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Understanding Hellp Syndrome in the South African View metadata, citation and similar papers at core.ac.uk brought to you by CORE provided by UWC Theses and Dissertations UNDERSTANDING HELLP SYNDROME IN THE SOUTH AFRICAN CONTEXT: A FEMINIST STUDY by MICHELLE ANDIPATIN Submitted in accordance with the requirements for the degree of DOCTOR OF PHILOSOPHY DEPARTMENT OF PSYCHOLOGY In the Faculty of Community and Health Sciences of the UNIVERSITY OF THE WESTERN CAPE Supervisor Professor Tamara Shefer Co-Supervisor Professor Kelvin Mwaba NOVEMBER 2012 ABSTRACT This thesis is about HELLP Syndrome (hemolysis, elevated liver enzymes, low platelet count in pregnancy): a devastating maternal hypertensive complication that results in multi-system changes that can rapidly deteriorate into organ failure and death. Despite rapid advancesin medical technology and medical science this disease continues to take the lives of women and their infants. The only effective intervention for this disorder is immediate termination irrespective of the gestational stage of the pregnancy. The primary objective of this thesis was to explore the subjective experiences and meaning- making processes of women in and through their high-risk pregnancies. This objective crystallised into the following aims: to facilitate and listen to the voices of women who were HELLP Syndrome survivors; to explore the reported bodily, psychological and emotional experiences of HELLP Syndrome survivors; to understand the role medical intervention and biomedical discourses play in these women’s experiences and finally to explore the subjective experiences of HELLP Syndrome in the context of traditionallyheld notions of motherhood. The study was couched in a feminist poststructuralist epistemology. A material-discursive framework which comprised phenomenological and poststructuralist theorising was usedin an attempt to understand both the lived experiences as well as the discursively constructed nature of those subjective experiences. Thus the analysis encompassed both a broadly phenomenological framework to understand the lived experiences of HELLP Syndrome, and a discourse analysis to explore the meaning-making processes of participants in relation to larger social discourses, in particular the dominant biomedical and motherhood discourses. A qualitative approach using in depth semi-structured interviews was utilisedto gather data. Eleven participants from very diverse backgrounds consented to be part of thisstudy. The findings of the study highlighted the immense trauma, difficulties and challenges participants faced in these high-risk situations. What was evident from the analysis was that their experiences were so diverse and werecompletely shaped by the severity of the disorder and the gestational stage of the pregnancy. Some women ended up in the Intensive Care Units (ICU) and had near-death experiences, some had very premature babies, while some of the participants lost their babies during the process. With regards to the emotional, psychological and corporeal aspects of the disorder,participants described their situations as a disaster, i painful and difficult. Due to the rapid deterioration of symptoms, they described the tempo of these events as a whirlwind in which they felt they had no control. Emotions ranged from shock, total disbelief and surprise to anger, helplessness and powerlessness. Lacking knowledge and access to appropriate information further compounded the situation for participants. Theparticipants who had premature babies found the Neonatal Intensive Care Unit experience (NICU) extremely challenging and stressful. A discourse analysis revealed that women’s talk was shaped by the disciplinary frameworks oftechnocratic medicine and patriarchal notions of gender. Participants’ discourses about their encounters inthe medical context werelocated in, and shaped by, the structure of health care in our country. In this regard binaries (like private versus public health care, women versus men and nurses versus doctors) were evident. Furthermore their hospital stay reflected their experiences in the Intensive Care (ICU) and the Neonatal Intensive Care Units (NICU) both of which are highly technologically orientated and managed. Biomedical discourses that filtered through the participants’ talk were: medicine as indisputable truth;mechanistic model of the body as machine; medical doctors as gods and the foetus as ‘super subject’. Discourses of risk were inevitably taken up as participants tried to make sense of both their current pregnancies and the potential ones to follow. The passage into motherhood for these participants was dependent on whether they had live babies or not. For those who had live babies it was a difficult time as they had to contend with their own recovery as well as the prematurity of their infants. The NICU experience was described as tiring, trying and cumbersome. For mothers who lost their babies it was a time of profound sadness and loss coupled to the notion that motherhood itself was lost. This