Chapter 1: Introduction

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How to cite this thesis

Surname, Initial(s). (2012) Title of the thesis or dissertation. PhD. (Chemistry)/ M.Sc. (Physics)/ M.A. (Philosophy)/M.Com. (Finance) etc. [Unpublished]: University of Johannesburg. Retrieved from: https://ujdigispace.uj.ac.za (Accessed: Date). 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___.

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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.

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 on their own. Therapy based on the existential approach plays a very critical role and is helpful in exploring and dealing effectively with these existential concerns. Therapeutic intervention, with necessary care and support, will help the patients become aware and understand their situation, including own behaviour and emotions and help them confront and manage their situation effectively achieving change and wholeness. The medical social worker plays an important role in this regard.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis vi

Table of Contents

Declaration ...... ii Acknowledgements ...... iii Dedication ...... iv Abstract ...... v Table of Contents ...... vii

CHAPTER 1: INTRODUCTION ...... 1 1.1. Introductory Background ...... 1 1.2 Motivation for Study ...... 5 1.3 Problem Statement and Research Question ...... 6 1.4. Goal and Objectives ...... 7 1.5. Overview of Research Methodology ...... 7 1.6. Limitations of the Study ...... 8 1.7. Definitions of Concepts ...... 9 1.8. Chapter Outline ...... 11 1.9. Conclusion ...... 11

CHAPTER 2: LITERATURE REVIEW ...... 12 2.1. Introduction ...... 12 2.2. TB and DR-TB ...... 12 2.3. Selecting a Theoretical Lens ...... 26 2.4. Historical Development of Existentialist Philosophy ...... 28 2.5. Defining and Describing Existentialism ...... 29 2.6. Existential Philosophy and Clinical Practice ...... 32 2.7. Existentialism and Long Term Hospitalization for DR-TB ...... 34 2.8. A Brief Introduction Yalom’s Existential Psychotherapy ...... 35 2.8.1. Death (and Death Anxiety) ...... 36 2.8.2. Freedom ...... 39 2.8.3. Isolation ...... 41 2.8.4. Meaninglessness...... 41 2.9. Conclusion ...... 45

CHAPTER 3: METHODOLOGY ...... 46 3.1. Introduction ...... 46 3.2. Research Goal and Objectives ...... 46 3.3. Research Approach and Design ...... 47

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis vii

3.4. Population and Sampling ...... 49 3.5. Data Collection Instrument and Method ...... 51 3.6. Data Analysis ...... 55 3.7. Rigour and Trustworthiness ...... 59 3.8. Ethical Considerations ...... 62 3.9. Conclusion ...... 62

CHAPTER 4: FINDINGS AND DISCUSSION ...... 64 4.1. Introduction ...... 64 4.2. Narrative Distillations: Person-Centred Analysis (First Voice) ...... 64 4.2.1. Narrative Summary for Dikeledi ...... 64 4.2.2. Narrative Summary for Goitsemodimo ...... 66 4.2.3. Narrative Summary for Moagi ...... 68 4.3. The Experience of Long Term Hospitalization: Thematic Analysis (Second Voice) ...... 70 4.3.1. Theme 1: Anxiety, Hospitalization and Death ...... 71 4.3.2. Theme 2: Time ...... 77 4.3.3. Theme 3: Isolation ...... 81 4.3.4. Theme 4: Loss ...... 84 4.3.5. Theme 5: Stigma (Social Pain) ...... 88 4.3.6. Theme 6: Loss of Perspective (Living with Endless Uncertainty) ...... 91 4.4. Linking Experience to Existentialism: Theory-Centred Analysis (Third Voice) ...... 95 4.4.1. Yalom’s First Theme: Death ...... 95 4.4.2. Yalom’s Second Theme: Freedom ...... 100 4.4.3. Yalom’s Third Theme:Isolation (Existential Isolation) ...... 106 4.4.4. Yalom’s Fourth Theme: Meaninglessness ...... 109 4.5. Conclusion ...... 114

