How do homeopathy users perceive homeopathy? Manon Françoise Fabienne Marie Knapen A thesis submitted for the degree of Doctor of Philosophy at the University of Otago, Dunedin, New Zealand September 2018 ABSTRACT Life expectancy has steadily increased over the last two centuries due to improvements in living standards, education, science and medicine. However, instead of basing health decisions on the best scientific evidence available, millions of people are currently using unsupported complementary and alternative medicines (CAM). The use of CAM is rising worldwide despite the lack of robust scientific evidence for their safety or efficacy. The central concern around the use of CAM is that users might delay or forgo the use of conventional medicine potentially leading to severe health deteriorations. Homeopathy, one of the most widely used CAM, is particularly interesting as its proported mode of action is deemed impossible by current scientific knowledge. Moreover, multiple systematic reviews have come to the conclusion that homeopathy is no more effective than a placebo. Homeopathy proponents, however, claim that homeopathic remedies are an effective medical treatment, which could lead to misinformed consent of potential homeopathy users. This research project investigates how homeopathy users perceive homeopathy, especially with regards to its scientific basis. The central question addressed in this thesis is: do homeopathy users in New Zealand use homeopathic remedies because they believe the remedies to be scientifically proven to work? A sequential explanatory mixed methodology was used to answer this question, starting with collection and analysis of quantitative data via a survey. The survey results informed the design of follow-up semi- structured interviews with self-identified homeopathy users. According to the survey results, more than half of the respondents were homeopathy users. Of those respondents who were homeopathy users, 78% believed that homeopathic remedies were scientifically proven to work. This is in contrast to non-users who mostly did not believe homeopathy had a scientific basis. Interview results challenged initial findings and showed that most homeopathy users were aware of the lack of scientific evidence behind homeopathy, but used the remedies regardless. Rather than scientific ii evidence, it was revealed that participants valued personal, anecdotal, and traditional evidence when deciding to use homeopathy. The discussion argues that current communication efforts focused on the lack of scientific support for homeopathy fail to reach users. In dismissing users’ experiences and perceptions, science communicators risk increasing distrust in scientific evidence and potentially strengthening users’ beliefs by compounding an adversarial relationship. In order to limit risks and complications from avoiding conventional medicine, future research into health communication must be developed with users’ experiences and perceptions in mind. iii ACKNOWLEDGMENTS Tout d’abord, je tiens à remercier mon superviseur Dr Fabien Medvecky, qui m’a encadré, soutenu et guidé tout au long de cette thèse. Merci de m’avoir encouragé et poussé hors de ma zone de confort. Thank you to my co-supervisor Associate Professor Jesse Bering for all the constructive comments on the final draft of this thesis. I am extremely grateful to Associate Professor Ben Daniel for his help and advice regarding the survey analysis, as well as the numerous discussions around research methodologies, crucial to any sound research project. Thank you to all my survey respondents and interview participants for your time and interest. This project would not have been possible without your contribution. The fieldwork was only possible thanks to the financial help from the Centre for Science Communication and the help from fellow PhD candidate Jean Fletcher. A very special gratitude goes out to the University of Otago Doctoral Scholarship for providing the funding for the work. To Sue Harvey and Steve Ting, thank you for making me welcome at the Centre for Science Communication. Thank you to the Longnecker research lab for their feedback on both survey and interview questionnaires. I also wish to thank Andrea, Charlotte, and Kaitlyn for making lunch breaks enjoyable and making sure I always had snacks on my desk for the past few months! Thank you to my parents who supported me when I decided to move to the other side of the world to study Science Communication. Special thanks to Ali Rogers for a careful proofreading of this thesis and more importantly, for being an amazing friend from day one. Finally, the greatest thank you of all to Charles. Thank you for your continuous support and encouragement, there were a few hard times along the way but you believed in my work and abilities and helped me to believe in myself, thank you. iv TABLE OF CONTENTS ABSTRACT II ACKNOWLEDGMENTS IV LIST OF TABLES IX LIST OF FIGURES X ABBREVIATIONS XII INTRODUCTION 13 OUTLINE OF THE THESIS: 16 CHAPTER 1: LITERATURE REVIEW 18 1. WHAT IS SCIENCE? 