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Siblings of People with Disabilities : a Developmental Analysis of the Effects, Impacts, and Patterns of Adaptation

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Siblings of People with Disabilities : a Developmental Analysis of the Effects, Impacts, and Patterns of Adaptation University of Massachusetts Amherst ScholarWorks@UMass Amherst Doctoral Dissertations 1896 - February 2014 1-1-2001 Siblings of people with disabilities : a developmental analysis of the effects, impacts, and patterns of adaptation. Cinnamon C. Azeez University of Massachusetts Amherst Follow this and additional works at: https://scholarworks.umass.edu/dissertations_1 Recommended Citation Azeez, Cinnamon C., "Siblings of people with disabilities : a developmental analysis of the effects, impacts, and patterns of adaptation." (2001). Doctoral Dissertations 1896 - February 2014. 5411. https://scholarworks.umass.edu/dissertations_1/5411 This Open Access Dissertation is brought to you for free and open access by ScholarWorks@UMass Amherst. It has been accepted for inclusion in Doctoral Dissertations 1896 - February 2014 by an authorized administrator of ScholarWorks@UMass Amherst. For more information, please contact [email protected]. SIBLINGS OF PEOPLE WITH DISABILITIES: A DEVELOPMENTAL ANALYSIS OF THE EFFECTS, IMPACTS, AND PATTERNS OF ADAPTATION A Dissertation Presented by CINNAMON C. AZEEZ Submitted to the Graduate School of the University of Massachusetts Amherst in partial fulfillment of the requirements for the degree of DOCTOR OF EDUCATION September 2001 Child and Family Studies © Copyright by Cinnamon C. Azeez 2001 All Rights Reserved SIBLINGS OF PEOPLE WITH DISABILITIES: A DEVELOPMENTAL ANALYSIS OF THE EFFECTS, IMPACTS, AND PATTERNS OF ADAPTATION A Dissertation Presented by CINNAMON C. AZEEZ Approved as to style and content by: Alfred Karlson, Member C Christine King, Member ,W. Jackson, Dean DEDICATION To my son Gage ACKNOWLEDGMENTS I would like to thank my son for his love and understanding. Thanks for being such a great kid! I love you more than anything. To my husband Bobby, I do not even know where to begin. Thanks for keeping me sane. You helped me so much and I will be forever grateful to you for your time, understanding, and patience. Thanks for your unconditional love. You truly are not only the love of my life but also my best friend. To my other best friend Shannon Marie Karcz, thank you for your friendship. You are a true friend. Thanks for all the times you listened to me cry and complain. Thank you for all the countless times you called to check in on me, or to ask about the project or how the dissertation was coming along. It is a good thing you work for the phone company. I love you much. I would like to especially thank the participants in my study. I am thankful for your openness and generosity of your time. Without you all this project would not be complete. I am also thankful to your siblings. I would like to express my gratitude to my committee members. They have helped me grow and develop professionally, and I am forever grateful. To my advisor, Dr. Alfred Karlson, thank you for helping me choose this topic and serving on my comprehensive examination committee and dissertation committee. Thank you for your time. It is highly appreciated. To my chairperson, and head of the Child and Family Studies Department, Dr. Grace Craig, without you I could have never have completed this dissertation. You assisted me and rendered guidance to me throughout this project. Your patience, guidance, understanding, support, knowledge, constructive criticism, and encouragement will never be forgotten. I appreciate all the time you spent on this project, as well as the time you have given me throughout my years at UMASS. In conclusion, I want to express my appreciation to those whose support and friendship helped me to complete this project. Most of all I would like to thank God for rendering this opportunity upon me. VI ABSTRACT SIBLINGS OF PEOPLE WITH DISABILITIES: A DEVELOPMENTAL ANALYSIS OF THE EFFECTS, IMPACTS, AND PATTERNS OF ADAPTATION SEPTEMBER 2001 CINNAMON C. AZEEZ, B.A., STATE UNIVERSITY COLLEGE AT BUFFALO M.A., AMERICAN INTERNATIONAL COLLEGE C.A.G.S., AMERICAN INTERNATIONAL COLLEGE ED.D.,UNIVERSITY OF MASSACHUSETTS AMHERST Directed by: Dr. Grace Craig Throughout their lives, siblings who have a brother or sister with a disability will face many challenges. Much of the research in this area has been quantitative and has resulted in contradictory conclusions. The purpose of this study was to investigate how siblings are affected by an exceptional brother or sister throughout life, how they adapt at different stages through the life span, and how adult siblings re-conceptualize their sibling relationships (retrospection reflection). Specifically, this study explored the developmental considerations when examining relationships with, effects of, and