CHAPTER 5: SUMMARY & RECOMMENDATIONS ...... 116 5.1. Introduction ...... 116 5.2. Summary According to Research Objectives ...... 116 5.2.2. Objective 1: Narrate the Hospitalization Experience of DR-TB Patients ...... 116 5.2.1. Objective 2: Describe Hospitalization in Relation to Key Existential Themes ...... 117 5.2.3. Objective 3: Outline the Psychosocial Impact of Long-Term Hospitalization ...... 120 5.2.4. Objective 4: Expand the Knowledge Base of Social Workers ...... 121 5.3. Recommendations ...... 121 5.4. Conclusion ...... 124

REFERENCES ...... 126

APPENDIXES ...... 132 Appendix 1: Research Information Leaflet and Informed Consent ...... 132 Appendix 2: Exemplar of the Interview Process ...... 134 Appendix 3: Exemplar of Coding ...... 137 Appendix 4: Exemplar of Developing Categories/Themes ...... 141 Appendix 5: Interview Schedule ...... 145 An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis viii

Chapter 1: Introduction

1.1. Introductory Background The focus of this study is to understand patients’ experience of the long-term hospitalization from drug resistant tuberculosis (DR-TB). DR-TB disease can be an emotionally devastating experience for patients. Hospitalized patients with DR-TB experience disruption of life from ill-health, leading to complex and devastating psychosocial problems. In addition, the long duration of DR-TB treatment, combined with severe side effects, may contribute to anxiety or depression (Ogunbanjo & Savva, 2011) emanating from the individual’s concerns about existence.

DR-TB is a complex disease and does not only require medical treatment, but holistic care. My premise is that DR-TB patients who are hospitalized for a long time experience and confront existential problems which are very painful, with devastating and complex effects on their lives, and require adequate and relevant social work care and support. It is important to pay special attention to the psychosocial issues of patients and existential issues of care, and guard against ignoring them over symptom and disease control, even though these aspects are important. Provision of enormous and on-going psychosocial support is crucial throughout the treatment and management of DR-TB disease. Medical social work is therefore best suited to meet the social and emotional needs of hospitalized DR-TB patients (Parry, 1989, p.6). “Medical social work is defined as a specific form of social case work that focuses on the relationship between the disease and social maladjustment. Thus, it is an important part of a social worker’s function to concern herself/himself with the psychosocial problems arising directly out of the nature of medical treatment” (Gehlert &Browne, 2006, p. 23).

On-going intensive counselling and psychosocial support by medical social work are particularly important, as much as in any other chronic life threatening illness. Through in-depth medical social work intervention, the social worker can more deeply understand the patients’ existential concerns, and interpret that understanding to those who are planning treatment to patients, such as the health care team, hospital management and Department of Health. Such a focus on and deepening understanding of emotional existential issues of hospitalized DR-TB patients, will eventually contribute in answering the goal and objectives of this study. Thus, medical social work is crucial in DR-TB units/hospitals.

Tuberculosis (TB) has been prevalent in many societies over a long period with significant effects. The World Health Organisation (WHO) has announced TB epidemic to be a great concern globally, and requiring urgent effective and enhanced control activities (Ginsberg & Spigelman, 2007, p. 290; An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 1

Moller & Erstad, 2007, p. 104). It is considered a very serious condition which can be fatal. There are about 9 million new cases and nearly 1.7 million deaths each year, according to the World Health Organization (WHO) (Meya & McAdam, 2007; Varma et. al., 2007; Wilson, 2009). The TB epidemic in South Africa reached such high numbers that these are considered the worst in the world. The eventual emergence of DR-TB globally has added to the TB burden. DR-TB is rife in 27 countries including South Africa. Within this country, KwaZulu Natal, Free State and Eastern Cape have the largest number of cases (Ginsberg & Spigelman, 2007; Moller & Erstad, 2007; Van Rensburg, Meulemans, & Rigouts, 2005; Wilson, 2009). The high incidence of DR-TB in South Africa is an enormous problem and challenge for the country and its citizens.

Tuberculosis is a disease caused by a bacterium (TB germ) called mycobacterium tuberculosis. It enters the body from the air we inhale (and damages our lungs).It affects the lungs mainly, but other parts of the body can also be affected (e.g. joints, spine, nervous system and other organs) (Collins, 1991, pp. 3 & 27).

