
1. Introduction 300
2. Impact of Having a Family Member with I/DD 301
3. Family Support Public Policies and Programs 311
4. Family Support Psychosocial Interventions 317
5. Conclusion 324
References 325

10. Interventions Aimed at Improving Child Language

by Improving Maternal Responsivity 333
Nancy Brady, Steven F. Warren, and Audra Sterling
1. Responsivity is a Multilevel Construct 335
2. Responsivity Relates to Child Outcomes 339
3. Interventions Aimed at Improving Responsivity 344
4. Summary and Conclusions 351
References 353

Index 359
Contents of Previous Volumes 367
CONTRIBUTORS

Numbers in parentheses indicate the pages on which the authors’ contributions begin.
Leonard Abbeduto (213)
Department of Educational Psychology, and Waisman Center, University of
Wisconsin-Madison, Madison, Wisconsin 53705, USA
David Almeida (213)
Department of Human Development and Family Studies, The Pennsylvania State
University, University Park, Pennsylvania, USA
Anita Pedersen y Arbona ( 3)
Department of Psychology, Arizona State University, Tempe, Arizona 85287,
USA
Bruce Baker ( 3)
Department of Psychology, UCLA, Los Angeles, California 90095, USA
Jan Blacher ( 3)
Graduate School of Education, University of California, Riverside, California
92521, USA
Nancy Brady ( 333)
Schiefelbusch Institute for Life Span Studies, University of Kansas, Lawrence,
Kansas 66045, USA
Catherine L. Costigan ( 31)
Department of Psychology, University of Victoria, STN CSC, Victoria, British
Columbia V8W 3P5, Canada
Keith Crnic ( 3)
Department of Psychology, Arizona State University, Tempe, Arizona 85287,
USA
Eric Emerson (97)
Institute for Health Research, Lancaster University, Lancaster LA1 4YT,
United Kingdom
Frank J. Floyd ( 31)
Department of Psychology, Georgia State University, Atlanta, Georgia 30302-
5010, USA
Subharati Ghosh (179)
University of Wisconsin-Madison, School of Social Work, Madison, Wisconsin
53705, USA
ix
x Contributors

Laraine Masters Glidden (61)

Department of Psychology, St. Mary’s College of Maryland, St. Mary’s City,
Maryland 20686, USA
Jan S. Greenberg (213)
Waisman Center, and School of Social Work, University of Wisconsin-Madison,
Madison, Wisconsin 53705, USA
Chris Hatton (97)
Institute for Health Research, Lancaster University, Lancaster LA1 4YT,
United Kingdom
Tamar Heller (299)
Department of Disability and Human Development, College of Applied Health
Sciences, University of Illinois at Chicago, Chicago, Illinois 60608-6904, USA
Robert M. Hodapp (131)
Department of Special Education, Peabody College and Vanderbilt Kennedy
Center for Research on Human Development, Vanderbilt University, Nashville,
Tennessee 37203, USA
Jinkuk Hong (213)
Waisman Center, University of Wisconsin-Madison, Madison, Wisconsin 53705,
USA
Brian M. Jobe (61)
Department of Psychology, University of Maryland, Baltimore County,
Catonsville, Maryland 21228, USA
Sandy Magaña (179)
University of Wisconsin-Madison, School of Social Work, Madison, Wisconsin
53705, USA
Vivian E. Piazza ( 31)
Department of Psychology, Georgia State University, Atlanta, Georgia 30302-
5010, USA
Abigail Schindler (299)
Department of Disability and Human Development, College of Applied Health
Sciences, University of Illinois at Chicago, Chicago, Illinois 60608-6904, USA
Marsha Mailick Seltzer (213)
Waisman Center, and School of Social Work, University of Wisconsin-Madison,
Madison, Wisconsin 53705, USA
Audra Sterling ( 333)
Director, Schiefelbusch Institute for Life Span Studies, University of Kansas,
Lawrence, Kansas 66045, USA
Contributors xi

Zo Stoneman (251)
Institute on Human Developement and Disability, College of Family and
Consumer Sciences, University of Georgia, Athens, GA 30602
Richard C. Urbano (131)
Vanderbilt Kennedy Center for Research on Human Development, Vanderbilt
University, and Department of Pediatrics, Vanderbilt University Medical Center,
Nashville, Tennessee 37203, USA
Steven F. Warren ( 333)
Director, Schiefelbusch Institute for Life Span Studies, University of Kansas,
Lawrence, Kansas 66045, USA
Whitney Witt (213)
Department of Population Health Sciences, and Waisman Center, University of
Wisconsin-Madison, Madison, Wisconsin 53705, USA
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FOREWORD

