Exploring physical disability experience in the social context (IPA)

(Case Studies of individuals with a type of Muscular Dystrophy-Duchene)

by

ACKNOWLEDGEMENT

My thanks go out to all who have helped me complete this study and with whom this project may have not been possible. In particular, my gratitude goes out to friends, facilitator and family for extensive and helpful comments on early drafts. I am also deeply indebted to the authors who have shared my interest and preceded me. Their works provided me with a host of information to learn from and build upon, also served as examples to emulate.

DECLARATION

I, [names and surname here], declare that the contents of this dissertation/thesis represent my own unaided work, and that the dissertation/thesis has not previously been submitted for academic examination towards any qualification. Furthermore, it represents my own opinions and not necessarily those of the University.

Signed __________________ Date _________________

ABSTRACT

The purpose of this study is to present rich textured, description of social experience of physically disabled persons (Duchene). This study provides an understanding the subjective experience of the participants and the impact that their relationship with the society have on their social experience as a disabled. To know and understand the knowledge, beliefs and practices of the society towards disability so as to establish the universal truth about disability and then isolate the positive practices that will promote a positive attitude of the society towards disability. Furthermore, as health and social care student, this research will give me insight into social policy and ethics as regards to disability also to recognize those policies that are essential in addressing issues of ethical dilemmas regarding physical disability in the social context. The significance of this study is to describe and gain a better understanding of the subjective social experience of physically disable person in relation to their interaction with the society and to highlight the prevailing situation being faced from this relationship. The study involves physically disabled individuals living in East London, which limits its overall scope. But it will go a long way in providing an insight into the social experience of a physically disabled person and will help to improve the right attitude towards the disabled in the British society.

TABLE OF CONTENTS

ACKNOWLEDGEMENTII

DECLARATIONIII

ABSTRACTIV

CHAPTER # 1: INTRODUCTION1

Background of the Study1

Problem of study2

Purpose of the study4

Aim and objectives of the study4

Rationale5

Research Questions5

Scope and Significance of the Study5

Structure of the thesis6

CHAPTER # 2: LITERATURE REVIEW8

Society and Disabilities8

Social Norms and Law10

Social Norms and Education15

Duchenne Muscular Dystrophy18

Physiological Changes18

Cognitive and Learning Disabilities19

Spirituality within DMD20

CHAPTER # 3: METHODOLOGY21

Research approach21

Interpretivism21

Sampling22

Sample of participants23

Instrument for data collection23

Data Analysis24

Preparation of data for analysis24

Presentation of data24

Reliability/Dependability24

Validity26

Ethical Considerations27

CHAPTER # 4: FINDINGS28

Introduction28

Analysis28

Case Analysis31

Interview Analysis34

Summary37

CHAPTER # 5: DISCUSSION AND CONCLUSION38

Discussion38

Research Question: What is the subjective social, experience of physically disabled person?38

Conclusion40

Future Research40

REFERENCES42

APPENDIX46

Interview Questions46

Proposed Interview Consent Form47

CHAPTER # 1: INTRODUCTION

Background of the Study

The muscular dystrophies represent a complex group of disorders largely characterized by progressive muscle weakness marked by myofiber fibrosis and necrosis that can affect respiratory and/or cardiac function leading to premature death. These disorders are usually caused by mutations that result in loss ...