TB is mostly transmitted when a person with active pulmonary TB coughs, producing small droplets (infectious droplet nuclei) that contain TB bacteria. TB is also transmitted by tiny infectious droplets which are aerosolised by spitting, talking or sneezing. Droplet nuclei can float in the air for long periods (Harries, Maher, & Graham, 2004, p. 23). Anyone who inhales the air carrying these droplets could get infected. Risky situations that increase the spread of TB disease include overcrowding, poor ventilation, person with lung cavities or being in a confined/enclosed space with a TB patient who is coughing (Craig et al., 2007).The considerable exposure to droplet nuclei is a great factor influencing an individual’s risk of TB infection. An individual’s immunity to infection is also an important factor. The more prolonged contact with the infectious droplets in the air the higher is the risk of being infected. The most infectious are individuals with smear positive TB. Those who are smear negative and culture negative are less infectious. Those with a negative culture and TB elsewhere in the body (or extra pulmonary TB) are not infectious. For TB to be transmitted there must be someone who is infected with TB of the lungs (known as pulmonary TB or PTB) and who is not yet on TB treatment. PTB is infectious and spreads easily (Collins, 1991; Harries et al., 2004).

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 2

TB symptoms include persistent cough for more than 2weeks, loss of appetite, loss of weight, night sweats and prolonged fever, tiredness and weakness (Collins, 1991; Harries et al., 2004). TB is diagnosed by asking a person with TB symptoms when visiting the clinic/hospital to cough up sputum, which will be sent to a laboratory. The sputum will be examined under the microscope and the TB germs will be looked for. A person diagnosed with TB has to be started on treatment immediately. Treatment will include a combination of tablets and injections. The period of treatment is usually six months, but sometimes longer up to 9 months.

TB is a curable disease. Success in TB management is judged by sputum conversion, and patients are regarded as cured if sputum remains negative (Collins, 1991). But TB treatment can fail if the patient fails to complete the course of treatment. With incomplete TB treatment, the TB germs become resistant to some of the usual TB drugs (or first line TB drugs). This leads to drug resistant tuberculosis (DR-TB) (Craig et al., 2007; Harries et al., 2004).

The symptoms of DR-TB are similar to those of drug sensitive or ordinary TB. DR-TB is diagnosed through physical examination, radiological (that is by conducting a chest X-Ray) and bacteriological (that is by doing sputum tests, including sputum smear and cultures)1. Sensitivity testing or the drug sensitivity test (DST) is done to determine the resistance pattern of the TB disease, and thereafter prescribing the correct regimen to the patient. Resistance pattern means the list of drugs the TB bacteria is resistant to. Therefore the DR-TB regimen depends on the resistance pattern. DR-TB, as well as multi-drug resistant TB (MDR-TB) and extensively drug resistant TB (XDR-TB), are managed in dedicated MDR-TB units or hospitals, with appropriate infection control measures to prevent the transmission (Ogunbanjo & Savva, 2011).

The standardised approach to MDR/XDR TB treatment consists of an intensive phase (6 months) with combination of oral treatment (tablets) and injectables, followed by a continuation phase of 18 months with oral treatment. Extension up to 24 months may be recommended. Second line drugs are used mainly to treat MDR/XDR TB. Most often these drugs are antibiotics (i.e. they kill the bacteria, meaning they are bactericidal) and others are bacteriostatic, meaning that they stop the TB bacteria from growing (Harries et al.,2004; Ogunbanjo& Savva, 2011). The recommended standardised treatment of MDR-TB often requires the use of at least five antibiotics, one of which is received as a daily injection according to Ogunbanjo & Savva (2011, p. 44).

Drugs used to treat MDR/XDR TB (second line drugs) have more side effects than the first line drugs (Jain & Mondal, 2008; Ogunbanjo & Savva, 2011). These side effects are usually temporary

1 Sputum smear and sputum culture samples are taken monthly (and sent to the laboratory) to monitor the patient’s progress while on treatment. Laboratory reports on sputum results are provided. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 3 and reversible, but occasionally permanent. Common side effects may be reported, such as nausea, vomiting, kidney problems, liver problems/toxicity, peripheral nerve problems, visual concerns (impaired vision), skin reactions and psychiatric symptoms. These side effects are temporary and reversible, while visual problems are reversible up to a certain point. Hearing problems (hearing loss) can result as a side effect and this is usually permanent.

Patients can stop their DR-TB treatment only when advised by their doctor. Continual monitoring of patients discharged from DR-TB treatment will continue for two to three years at the DR-TB hospital/unit outpatient clinic. Patients will have to visit the hospital six monthly, and have chest X- Rays taken which are then examined by the doctor.