The International Review of Research in Mental Retardation has been published

for more than 40 years. During this time, the field of mental retardation has
changed dramatically in both its science and its services. Although psychol-
ogy, education, medicine, sociology, law, and other disciplines have always
been constituent players, more than ever now, these contributions are
coordinated and collaborative with expertise from different disciplines
contributing essential methods and knowledge to solve problems.
My own career has spanned approximately the same time period as that
of this International Review series, and I am proud to have played a role in its
continued production and success. I first published in Volume 13 in 1985,
and then over the years, with coauthors, wrote three more chapters,
including the one in this volume. I do not intend it to be my last.
This volume, however, is my last one as Series Editor. I was both honored
and eager to take on the Editor role in 1997 and assume responsibility for the
subsequent 16 volumes that were produced during my Editorship. Without
the good fortune of working with knowledgeable and committed colleagues
who served on the Board of Associate Editors, and who guest-edited theme
volumes, there would have been fewer volumes of lesser quality. I, and the
field, owe a special debt of gratitude to these individuals whom I recognize
here (alphabetical order): Len Abbeduto, Phil Davidson, Elisabeth Dykens,
Mike Guralnick, Richard Hastings, Linda Hickson, Bob Hodapp, Connie
Kasari, Johnny Matson, Bill McIlvane, Glynis Murphy, Ted Nettelbeck,
Marsha Seltzer, Harvey Switzky, Rick Urbano, Jan Wallander.
Three individuals in this list deserve special recognition. Harvey
Switzky took on the task of editing a theme volume with such zeal and
determination that he solicited manuscripts from more experts in the field of
personality and motivation than could be accommodated in a single
volume. He had no hesitation in agreeing to be the guest editor of two
volumes, 28 and 31. Second, it has been a delight to work with Marsha
Seltzer as coeditor on the current volume. As always, she was not only
conscientious with regard to the tasks that confronted us, but also creative
about how to organize the volume and invite colleagues who would make
valuable contributions. Finally, Bob Hodapp is the new Series Editor.
I know that he cares as much about the International Review as I have done
and still do, and that he has the intellectual vigor and professional resources
to make it even better than it is. We will all look forward to Volume 38,
the first of what I hope will be many volumes that he will edit.

xiii
xiv Foreword

Finally, various members of the editorial department at Academic Press

have been supportive of our efforts, and I would particularly like to thank
Barbara Makinster, Niki Levy, and Mica Haley whose essential roles in
bringing volumes from ideas to books were critical. None of it could have
been done without them.

LARAINE MASTERS GLIDDEN

PREFACE

Research on families of children and adults with intellectual and

developmental disabilities (IDD) has attracted substantial attention, espe-
cially following the movement away from out-of-home residence that
typified the deinstitutionalization and normalization trends that began in
the 1960s and continue in the present. Although most children with IDD
have always lived with their families, when substantial numbers of them
began to live in institutions, those individuals and the issues surrounding
their residential status tended to dominate research. In 1966, when volume
1 of the International Review was published, more than twice as many articles
were published on mental retardation and institutions (66) than on mental
retardation and families (31). In 2008, the numbers told quite a different
story. A PsychInfo search found 178 articles on mental retardation and
families and only 54 on mental retardation and institutions. Surprisingly,
although the International Review has published many chapters on families,
no single volume has been dedicated to this topic. The current volume
redresses that issue.
We have organized this volume into three sections that reflect three
important dimensions of research in IDD: longitudinal research; methodo-
logical and sample diversity; and interventions. In this preface, we briefly
summarize the important themes of each of the chapters and the way these
themes relate to the sections and to other chapters.
Longitudinal Research. Three chapters constitute the section on longitu-
dinal research. In the first chapter, Crnic, Pedersen y Arbona, Baker, and
Blacher focus on the preschool to early school age period, based on data
from their longitudinal Family Collaborative Project. Their research is
longitudinal in that it not only follows the sample over time, but also
compares mothers and fathers, and children with and without developmen-
tal delay. The authors are particularly concerned about giving more visibil-
ity to fathers and comparing the developmental trajectories of mothers
and fathers to explain how they similarly or differently influence the
development of their children.
Continuing along the developmental trajectory, Floyd and Costigan
focus on the transition to adulthood in individuals with IDD based on
data from a longitudinal investigation of individuals who were first studied
during their elementary school years and who are now in their early 20s, on
average. The findings indicate limited evidence of complete independence