loss of their children symbolised broken dreams, severed connections and a powerful taboo. In addition, discourses in which motherhood was naturalised and normalised saturated their talk and framed their experience in a narrative of deficit and failure. The ideologies of mother blame and the ‘all responsible’ mother were pervasive in their discussions. In conclusion, this high-risk situation represented a time of tremendous uncertainty and unpredictability for all participants and was powerfully shaped by dominant discourses about motherhood and the biomedical discursive and institutional framework in which participants were subjugated. The study thus highlights how the HELLP syndrome experience illuminates the erasure of women’s subjectivities while the foetus/infants’ life takes precedence. This has significant ii implications for scholarship in general and feminist scholarship in particular and highlights the need for this type of engagement in an area that has remained on the periphery of feminist research. iii DECLARATION I hereby declare that this dissertation, unless specifically indicated to the contrary in the text, is my original work and that I have not submitted it, or any part thereof, for a degree at another university. ___________________________ iv ACKNOWLEDGEMENTS “Where do I begin, to tell the story…..”Let me commence the story with a quote by Anais Nin “ And the day came when the risk to remain tight in a bud was more powerful than the risk it took to blossom” This quote captures both my pain and my pleasure throughout this journey:ajourney with many moments, many lifetimes it feels;a journey which symbolises my absolute coming out of and into mySelf. And with the unfolding of these moments there are many people to whom I am extremely grateful. Words can be so limiting, therefore I will attempt to infuse what I wish to express with an absolute vibration of love. In writing up this thesis, I often felt adrift, lost at sea, many a times in the still of the night. Despite this symbolic darkness, I felt the gentle Presence of a guiding light –sometimes faintly lit, other times beaming, lighting up the course to be chartered. Whether dimly lit or brightly beaming, this Presence remained throughout the journey, until my final destination. Now standing on the gangway, disembarking, I reverently thank God for being a co-creator, a co-navigator on my journey to wholeness. My daughter, Kiana, to whom this thesis is dedicated, youcame to awaken me from my slumber. Although our interlude was so brief, you taught me more in 24 weeks than most people teach each other in a lifetime. Thank you for “causing me to re-member” who I am (Neale Donald Walsch, 2007). My son, Scanlon, and my daughter, Bryn, you represent the preciousness of life itself. To the two of you, my teachers in the school of remembrance, I thank you in all humility for all you had to endure and experience the absence of your mother for so many hours at a time, had to endure the take-outs so often and as both of you so poignantly commented, had to put up with a mom with her head in books all the time. I love you both. Professor Tamara Shefer, you have been another steady presence in my life. I acknowledge and appreciate your tremendous spirit. I admire and respect your indomitable intellect which has served as such an inspiration to me throughout this endeavour. May you continue to serve those whom you supervise in this awe-inspiring manner. Professor Kelvin Mwaba, you are more than a colleague and a co-supervisor. You are my mentor, my friend and a very present help in times of trials. I thank you for your consistency and continued support throughout my academic career. v I wish to thank the women who have afforded me the opportunity to speak on their behalf. What an honour to be privy to such difficult experiences and emotions. I will forever remember and honour your stories –stories recounted so bravely, with so much courage. To those of you who have lost your babies, may God continue to bless and comfort you and your families. There are so many friends and colleagues who have played instrumental roles in my work, whom I wish to acknowledge and thank. There are a few I wish to publicly thank. Jennifer Sharpley, my dear friend and confidante. Jen you are the eternal optimist embodied. Your optimism and exuberant spirit lifted my own spirit on so many occasions. Thank you for always putting things in perspective for me and always reminding me of who I am. Tamara Gersohn, your unwavering support helped me ride some fairly tumultuous waves of change so often on this journey. Your soft, gentle voice always served to calm me and centremyself. Thank you for your continued encouragement. Yolanda Kleinhans, your belief in me always encouraged me to never abandon ship. Thank you for all the prayers, cups of tea at work and constant reminders of breaking the cord at the finishing line. Now I know what you referred to. The feeling is unmatched. Thelma, I am forever grateful for teaching me the finer things in life.
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