DR-TB is a man-made problem and occurs when TB is mismanaged. TB can become drug resistant when, for example, the patient does not complete the course of treatment; health care workers prescribe the wrong dosage; treatment is too short; the regimen is incorrect; and there are problems or shortages in the supply of drugs (Ogunbanjo & Savva, 2011). DR-TB can be MDR-TB or XDR- TB. Multidrug resistant Tuberculosis (MDR-TB) is the TB where the mycobacterium (TB germ) is resistant to treatment by Isoniazid and Rifampicin, which are the two potent TB drugs (Ogunbanjo & Savva, 2011), and extensively drug resistant tuberculosis (XDR-TB) is defined as TB that is resistant not only to Isoniazid and Rifampicin, but also to fluoroquinolones (antibiotics, in tablet or injection form), which are major and backbone TB drugs (e.g. ofloxacin) and resistance to one or more injectable anti-TB drugs, e.g. kanamycin, amikacin and capreomycin (Jain & Mondal, 2008; Ogunbanjo & Savva, 2011).

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, for periods from 6 to 24 months, depending on the person’s response to medical treatment. Hospitalization involves complete withdrawal of patients from their regular social environment (Ginsberg & Spigelman, 2007; Wilson, 2009). The South African National Department of Health is required by law to fulfil effectively the function of the treatment, management and control of TB, including DR-TB, to curb the spread of the disease in communities. The South African National Department of Health, therefore, functions within the relevant legislative framework and public health ethics which serves as a guide considering the rights of both communities and the sick individual person, and keeping a fair balance to ensure and promote public health as far as TB is concerned (Ogunbanjo & Savva, 2011, p. 9). The South African Department of Health has adopted this form of treatment for people with confirmed DR-TB

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 4 according to the worldwide TB guidelines and recommendations by the WHO in an effort to cure the patients as well as curbing the spread of the disease. The management and prevention of DR-TB requires cooperation of all those affected, balancing community and individual interests.

1.2 Motivation for Study Many people are daily falling sick from DR-TB and having to confront the scourge of this difficult and complex disease, with devastating and complex effects on those infected. 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. Specific to medical social work is the biopsychosocial approach to practice, which takes into account the entire person in his/her environment (Beder, 2006).

Although it is important that the problem of DR-TB is treated aggressively, through the isolation of patients in a DR-TB hospital, it is vital that the psychosocial and existential issues are addressed as well; ignoring them jeopardizes the management and prevention of DR-TB. Therefore, it becomes difficult to get the required cooperation from patients and those affected, and most particularly the commitment of patients to complete treatment. This may give rise to a number of challenges/problems. As a social worker working in a hospital for DR-TB patients, I have seen patients refusing hospital admission, others wanting to be treated as out-patients, refusing treatment, asking to be discharged from hospital while still infectious or when not responding to treatment after a lengthy hospital stay and treatment (e.g. those with persistent positive culture or treatment failure).Some stop taking treatment voluntarily during hospitalization, because of side effects or feelings of worthlessness and feeling no need of further treatment. Others abscond from the hospital for various personal reasons; it has been reported, for example, that 49 DR-TB patients at Jose Pearson hospital in Port Elizabeth absconded from the hospital during December 2007 to spend Christmas with their families (Opar, 2008). Patients abscond from hospital for other reasons: to attend the funeral of the loved one, to visit a spouse/parent or child in another hospital or to re-apply for a disability grant while still in hospital.

My practice experience suggests that this behaviour is exacerbated by three factors:1) the patients’ medical condition; 2) socioeconomic factors (family support, employment, financial independence,

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 5 educational needs (schooling), lifestyle and death in family); and 3) the patients’ psychological mindset (e.g. questions like who am I, what is going on, what is my life for; feelings of worthlessness; seeing no value of a continued existence and wanting to end it all by committing suicide; withdrawing from cooperation with the health staff and voluntarily stopping or refusing treatment). A small number have committed suicide during hospitalization, some have attempted to commit suicide and others abuse alcohol. All these factors pose devastating and complex challenges for DR-TB patients, and give rise to many existential issues. In reality many patients are faced with overwhelming existential issues which they are unable to understand and address – questions of mortality, purpose and meaning, hope, belonging and identity.