xv
xvi Preface

from parents, and the authors conceptualize the stage of emerging adulthood
characterized by interdependence rather than independence.
The third chapter in this section, by Glidden and Jobe, is yet another
example of longitudinal family research. Here the focus is on the long-term
adjustment of parents who adopt children with IDD, as well as the more
typical birth families. Profiles of resiliency are prominent among the find-
ings, dispelling the myth of chronic sorrow and suggesting that parents adapt
to the challenge. In addition, these authors point to the importance of
bringing parental personality characteristics into models of resilience and
vulnerability.
Methodological and Sample Diversity. The section on methodological and
sample diversity demonstrates that samples in family studies come from
many different national, racial and ethnic groups; from different family
members; and from methods that vary from physiological to secondary
analyses of large datasets. This level of methodological rigor has now set
the standard for family research on IDD.
In Chapter 4, the first of five chapters in this section, Emerson and
Hatton amass large amounts of data from many countries to remind us that
IDD is embedded in a family context, which is itself part of an exosystem
and macrosystem with life-altering consequences. Persons with IDD are far
more likely to experience poverty, and poverty and its concomitants are
likely to be contributing factors to the development of the disability.
The authors of Chapters 5 and 6 focus on different types of methodo-
logical diversity—from demographic to physiological approaches. In
Chapter 5, Hodapp and Urbano argue effectively that large-scale databases
are a valuable resource for answering important questions about families of
children with IDD. They review different types of databases relevant to the
families and provide illustrative examples from their own work. In contrast,
Seltzer, Abbeduto, Greenberg, Almeida, Hong and Witt move us in a
different direction in Chapter 6 with an emphasis on biomarkers as indica-
tors of adverse reactions in maternal caretakers. They review their work
along with that of other investigators on the FMR1 gene and on cortisol,
and reiterate that these methodologies have much to tell us about families
and IDD.
In Chapters 7 and 8, the diversity is of samples rather than of method.
Stoneman focuses on research on the siblings of children with IDD, with an
extensive review of published studies and an emphasis on the methodologi-
cal complexity and obstacles in conducting this kind of research. She
discusses approaches for constituting comparison groups and thus, provides
the reader with a very useful set of strategies for either conducting or
evaluating sibling research.
In the Ghosh and Magaña chapter, the focus shifts from diversity in
samples studied in family research to ethnic and racial diversity. They
review the emerging body of research on Asian families who have a son
Preface xvii

or daughter with IDD. By including studies of families of Asian-descent

who live in the US and the UK, as well as Asian families who live in Asian
countries, considerations of cultural values, acculturation, and cross-cultural
stress are examined within a cross-cultural stress and coping model.
Interventions. Families of children with IDD are often involved in inter-
ventions aimed at improving the functioning and abilities of their children.
We conclude this volume with two chapters on family interventions. The
first, by Brady, Warren, and Sterling, examines interventions aimed at
improving child language via improving maternal responsivity. Here the
focus is on young children with IDD. Through an extensive review of past
research, this chapter demonstrates that such interventions can have a major
impact on maternal responsivity, and to a lesser extent, on child language
outcomes. The second chapter on family interventions, by Heller and
Schindler, is focused on interventions involving families of adults with
IDD. Rather than using the family as an agent fostering behavioral change,
this chapter reviews family support interventions, as well as public policies
and services aimed at supporting families as long-term caregivers for their
adult children with IDD. Together, these two chapters illustrate how the
expectations of families change over the course of life.
Finally, we would have been unable to produce this volume without the
help of many expert reviewers whose efforts often go unacknowledged
because of the anonymity of the review process. We thank the following
individuals (alphabetical listing) who lent their expertise despite the many
demands on their time. This volume is greatly improved because of them:
Don Bailey, Debbie Carran, Derek Chapman, Monica Cuskelly, Elisabeth
Dykens, Anna Esbensen, Frank Floyd, Glen Fujiura, Jan Greenberg, Chris
Hatton, Penny Hauser-Cram, Jinkuk Hong, Julie Lounds Taylor, Malin
Olsson, Gael Orsmond, Susan Parish, Leann Smith, Patricia Walsh, and
Susan Ellis Weismer.

LARAINE MASTERS GLIDDEN

MARSHA MAILICK SELTZER
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S E C T I O N O N E

LONGITUDINAL COMPARISONS