18 1.1 SCIENTIFIC METHOD 18 1.2 SOCIOLOGICAL FRAMEWORK OF SCIENCE 20 1.3 SCIENTIFIC LANGUAGE WITHIN THE ACADEMIC CONTEXT 22 1.4 WHAT IS SCIENCE, IN THE FRAME OF THIS THESIS 23 2. HOW DO WE PERCEIVE SCIENCE? 25 2.1 THE PUBLIC UNDERSTANDING OF SCIENCE MOVEMENT AND SCIENCE-SOCIETY RELATIONSHIP 26 2.2 MAKING SCIENCE PUBLIC 28 3. WHAT IS PSEUDOSCIENCE? 32 CHAPTER 2: THE EXEMPLAR OF HOMEOPATHY 36 1. HEALTH SYSTEM 36 1.1 COMPLEMENTARY AND ALTERNATIVE MEDICINE 37 2. HISTORY OF HOMEOPATHY 41 2.1 USE OF HOMEOPATHY TODAY 44 v 3. CONTROVERSY AROUND HOMEOPATHY 45 4. HOMEOPATHY AS PLACEBO 50 CHAPTER 3: METHODOLOGY 58 INTRODUCTION 58 PHILOSOPHICAL ASSUMPTIONS 59 MIXED METHODS RESEARCH DESIGNS 61 SEQUENTIAL EXPLANATORY MIXED METHODS RESEARCH 62 VALIDITY IN MIXED METHODS RESEARCH 64 MY ROLE IN THIS RESEARCH 65 USING MIXED METHODS RESEARCH TO EXPLORE THE USE OF HOMEOPATHY IN NEW ZEALAND 66 CHAPTER 4: HOMEOPATHY USE IN NEW ZEALAND – SURVEY 68 INTRODUCTION 68 AIM 68 4.1 METHOD 69 SAMPLE AND SAMPLING STRATEGY 70 SURVEY DESIGN 70 DATA COLLECTION 73 DATA ANALYSIS & MANAGEMENT 74 4.2 RESULTS & DISCUSSION 75 4.2.1 SUMMARY OF RESPONSES DISTRIBUTION 76 4.2.2 WHAT ARE THE DEMOGRAPHIC CHARACTERISTICS OF HOMEOPATHY USERS? 78 4.2.3 DO NEW ZEALANDERS PERCEIVE HOMEOPATHY AS SCIENTIFICALLY PROVEN TO WORK? 82 4.2.4 IS THE USE OF HOMEOPATHIC REMEDIES RELATED TO DISSATISFACTION WITH CONVENTIONAL MEDICINE? 86 4.2.5 DOES THE ACCESS TO REMEDIES INFLUENCE USERS’ PERCEPTION OF HOMEOPATHY’S SCIENTIFIC BASIS? 89 4.3 CONCLUSION 92 CHAPTER 5: HOMEOPATHY USERS’ INTERVIEWS 94 INTRODUCTION 94 AIM 94 vi 5.1 RESEARCH DESIGN AND METHOD 95 SAMPLING STRATEGY 95 RECRUITMENT PROCESS 96 DATA COLLECTION 97 DATA MANAGEMENT AND ANALYSIS 97 5.2 FINDINGS & DISCUSSION 99 5.2.1 PROFILE OF INTERVIEW PARTICIPANTS 99 5.2.2 FINDINGS FROM INTERVIEWS WITH PARTICIPANTS WHO SELF-IDENTIFIED AS HOMEOPATHY USERS 100 5.3 CONCLUSION 120 GENERAL DISCUSSION 122 DO NEW ZEALANDERS USE HOMEOPATHIC REMEDIES? 123 DO HOMEOPATHY USERS PERCEIVE HOMEOPATHY AS SCIENTIFICALLY PROVEN TO WORK? 124 DOES BEING ‘SCIENTIFICALLY PROVEN’ MATTER AT ALL? 126 IF SCIENTIFIC EVIDENCE DOES NOT INFLUENCE USERS’ DECISION TO USE THE REMEDIES, WHAT DOES? 127 SCIENCE COMMUNICATION AROUND HOMEOPATHY; WHAT’S NEXT? 130 LIMITATIONS 135 RECOMMENDATIONS FOR FUTURE SCIENCE COMMUNICATION RESEARCH 136 EPILOGUE 139 REFERENCES 141 APPENDIX A – SURVEY QUESTIONNAIRE 164 APPENDIX B – SURVEY DATA COLLECTION DETAILS 172 APPENDIX C – SURVEY DATA MANAGEMENT AND ANALYSIS 173 APPENDIX D – DISTRIBUTION OF PARTICIPANTS’ BELIEFS IN THE SCIENTIFIC BASIS OF HOMEOPATHY 177 APPENDIX E – INTERVIEW GUIDE 178 vii APPENDIX F – INVITATION TO PARTICIPATE IN RESEARCH 181 APPENDIX G – CONSENT FORM 186 APPENDIX H – INTERVIEW CODING SCHEME 187 viii LIST OF TABLES Table 2-1. Components of the placebo effect: biological mechanisms, psychological processes, and social and contextual factors. ....................................................... 52 Table 4-1. Independent predictors of homeopathy use. Results from multivariate logistic regression analysis .............................................................................................. 80 Table 4-2. Pearson’s correlation between variables described in 4.2.4.1. .................... 88 Table 5-1. Themes, sub-themes, categories and additional themes from the interviews with self-identified homeopathy users. .............................................................. 101 ix LIST OF FIGURES Figure 2-1. The placebo effect is complex and comprises different factors that, combined with the drug effect contribute to the total effect of treatment. Reprinted from International. ....................................................................................................... 51 Figure 3-1. Core mixed methods designs.. .................................................................. 62 Figure 3-2. Basic procedures in a sequential explanatory mixed methods design. ....... 63 Figure 3-3. Mixed methods research design followed in this research project. ............ 67 Figure 4-1. Structure of the survey “Perception of homeopathy by homeopathy users in New Zealand”. .................................................................................................... 71 Figure 4-2. Survey responses, excluded and missing data. .......................................... 77 Figure 4-3. Use of homeopathic remedies by gender, where gender both equal 100% (n=441). Black bars represent users; white bars represent non-users.