HEALTH PROMOTION EXPERIENCES AND IDEAS FOR HEALTH PROMOTION IMPROVEMENTS: AN INTERPRETATIVE PHENOMENOLOGICAL STUDY OF NOVA SCOTIAN WOMEN WITH MULTIPLE SCLEROSIS THROUGH A FEMINIST, DISABILITY RIGHTS LENS by Kristine Lynn Webber Submitted in partial fulfilment of the requirements for the degree of Master of Arts at Dalhousie University Halifax, Nova Scotia July 2014 © Copyright by Kristine Lynn Webber, 2014 Dedications Without the support of the following people, I would not have completed this thesis. I wish to first thank Dr. Susan Hutchinson, who has always been available to answer my questions and who has offered her expertise, encouragement and support. I wish to thank Dr. Christine Short for her support in providing access to the MS clinic and referring participations to my study. Dr. Short’s devotion to the health of women with MS is truly inspirational. I also wish to thank Dr. Judy MacDonald, for her insights in feminist, disability rights literature and Dr. Debbie Martin for her thoughtful insights and calming presence. Without the ongoing encouragement and support of Dr. Leslie Brown, Dr. Jane Gordon, Andrew Ritcey, and the late Dr. Patricia Baker, I would have never had found the courage to pursue my education. Your support, friendship and encouragement will never be forgotten. I also wish to thank my family. Firstly, I wish to thank my mother, Darlene Webber and my father, Bruce Webber, for their love and support. I also wish to thank my children Laura Gibson and Joseph Gibson, who have walked through their childhood and teenage years always accepting me as a working mother and part-time student, without complaint. Their companionship and the joy and laugher they have brought into my life have afforded me the energy to endure and grow during my time as a student. Finally, I wish to thank my husband, Murray Russell for his patience, companionship and unwavering belief in me. It is rare to find someone in this world who believes you can lasso the moon. ii TABLE OF CONTENTS LIST OF TABLES ........................................................................................................ vii LIST OF FIGURES......................................................................................................viii ABSTRACT................................................................................................................... ix LIST OF ABBREVIATIONS USED.............................................................................. x CHAPTER I. INTRODUCTION........................................................................................ 1 Health Promotion Models and Programs........................................................................ 1 Health promotion. ....................................................................................................... 1 Models......................................................................................................................... 2 Health promotion programs. ....................................................................................... 2 Critical Disability and Feminist Lens ............................................................................. 3 Statement of Problem and Research Questions .............................................................. 4 Study Design................................................................................................................... 4 Summary.........................................................................................................................5 Organization of the Chapters .......................................................................................... 6 CHAPTER II. LITERATURE REVIEW ........................................................................... 7 Description of MS........................................................................................................... 7 Challenges for women with MS., ............................................................................... 8 Summary................................................................................................................... 10 Health Promotion Models............................................................................................. 10 WHO and the Ottawa Charter................................................................................... 10 The Expanded Chronic Care Model. ........................................................................ 11 Health Promotion Needs of Persons with Disabilities.................................................. 12 Health Promotion Programs.......................................................................................... 16 Health promotion for women with disabilities. ........................................................ 16 Health promotion programs for people with MS...................................................... 18 Summary................................................................................................................... 20 Models of Disability ..................................................................................................... 21 Critical Feminist and Disability Rights Theories.......................................................... 22 Gender and disabled women..................................................................................... 24 Empowerment............................................................................................................... 25 iii Summary....................................................................................................................... 27 CHAPTER III. RESEARCH METHOD AND DESIGN................................................. 29 Introduction................................................................................................................... 29 Study Site......................................................................................................................30 Methodological Approach ............................................................................................ 30 Research Design and Study Context............................................................................. 33 Sample....................................................................................................................... 33 Standard of care. ....................................................................................................... 34 Recruitment............................................................................................................... 35 Informed consent process ......................................................................................... 35 Interview guide. ........................................................................................................ 35 Participant interview procedures............................................................................... 36 Data management...................................................................................................... 37 Data analysis and memoing. ..................................................................................... 37 Data write-up and dissemination. ............................................................................. 39 Criteria for Trustworthiness.......................................................................................... 39 Researcher’s perspectives. ........................................................................................ 39 Trustworthiness......................................................................................................... 40 Harms and benefits (ethical concerns)...................................................................... 40 CHAPTER IV. RESULTS................................................................................................ 42 Introduction................................................................................................................... 42 Introduction to the Study Participants........................................................................... 42 Contextual Experiences of MS ..................................................................................... 47 First experiences of MS. ........................................................................................... 48 Pushing through MS. ................................................................................................ 51 Interactions with others............................................................................................. 53 Interactions with family ............................................................................................ 53 Interactions with healthcare providers...................................................................... 55 Interactions with the public....................................................................................... 58 Internal conflicts and wishing to remain independent. ............................................. 60 The burden and uncertainty of MS. .......................................................................... 62 iv Summary of contextual experiences. ........................................................................ 63 Health Promotion Participation..................................................................................... 63 Community-based programs..................................................................................... 64 In