Copyright is owned by the Author of the thesis.  Permission is given for 
a copy to be downloaded by an individual for the purpose of research and 
private study only.  The thesis may not be reproduced elsewhere without 
the permission of the Author. 
 



My Sibling and I: Exploring the experiences and coping strategies of younger siblings 

of individuals with Down syndrome 

A thesis presented in partial fulfilment of the requirements for the degree of 

 

 

 

 

 

Masters of Arts 

in 

Psychology 

 

at Massey University, Albany 

New Zealand. 

 

 

 

 

Amarit Kaur D/O Pumal Singh 

2014 



 
 



i 
 

Copyright is owned by the Author of the thesis. Permission is given for a copy to be 

downloaded by an individual for the purpose of research and private study only. The 

thesis may not be reproduced elsewhere without the permission of the Author. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



ii 
 

ABSTRACT 

Down syndrome is a lifelong condition which impacts each family member in unique 

ways. Yet, with numerous studies focused on parental coping, little is known about the 

meanings siblings attach to the relationship they share. This study aims to investigate 

the personal experiences and coping strategies of younger siblings of individuals with 

Down syndrome. Three siblings aged between 17 and 22 years were interviewed to 

gather data on their experiences and coping strategies. The interviews were recorded 

and transcribed for analysis. Data was analysed using Thematic Analysis. Findings 

suggest four major themes and eight emotional states. The four themes identified are 

Blurred ordinal roles, Growth, Coping with society’s perceptions and Future plans. 

The eight emotional states identified are feelings of Loss, Guilt, Uncertainty, 

Embarrassment, Protectiveness, Denial, Acceptance, Gratitude and Admiration.  The 

results report an overall positive experience between siblings. Challenges related to the 

lack of public awareness, social stigma and functioning levels of siblings were raised. 

Siblings reportedly engaged in both, emotion-focused and problem-focused coping 

strategies. Variables such as family size and sibling’s level of functioning were found 

to account for some of the differences across the case studies. The discussion provides 

suggestions on the practical application of findings, limitations and recommendations 

for future research.  

 

 

 

 



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ACKNOWLEDGEMENTS 

My sincere gratitude goes out to all the people who have helped me through the 

journey of completing this thesis:  

Heartfelt thanks to Dr. Keith Tuffin who took on the role as my main supervisor for 

this research. His valuable comments, patience, expertise and guidance have benefitted 

me tremendously on this learning journey.  

Dr. Tatiana Tairi, my co-supervisor, for her comments, encouragements and support. 

Auckland Down Syndrome Association (ADSA) for their immense support in assisting 

with the advertisement and recruitment of participants. ADSA’s support has 

contributed significantly to the success of this project.  

My partner, who has accompanied me on this journey, thank you for being so caring 

and always encouraging me to achieve more. Thank you for staying up late with me as 

I study and providing me with opportunities to relief stress. Most of all, thank you for 

the cups of coffee, and your unwavering love, support and belief in me.  

Friends and family, near and far, who have always encouraged and motivated me 

through the difficult parts of this journey. I am grateful for the support they have 

shown me and the words they have shared with me. I would not have reached this 

point without them.  

 

 

 

 



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CONTENTS 

Abstract…………………………………………………………………………………ii 

 

Acknowledgements……………………………………………………………………iii 

List of Appendices……………………...…………………………………………….viii 

 

CHAPTER 1 – INTRODUCTION..……………………………………………………1 

1.1 Aims of the Study…..…………………………………………………………..5 

1.2 Organization of the Thesis……………..……………………………………….6 

CHAPTER 2 – DOWN SYNDROME 

 2.1 Overview……………………………………………………………………7 

 2.2 Down 

syndrome………………………………………………………………………………8 

 2.3 Chapter Summary…………………………………………………………11 

CHAPTER 3 – SIBLING RELATIONSHIP 

 3.1 

Overview…………………..…………………………………………………………..12 

 3.2 Importance of Sibling Relationship……………………………………….13 

 3.3 Variables that affect Sibling Relationship………………...………………18 



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 3.4 Chapter Summary…………………………………………………………22 

CHAPTER 4 – DEVELOPMENTAL STAGES 

4.1 Overview……………………..……………………………………………23 

4.2 Siblings and Developmental Milestones………………………………….24 

4.3 Developmental Stages and Disability…………….……………………….26 

4.4 Characteristics of Disability………..……………………………………..28 

4.5 Life Stages and Evolving Roles of Siblings………………………………31 

4.6 Chapter Summary…………………………………………………………34 

CHAPTER 5 – CAREGIVING 

 5.1 Overview…………………..………………………………………………35 

 5.2 Caregiving…………………………………………………………………36 

 5.3 Caregiving in Down syndrome…………………...……………………….39 

 5.4 Chapter Summary…………………………………………………………41 

CHAPTER 6 – COPING  

 6.1 Overview……………………………..……………………………………42 

 6.2 Theoretical Background…………………...………………………………43 

  6.2.1 Role of Perceptions and Appraisals in coping………..…………46 

  6.2.2 Siblings’ coping methods……………………………………….47 

 6.3 Coping as a family………………………..………………………….……50 



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 6.4 Factors that influence coping in siblings………...…………………….….51 

 6.5 Chapter Summary…………………………………………………………53 

CHAPTER 7 – THE PRESENT RESEARCH 

 7.1 Aims of Study…………………………………..…………………………54 

 7.2 Rationale and Importance of Study……………………………………….55 

CHAPTER 8 – METHOD…………….………………………………………………57 

 8.1 Participants……………………………………….……………………….58 

 8.2 Interview Schedule…………………………….………………………….59 

 8.3 Procedures…………………………………………………………………60 

  8.3.1 Ethics Committee…………………………………..……………60 

  8.3.2 Informed Consent……………………………………………….61 

  8.3.3 Confidentiality and Anonymity…………………………………62 

 8.4 Data Collection……………………………………………………………63 

  8.4.1 Compensation………………………………..………………….64 

CHAPTER 9 – RESULTS……………………………….……………………………65 

 9.1 Overview……………………………………………..……………………66 

 9.2 Case Studies……………………………………….………………………67 

  9.2.1 Blurred Ordinal Roles………………………………..………….69 

  9.2.2 Coping with Society’s Perceptions………………………...……74 



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  9.2.3 Growth…………………………………………..………………79 

  9.2.4 Future Plans………………………………………….………….82 

 

CHAPTER 10 – DISCUSSION 

 10.1 Overview……………………………………...………………………….86 

 10.2 Main Themes…………………………………….………………………87 

 10.3 Limitations……………………………………………………………….93 

 10.4 Implications and Recommendations for Future Research…………….…95 

CHAPTER 11 – CONCLUSION…………………………..…………………………97 

REFERENCES 

APPENDIX A 

APPENDIX B 

APPENDIX C 

 

 

 

 

 

 



viii 
 

List of Appendices 

 

APPENDIX A  

Ethics Low Risk Notification 

 

APPENDIX B 

Letter by Auckland Down Syndrome Association  

 

APPENDIX C – Participant Forms 

Information Sheet 

Participant Consent Form 

Transcript Request Form