I believe that the existential framework is vital, as different people attach different meanings to their daily life experiences of being hospitalized for DR-TB. An understanding of this framework 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. Most of the studies on DR-TB focus on the medical aspects alone. This study could therefore break new ground for social workers involved in health care and more particularly in the DR-TB field. At the same time it will confirm the existing theory/literature on the existential approach, on the sick role, prolonged illness, long term hospitalization and/or institutionalization.

The study may be replicated in the other DR-TB hospitals in different provinces of South Africa, but not limited to these areas. This will develop a deeper understanding and raise awareness of the complexities and drastic impact on the patients’ existence. This might support the development of proactive social work intervention programmes which could be recognised at national, provincial or regional levels and greatly support DR-TB patients and their families throughout hospitalization without destroying human dignity, reducing the associated psychosocial impact, and making the hospital stay more tolerable.

1.3 Problem Statement and Research Question My premise is that DR-TB patients, who are hospitalized for a long time, experience and confront existential problems which are very painful, with devastating and complex effects on their lives and require adequate and relevant social work care and support. Ignorance and a lack of understanding of an existential theoretical approach might make it difficult for the social worker to handle and understand the existential problems confronting the patients. Social workers might feel inadequate and overwhelmed by this unfamiliar approach to clinical practice. Inadequate knowledge and awareness can be detrimental to both the social work practitioner and the patient, diminishing opportunities to explore, understand and deal effectively with these existential issues, and inhibiting

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 6 or compromising the healing process. In light of this, the core research question of this study is: What is the experience of long term hospitalization like for DR-TB patients?

1.4. Goal and Objectives The goal of this study was to describe the patients’ experience of being hospitalized for a prolonged period due to DR-TB within an existential framework.

The study has the following four objectives, to:

1. Narrate the hospitalization experience of the DR-TB patients.

2. Describe the hospitalization experience in relation to four key existential themes, namely death, freedom, isolation and meaning (Yalom, 1980).

3. Outline the psychosocial impact of long term hospitalization for DR-TB in relation to these existential themes.

4. Expand the knowledge base of social workers regarding the existential issues associated with DR-TB patients who are hospitalized for extended periods.

1.5. Overview of Research Methodology Theoretical Framework. This study sought to understand and describe the intrapersonal experiences of DR-TB patients in a hospital from the existentialist approach, according to four central themes identified by Yalom (1980). The existential framework focuses on the existence of the person in the current environment and the concerns rooted in an individual person’s existence. It seeks to understand the inner world of another person, examining the deepest internal conflicts in the existence of a troubled person. Existentialism aims to help a person understand his/her existence in all its confusing complexity and find meaning in it (Frankl, 1986; Van Deurzen, 2001; Yalom, 1980).

Research Approach. 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.

Exploratory-descriptive qualitative research is appropriate to produce rich, thick data about the participants’ subjective experiences and develop detailed understanding of the phenomenon.

Research Design. A phenomenological research design was used in this study to answer the research question and to meet the goal and the objectives of this study. A phenomenological

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 7 research design was appropriate for this study as it allowed the researcher to describe and reduce the participants’ experiences to a central meaning or essence of experience (De Vos, Strydom, Fouché, & Delport, 2005).

Population. The population for this study was the patient intake at a DR-TB hospital in Gauteng with 266 beds.

Sample. A non-probability sample of three patients with DR-TB, who had been in hospital for at least 12 months or more, were resistant to at least four anti-TB drugs, and had the intellectual and emotional capacity to explore the existential experience of long term hospitalization (LTH) (based on my knowledge of working in this hospital) was selected. The sample was purposive and the number considered sufficient given the phenomenological design of the study.

Data Collection Instrument and Method. Data were collected by conducting in-depth one-to-one unstructured interviews with the participants. An open-ended question was posed to encourage each participant to share his/her experiences of LTH. This propelled the process of entering their private worlds to understand their subjective experiences. Follow up questions were asked to elaborate and clarify, giving a deeper understanding; these varied, depending on the individual experiences. The interviews were audio taped (with the permission of the participants) and transcribed verbatim to capture their experiences.

