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Embodiment, Pain, and Circumcision in Somali-Canadian Women

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Embodiment, Pain, and Circumcision in Somali-Canadian Women EMBODIMENT, PAIN, AND CIRCUMCISION IN SOMALI-CANADIAN WOMEN By Emily Glazer A thesis submitted in conformity with the requirements for the degree of Master of Science, Graduate Department of the Institute of Medical Science University of Toronto Copyright 2012 EMBODIMENT, PAIN, AND CIRCUMCISION IN SOMALI-CANADIAN WOMEN Emily Glazer Master of Science Institute of Medical Science University of Toronto Copyright 2012 ABSTRACT Female genital cutting/circumcision/mutilation (FGC) is found predominantly in the Sahel, Northern Africa, removing parts/all of the clitoris, labia minora and majora in girls. Cutting the highly innervated external genitalia may change sensory processing leading to chronic pain. Fourteen Somali women in the Greater Toronto Area (21-46, Type III FGC) completed qualitative, quantitative and psychophysical methods to evaluate pain. Interviews analyzed by interpretive phenomenology form the core method, examining circumcision stories and present, embodied life. The second Short Form McGill Pain Questionnaire and quantitative sensory testing with a vulvalgesiometer form secondary components. Somali women with FGC have pain-filled stories about circumcision and daily life. Socio-cultural considerations are central for women to comprehend how their own bodies feel. SF-MPQ-2 indicates low intensity or no pain symptoms; however, many body regions were indicated. QST reveals low vulvar pressure-pain thresholds. Reports from three measures suggest that FGC may cause sensory changes including chronic pain. ii ACKNOWLEDGEMENTS AND CONTRIBUTIONS PRINCIPAL INVESTIGATOR AND GRADUATE SUPERVISOR Gillian Einstein, PhD Dalla Lana School of Public Health (DLSPH); Department of Psychology, University of Toronto COMMUNITY ADVISORY BOARD Maryann Barre, MD Rexdale Community Health Centre Ms. Hawa Abdi Unison Health and Community Services Ms. Habiba Adnan Family Services Toronto QUALITATIVE STUDY Janice Du Mont, EdD Women‘s College Research Institute (WCRI) Robin Mason, PhD WCRI Jan Angus, PhD Faculty of Nursing, University of Toronto Deanna Duplessis, MA DLSPH, University of Toronto QUANTITATIVE STUDY Allan Gordon, MD Wasser Centre for Pain Management, Mt Sinai Hospital Sheila Dunn, MD Family Practice Health Centre, Women‘s College Hospital Sarah Romans, MD Department of Psychiatry, University of Toronto Caroline Pukall, PhD Department of Psychology, Queen‘s University Hawa Farah, MD GENERAL Shelley Wall, PhD Biomedical Communications, University of Toronto Ms. Kowser Omer-Hashi WCRI RESEARCH ASSISTANCE AND CRITICAL FEEDBACK Abi Muere, Kimberly Blom, Adnan Javed, Justina Jueun Lee, Mekong Huang, Peter Bevan PROGRAM ADVISORY COMMITTEE Ze’ev Seltzer, DMD Faculties of Dentistry and Medicine, University of Toronto; University of Toronto Centre for the Study of Pain; Centre for International Health (DLSPH); University Health Network Joel Katz, PhD Department of Psychology, York University; Department of Anesthesia, Faculty of Medicine, University of Toronto; University Health Network Brenda Toner, PhD Department of Psychiatry, Faculty of Medicine, University of Toronto; Centre for Addiction and Mental Health iii TABLES OF CONTENT Abstract ii Acknowledgements and Contributions iii List of Abbreviations v List of Figures and Tables vi Preamble 1 I. BACKGROUND 7 Female Genital Cutting/Circumcision/Mutilation 8 Theoretical Orientation 12 Embodiment 13 Biocultural Model of Illness 17 Literature Review of FGC and Health Complications 20 Recent systematic reviews 21 Research focuses and findings: Sexual and Reproductive Health 22 Evidence for a neurobiological perspective 22 Innervation of the Perineal Region and External Genitalia in Women 25 Pain: A multidimensional phenomenon 27 Mixed-Methods 30 Overview of the Field of Mixed-Methods 31 II. OUR STUDY 35 Research Aims 35 Establishment of the Community Advisory Group 36 Inclusion/Exclusion criteria 36 Recruitment 36 Qualitative Study 37 Interviews and Narratives 37 Selecting phenomenology: Philosophy made method 38 Quality criteria 40 Summary of methodology: Studying the neurobiology of FGC with phenomenological questions 42 Methods 42 Data collection 43 Data Analysis 44 Findings 50 Qualitative themes 53 Discussion 79 Quantitative Study 91 Methods 91 Results 95 Discussion 104 Integrating Findings from all Methods 116 Limitations of the Study 123 Conclusions 125 Future Directions 127 Bibliography 130 Appendices 144 I. Phenomenological bracketing 144 II. CASP tool 146 III. SF-MPQ-2 150 iv LIST OF ABBREVIATIONS CAG Community advisory group CHC Community health centre CR Critical realism CNS Central nervous system FGC Female genital cutting/circumcision/mutilation GCT Gate Control Theory of pain