reactions to a sibling with a disability, and to compare and contrast the issues and themes across the life span. Open ended interviews were held with 12 key informants. The key segments of the interviews were transcribed and then analyzed for reoccurring themes at each stage, and changes across the stages. Insights into the sibling experience at different stages of development were offered and helped make sense of much of the previous quantitative research. What was discovered is that of course developmental periods do influence how siblings are affected, impacted, how they relate to their siblings, and how VII they cope. This research demonstrated that there are many common themes, sub themes, and facets and although the themes remain quite static across the 3 developmental periods, the underlying characteristics of the themes definitely change as siblings develop. However, this developmental investigation is so complex that there are no easy conclusions and findings differ somewhat in each individual sibling. CONTENTS Page ACKNOWLEDGMENTS.. ABSTRACT.vii LIST OF TABLES. xiv LIST OF FIGURES.xv CHAPTER 1. INTRODUCTION.1 Overview.1 Rationale.2 Purpose of the Study.4 Research Questions.5 Design Statement...5 Significance of the Study.7 Limitations.8 2. LITERATURE REVIEW.9 % Introduction.9 Negative Effects.11 Neutral and Mixed Effects.17 Positive Effects.20 Mediating Factors and Constellation Variables: An Overview.25 Gender, Age, and Birth Order.26 Psycho-Social Family Factors.29 Parenting/Family.32 Parenting Suggestions.35 Religion & Culture Overview.36 Religion.36 Culture.37 IX Developmental Considerations... 40 Childhood...... 40 Overview. ...40 Sibling Interactions & Relationships...41 Negative & Positive Impacts. .42 Self Concept. 43 Adolescence. 43 Overview. 43 Feelings and Perceptions.44 Development and Other Adolescent Issues... ....46 Family Duties. 46 Concerns of the Adolescent. 47 Stress / Anxiety / Psychological Issues.48 Adulthood. 48 Overview. 48 Career Choices... 49 Future Care Responsibilities. 49 Sibling Needs and the Effects on the Sibling’s Life.51 Sibling Relationships.52 Genetic Concerns.53 Effects on Siblings in Relation to the Severity of the Disability...54 Pervasive Developmental Disorders...55 Mental Retardation, Down’s Syndrome, and Cerebral Palsy.......57 Learning Disability and Attention Deficit Hyperactivity Disorder....59 Mental Disabilities.......62 Physical Disability / Chronic Illness...63 Summary..............68 III. METHODS SECTION.......71 Introduction to Qualitative Inquiry ...71 Research Design.... ...72 Subjects..... ..73 Instruments.... ...81 Procedure..... ..82 Data Collection.82 Data Analysis.83 Limitations.87 4. RESPONDENTS’ REFLECTIONS & DISCUSSION: THE PERCEIVED SIBLING EXPERIENCE......90 Overview...90 The Sibling Relationship.91 Reciprocal and Complementary Behaviors in an Asymmetrical Sibling Relationship.91 Opportunities for Pride, Love, and Acceptance.95 Guilt in its Many Aspects...98 Distance.98 Survivor’s Guilt.101 Embarrassment.102 Sorrow & Sympathy.104 Significant Sibling Influences.106 Acquired Positive Characteristics.106 Career Choices (Helping Professions). 108 Unequal Family Treatment & Sibling Reactions.110 Double Standards.110 Time & Attention.113 Family and Social Isolation.113 Reactions & Feelings.115 Additional Responsibility.118 Caring for Siblings.121 Feeling the Need to Protect the Sibling.121 Care taking.122 More Chores...124 xi 5. RESULTS & DISCUSSION: SIBLING FEARS, CONCERNS, NEEDS & PATTERNS OF ADAPTATION. 126 Introduction. 126 Fears & Worries...........126 Sibling’s Well Being...... 129 Sibling’s Vulnerability to Others. ..130 Friends Attitudes..... 131 Anxiety Regarding Future Concerns. 134 Genetic Testing & Counseling. 136 Future Arrangements .136 A Need for Information. ..138 Sibling Questions...... 141 Unanswered Questions. 141 Suppressed Questions. 142 Patterns of Adaptation. 144 Coping Styles. ..145 Support..146 Formal. 147 Informal. 148 6. TRANSFORMATION FROM CHILDHOOD TO ADOLESCENCE TO ADULTHOOD...149 The Changing Nature of Worries.. 150 The Changing Nature of Frustration... 150 The Changing Nature of Stress... ..151 The Changing Nature of Perceived Unfair Parental Treatment...152 The Changing Nature of the Sibling’s Need for Information & Answers .....152 The Changing Nature of Challenges. 154 The Changing Nature of the Patterns of Adaptation... 155 The Changing Nature of the Sibling Relationship. 156 The Changing Nature of the Responsibilities. 157 Future Concerns.........157 Perceived Positive Influences...............158 XII 7. DEVELOPMENTAL PROFILES, SUMMARY, AND IMPLICATIONS.159 Child Siblings: A Developmental Perspective.159 Adolescent Siblings: A Developmental Perspective.....160 Adult Siblings: A Developmental Perspective.....161 Impression of the Reflections.162 Suggestions for Practitioners. 165 Overview of Implications...165 Sibling Needs........165 Including
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