Data Analysis. De Vos et al.’s (2005) data analysis spiral was used to analyse data. The spiral steps included managing and preparing data for analysis, repeated reading of the transcripts, writing memos of emerging ideas, coding the data and testing emerging ideas against the original data and literature. The theoretical framework, based on the existentialist approach, was used to guide the thematic analysis.

1.6. Limitations of the Study This study is limited by its sampling methodology and sample size. The participants were selected by purposive sampling; no random sampling was used. This may have biased the sample since my selection was based on my knowledge of the patients in the hospital. I presumed that these participants would be in better position, emotionally and intellectually, to discuss and engage in open dialogue about their long term hospitalization.

This study represents the experiences of patients from a single MDR-TB hospital in Gauteng, with a small sample, and participants of the same race. By its nature a small, in-depth phenomenological study cannot be generalised to the population of South African patients with DR-TB and LTH.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 8

Despite these limitations, the study was a good topic for a qualitative, exploratory-descriptive study informed by phenomenology. The approach of this research upheld the measures to ensure that the findings were rigorous and trustworthy.

1.7. Definitions of Concepts Key definitions relevant to this study are as following:

Tuberculosis (TB).Tuberculosis is a disease caused by a bacterium called mycobacterium tuberculosis. It mainly affects the lungs and called pulmonary TB (PTB), but other parts of the body can be affected, for example joints, spine and nervous system and other organs, and it is called extra pulmonary TB (EPTB).Active Pulmonary TB is infectious and spreads easily by coughing, sneezing and talking. Extra pulmonary is virtually uninfectious (Collins, 1991; Harries et al., 2004).

Drug Resistant Tuberculosis (DR-TB).DR-TB is a disease (usually pulmonary) caused by the resistance of TB to the TB drugs/treatment (first line regimen). DR-TB is a man-made problem and usually happens when TB is mismanaged. TB can become drug resistant when, for example, the patient does not complete the course of treatment, health care workers prescribe the wrong dosage or regimen and/or treat for a shorter duration than recommended by the department of health, and there are problems with management of drug supply, such as shortage or breakage in the supply of TB drugs (Harries et al., 2004; Ogunbanjo & Savva, 2011).

DR-TB is common in people who do not take TB medication regularly as prescribed, resulting inpatient adherence problems or defaulting treatment; develop TB again after being treated and cured before relapsing; come from areas where DR-TB is common (where there is a high prevalence of the disease); and have been in contact with someone with diagnosed or undiagnosed DR-TB. A relapse means a TB disease starting again after a TB patient was declared cured or treatment completed, and adherence to treatment means the patient taking the medicines as directed (Harries et al., 2004). DR-TB is categorised as multidrug resistant tuberculosis (MDR-TB) or extensively drug resistant tuberculosis (XDR-TB).

Multidrug resistant Tuberculosis (MDR-TB).MDR-TB is the TB where the mycobacterium (TB germ) is resistant to treatment by Isoniazid and Rifampicin, which are the two primary and potent TB drugs (Ogunbanjo & Savva, 2011).

Extensively drug resistant tuberculosis (XDR-TB).XDR-TB is defined as the TB that is resistant to Isoniazid and Rifampicin, plus to fluoroquinolones (antibiotics, in tablet or injection form),

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 9 which are major and backbone TB drugs, (e.g. ofloxacin) and one or more injectable anti-TB drugs, e.g. kanamycin, amikacin, and capreomycin (Jain & Mondal, 2008; Ogunbanjo & Savva, 2011).

Smear. A sputum sample is spread thinly on a glass slide, treated with a special stain and examined under a microscope to reveal the TB organism (mycobacterium). This process might take up to 4 hours, in other instances a few days (Collins, 1991, p. 12).

Sputum smear positive PTB. Sputum smear positive indicates the presence of high bacterial load TB organism (mycobacterium) on sputum microscopy (Collins, 1991; Harries et al., 2004). According to Collins (1991, p. 11) the sputum smear PTB indicates the stages of PTB or can help to classify PTB, for instance, smear negative (-) and culture negative indicates minimal TB, smear positive (+) and culture 2positive (++) indicates moderate TB, and smear 2positive (++) and culture 3positive (+++) indicates advanced TB.

Sputum smear negative PTB. Sputum smear negative means the absence of mycobacterium on sputum microscopy (Harries et al., 2004).

