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An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis by Paulina Kodisang 200940358 Submitted in partial fulfilment of the requirements for the degree Magister Artium Socialis Scientiae (Clinical Social Work) in the Department of Social Work of the Faculty of Humanities at the University of Johannesburg Supervisor: Prof Adrian D. van Breda July 2013 Declaration This serves to confirm that I, Paulina Kodisang, ID number 731113 0740 081, student number 200940358, enrolled for the qualification Masters (Socialis Scientia) Clinical Social Work, in the Faculty of Humanities, herewith declare that my academic work is in line with the Plagiarism Policy of the University of Johannesburg, with which I am familiar. I further declare that the work presented in this minor dissertation is authentic and original unless clearly indicated otherwise, and in such instances full reference to the source is provided. I do not presume to receive any credit for such acknowledged quotations, and there is no copyright infringement in my work. I declare that no unethical research practices were used or material gained through dishonesty. I understand that plagiarism is a serious offence, and that should I contravene the Plagiarism Policy, notwithstanding signing this affidavit, I may be found guilty of a serious criminal offence (perjury). This would among other consequences compel the UJ to inform all other tertiary institutions of the offence and to issue a corresponding certificate of reprehensible academic conduct to whoever requests such a certificate from the institution. Signed at _____________________on this ___________day of _______________ 20___. Signature______________________________ Print name_____________________________ STAMP COMMISSIONER OF OATHS Affidavit certified by a Commissioner of Oaths This affidavit conforms with the requirements of the JUSTICES OF THE PEACE AND COMMISSIONERS OF OATHS ACT 16 OF 1963 and the applicable Regulations published in the GG GNR 1258 of 21 July 1972; GN 903 of 10 July 1998; GN 109 of 2 February 2001 as amended. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis ii Acknowledgements Many people have directly or indirectly contributed to this work – I wish to acknowledge my special gratitude them: To my family, especially my children, without whose patience, understanding and continued support this work could never been achieved. Thank you for always telling me that I can do it, that it will pass and all is well. I love you (for that). To my supervisor, Professor Adrian. D. van Breda, who provided me with the stimulus to persevere, with careful guidance and support, and gave me valuable criticism throughout. I am grateful for the expertise, time, effort, kindness and warmth put in helping me to complete this dissertation. Thank you Sir, you never stopped believing in me. To my manager, Dr. X. Padanilam, and colleagues,Ms. B. Nhlapo, Ms. K. Ntwape, Ms. S. Seeletse, Ms.E. Van Der Walt, Ms. Y. Zumbi, Ms. A. Rasekgoka and Dr. X. Msutu, for their effortless support, patient encouragement, advice and for providing me with valuable help. To Mrs. E. Lindsay who was extremely helpful in editing of my work. To the Gauteng Department of Health (DR-TB hospital in Gauteng) for providing the environment for such project to be possible and cultivating the culture of research. Above all, I give thanks to God Almighty, who has given me the grace to do this work. To Him be the Glory forever. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis iii Dedication I dedicate this work to the following people: First, to the patients who participated in this project, making it possible through their courage and unselfish love. Their shared stories of their experiences will continue to touch and shape the lives of many, instilling hope faith and love. Second, to the late John Max Mehliss, who demonstrated great love for mankind through his humanitarian deeds. Thank you – the love and interest in people matters. And third, in memory of my father. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis iv Abstract The focus of this study is to understand patients’ experience of the long-term hospitalization from drug resistant tuberculosis (DR-TB). Tuberculosis (TB) has been prevalent in many societies over a long period with significant effects, and the World Health Organisation (WHO) has declared TB a global emergency. The eventual emergence of DR-TB globally has added to the TB burden. DR-TB is highly infectious and difficult to treat, with less chance of cure, more complications of the disease and more side effects of treatment. It is also more expensive to treat. The treatment and management of DR-TB requires a protracted course of medication (18-24 months), requiring long- term hospitalization, which is often involuntary. Hospitalization involves complete withdrawal of patients from their regular social environment. When DR-TB patients are hospitalized, it means that they can no longer perform their normal roles. Prolonged hospitalization brings sudden changes and interrupts the patients’ lives and compounds all kinds of losses. The isolation of DR-TB patients in the hospital, away from the social environment, to receive medical treatment and management of the disease, can have a complex biopsychosocial impact on the patient. DR-TB is complex and requires a multidisciplinary approach, not just medical treatment. The key to DR-TB control and management requires biopsychosocial intervention to ensure holistic care and treatment of those infected. Social work care and support is imperative and plays a very significant role. My premise is that DR-TB patients, who are hospitalized for a long time experience and confront overwhelming existential problems which they are unable to understand and address – questions of mortality, purpose and meaning, hope, belonging and identity. Yalom (1980) states that the givens of existence are important and will happen to each person during life. Unless they are discovered, one’s existence will be frustrated, leading to pain and great confusion as well as an inauthentic existence. The existential issues are very painful, with devastating and complex effects on their lives, and require adequate and relevant social work care and support. The existential framework is vital, as different people attach different meanings to their daily life experiences of being hospitalized for DR-TB. This will enable the social worker to explore, understand and raise patient awareness of his/her existence and help the patient deal effectively with these issues. This study seeks to answer the question: What is the experience of long term hospitalization like for DR-TB patients? This study adopted a qualitative, exploratory-descriptive approach to understand in-depth the patients’ experience of being hospitalized for a long time due to DR-TB.A An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis v phenomenological research design was used in this study to describe and reduce the participants’ experiences to a central meaning or essence of experience. This study was conducted at a DR-TB hospital in Gauteng with three adult participants, who were living with DR-TB and had been in hospital for at least 12 months. Unstructured interviews were used to explore the participants’ existential experience of long term hospitalization due to DR-TB. The history of existentialism, what it is, philosophy and clinical practice is outlined, and followed by a discussion on Yalom’s existential framework on how to understand and use it to identify and deal with the patients’ existential problems. It is observed in this study that the participants experienced existential concerns emanating from their long term hospitalization due to DR-TB which they could not understand and did not know how to deal with. They were as a result distressed, overwhelmed, frustrated and confused, with constant emotional chronic pain. Such participants’ experiences are understandable since human beings at one point of their life are faced with problems which arise from an individual person’s concerns about existence (Yalom, 1980). Six themes emerge that are consistent with literature for this study: anxiety, hospitalization and death; time; isolation; loss; stigma (social pain) and loss of perspective (living with endless uncertainty). The study findings may broaden insight on the hospitalization experience of DR-TB patients, and on the psychosocial impact of prolonged hospitalization. The study concludes that the participants experience existential problems during their long term hospitalization, which they are not able to deal with