GHQ-12 General Health Questionnaire, twelve item version GTA Greater Toronto Area MPQ McGill Pain Questionnaire NKCHS Norwegian Knowledge Center for the Health Services NRS Numerical rating scale PPT Pressure-pain threshold QST Quantitative sensory testing SF-MPQ-2 Short Form McGill Pain Questionnaire, second version WHIWH-CHC Women‘s Health in Women‘s Hands Community Health Centre WHO World Health Organization WCRI Women‘s College Research Institute v LIST OF FIGURES AND TABLES Figure 1: Prevalence of FGC in the Sahel region of Africa Figure 2: The World Health Organization (2008) modified and previous classification of FGC Figure 3: Biocultural Model of Pain (Bates, 1987) Figure 4: Innervation of the female perineum Figure 5: Mixed-methods research designs (Creswell, 2009) Figure 6: Process of Data Collection Figure 7: Units of meaning from participants interviews converging and forming themes Figure 8: Body regions discussed by participants in the interviews Figure 9: Four vulvar sites tested with QST Figure 10: Qualitative and quantitative responses from five participants Table 1: Socio-demographic profiles of participants Table 2: Participant medical histories and GHQ-12 scores Table 3: Participant‘s responses to questions about sexuality on the medical history Table 4: SF-MPQ-2 results and participants‘ medical histories Table 5: SF-MPQ-2 subscale means and ranges Table 6: QST (vulvalgesiometer) results Table 7: Comparing the findings of the current study with previous studies Table 8: Quantitative and qualitative methods elicit novel findings vi 1 PREAMBLE My research interests and involvement in the FGC study The project described here is a mixed-methods study looking at the long-term neurobiological consequences of female genital cutting/circumcision/mutilation (FGC). The impetus for participating in the research, initiated by my supervisor Dr. Gillian Einstein (GE), stemmed from my broader interests in chronic pain as a biocultural phenomenon – that is, a phenomenon whose development, maintenance and experience refract through a joint biological and cultural prism. Pain is an exemplary instance of the body being realized out of the constant exchange and collaboration of biological, social, psychological, cultural, environmental (and other) elements. With pain that is chronic, the intrigue of the puzzle is amplified. A node within viewing pain as a biocultural phenomenon is the examination of gender and chronic pain, an intersection I felt was sorely needed and underexplored. Gender here is understood as socially constructed roles and behaviours, categories of masculine and feminine, rather than biological sex. However, my interest in how social constructs like gender are material to physical bodies renders the distinction blurry. Other writers share the suspicion of dividing sex from gender so resolutely. 1 In querying gender and chronic pain, some of my motivating questions included: Why do women suffer from more chronic pain conditions? Why do ―medically unexplained‖ conditions abound among these? How does this relate to depression and anxiety, two bitter and close companions of chronic pain also disproportionately found in women? How are these outcomes related to women‘s (still) lesser social status? What is the relationship between mind-body separatism that dominated pain science and the Cartesian cousin view of seeing woman as more bodily, less reasoned? Given the convergence of complex (biocultural) influences that feed into pain becoming chronic, what kind of neuroscience could explore and consider complexity that is not only physiological but also sociological? Such a neuroscience would certainly have to be feminist – attuned to socio-cultural context and situation, power and identity, and concerned with 1 That said, speaking separately of gender or sex still remains useful for descriptive and heuristic purposes. 2 equality and the health of all bodies. Such a neuroscience would force the social and basic sciences of pain to converse (cross-talk!) in order to contemplate the materiality of social constructions – such as how sexism does violence and materially impacts women‘s bodies both directly and diffusely – and the corporeality of social subjects. A further conversation seems merited between psychological and sociological foci on pain in order to bridge what happens in individual psyches with wider immersion in a social and cultural world. I was aware that a research program concerning biological sex and pain was underway – a very positive development particularly considering the historical dearth of female animal subjects in pain research (and other biomedical research), which is a grave juxtaposition to the most common clinical problem: a woman in pain. Important studies have looked at topics such as pain threshold and tolerance, and nociceptive and analgesic responses in
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