Culture. Culture is when the TB organism is cultured, that is, grown in special media like TB culture facilities or laboratories, encouraging their growth. This process takes time, often between 6-8 weeks, because the mycobacterium TB is a slow-growing organism(Collins, 1991, p. 13; Harries et al., 2004, p. 57).

Culture negative. Culture negative means that there is no growth of the TB organism and absence of TB in the body.

Pass out: A pass out is an internal hospital system supporting patients and allowing them to maintain contact with the outside world, especially with the family when an emergency arises. The sputa results determine the form of the pass out.

Regimen. A drug, or several drugs, given in certain doses for a stated duration (Harries et al., 2004, p. 18).

Ultimate concerns (including dynamic conflict).The Existential paradigm/position emphasizes a conflict flowing from the individual’s confrontation with the givens of existence. According to Yalom (1980, p. 5)“the givens of existence are certain ultimate concerns and experiences that are an inescapable part of human existence”. Yalom (1980) identifies four ultimate concerns: death, freedom, isolation and meaninglessness. The individual’s confrontation with these constitutes the

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 10 content of the existential dynamic conflict (Yalom, 1980, p. 8). A confrontation with such an experience collapses some of the fundamental meaning-providing schemas for one’s existence

1.8. Chapter Outline Chapter 1.Introduction.This is an introduction and orientation, outlining the introduction to, background of and motivation for the study; the problem statement, goal and objectives; an overview of the research design and methodology; limitations of the study; and definitions of key concepts.

Chapter 2.Literature review. In chapter 2, the literature related to the investigated phenomenon, and including Yalom’s existential theory is reviewed, providing the theoretical framework of the study.

Chapter 3.Methodology. The chapter on methodology focuses on and illustrates the research methodology used. This consists of the research question, goal and objectives, sampling strategy, research design, data collection and analysis methods. Ethical issues are also discussed.

Chapter 4.Findings and discussion. Chapter 4 presents a detailed report of the research findings emerging from the data analysis in the light of the study’s theoretical framework.

Chapter5.Summaryand recommendations. This final chapter summarises the key findings of the study, and provides recommendations and conclusions based on the data.

1.9. Conclusion In this chapter, the topic of the study was introduced, and an outline provided of the research in terms of research motivation, research question, goal and objectives, as well as the brief outline of research method. Definitions of key concepts relevant to this study were provided.

This is a valuable study which can lead the researcher into the hidden areas in the lives of patients and provide full descriptions of the hospitalization experience. It can also give social work practitioners in this specialised area a better and deeper understanding, knowledge and skills to deal with issues raised by hospitalized DR-TB patients, and empower them to deal effectively with them, providing vital support to patients.

The following chapter focuses on literature review related to the research question, goal and objectives, and providing the theoretical framework.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 11

Chapter 2: Literature Review

2.1. Introduction The previous chapter provided an introduction to the study, outlining background and motivation for the study, problem statement, goal and objectives, the research design, overview of research methodology, limitations of the study and the definitions of the key concepts to the study.

In this chapter, literature related to the investigated phenomenon is reviewed, providing the theoretical framework of the study. Patients are often haunted by existential questions when traumatic and irreversible event happens. Therefore, the purpose of this chapter is to discuss Yalom’s existential theory. Yalom’s framework was selected as it is helpful to make sense of the experience of DR-TB patients who are hospitalized for a long time. He provides both a philosophy of existentialism and a clinical practice framework based on that philosophy, making it relevant to this clinical social work study.

The literature review then describes the historical beginnings of existential philosophy, and showing how in the end it positively influenced clinical practice, helping to explore and understand the individual person’s existential concerns. The literature review further provides the definition of existentialism, outlines what existentialism is, providing a framework to understand the individuals’ problems rooted in existential concerns, how they manifest in the process of clinical practice, and how the social worker can effectively deal with this to assist the person to be aware of the internal conflicts and achieve change.

The chapter covers the literature review of TB and DR-TB. The relationship between existentialism and LTH for DR-TB is briefly outlined, illustrating that the effects of prolonged hospitalization engender existential concerns in patients. The uncertainty compounds these existential concerns. It is important to understand the existential concerns and their impact on patients.

2.2. TB and DR-TB Epidemiology of TB. Tuberculosis (TB) has been prevalent in many societies over a long period with significant effects (Coovadia & Benatar, 1991). It was first discovered in 1882 by Robert Koch (Collins, 1991; Coovadia & Benatar, 1991; Meya & McAdam, 2007). Despite its long discovery and the initiation of effective therapy eight years after its discovery, TB remains a global epidemic and the major cause of death in the world, especially across poor and/or developing countries (Collins, 1991; Craig, 2007; Naidoo & Douglas, 2007; Vega et al., 2004; Wilson, 2009). TB causes about two million deaths globally each year (Ginsberg & Spigelman, 2007; Meya &McAdam, An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 12

2007; Naidoo & Douglas, 2007). It is estimated that about nine million of new TB cases occur yearly in the world (Ginsberg & Spigelman, 2007; Wilson, 2009), but its prevalence/occurrence varies in different regions and countries. Approximately 600 new cases are reported per 100 000 population annually in South Africa (Moller & Erstad, 2007, p. 104; Naidoo & Douglas, 2007, p. 8), an incidence that the world health organization (WHO) classifies as critical.

According to Craig et al. (2007, p. 419) the reasons for the increasing global TB burden include: increasing travel and migration, poverty, HIV infection, poor and overcrowded housing, homelessness, the failure of TB control in institutionalized populations and life styles (e.g. substance abuse) that compromise health status. The WHO reported that TB is of highest burden in 22 countries in the world on the continents of Asia, Africa, Eastern Europe and South America (Ginsberg & Spigelman, 2007, p. 294; Naidoo & Douglas, 2007, p. 8; Varma et al., 2007, p. 586). Ogunbanjo and Savva (2011, p. 5) state that South Africa is the world’s third highest burden TB country lagging behind China and India. The high prevalence of TB in South Africa is an enormous concern and a challenge for the country. Furthermore, the high incidence of TB globally is a huge public threat. The WHO has announced TB a critical public health problem globally, requiring urgent effective and enhanced control activities (Ginsberg & Spigelman, 2007, p. 290; Moller & Erstad, 2007, p. 104).

What is TB? Tuberculosis is a disease caused by a bacterium (TB germ) called mycobacterium tuberculosis. It enters the body from the air we inhale (and damages our lungs). It affects the lungs mainly, but other parts of the body can also be affected (e.g. joints, spine, nervous system and other organs) (Collins, 1991, pp. 3 & 27). TB is classified into two categories, that is, TB of the lung or Pulmonary TB (PTB), and TB occurring elsewhere in the body or extrapulmonary TB (EPTB).

TB Transmission. TB is mostly transmitted when a person with active pulmonary TB coughs, producing small droplets (infectious droplet nuclei) that contain TB bacteria. TB is also transmitted by tiny infectious droplets which are aerosolised by spitting, talking or sneezing. Droplet nuclei can float in the air for long periods (Harries, Maher, & Graham, 2004, p. 23). Anyone who inhales the air carrying these droplets could get infected.

Risky situations that increase the spread of TB disease include overcrowding, poor ventilation, person with lung cavities or being in a confined/enclosed space with a TB patient who is coughing (Craig et al., 2007). The considerable exposure to droplet nuclei is a great factor influencing an individual’s risk of TB infection. An individual’s immunity to infection is also an important factor. The more prolonged contact with the infectious droplets in the air the higher is the risk of being infected. The most infectious are individuals with smear positive TB. Those who are smear negative

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 13 and culture negative are less infectious. Those with a negative culture and extra pulmonary TB are not infectious. For TB to be transmitted there must be someone who is infected with TB of the lungs and who is not yet on TB treatment. Pulmonary TB is infectious and spreads easily (Collins, 1991; Harries et al., 2004).

People who are more prone to develop (active) TB are those who are immune compromised (for example, people with HIV infection or AIDS, diabetes or chronic diseases like cancer), people on certain immune suppressive medications (such as steroids or cancer chemotherapy), people working in mines, the elderly, children, and those who are malnourished or severely underweight (Collins, 1991, pp. 4 & 39). Therefore TB contacts (that is, those who have a very close contact and a reasonably prolonged indoor exposure to the TB patient who is not on treatment) must be screened and treated accordingly (Collins, 1991, p.10).

TB Infection and Active TB. Ginsberg and Spigelman (2007, p. 290) state that “two billion people worldwide are estimated to be infected with mycobacterium tuberculosis, that causes TB, although less than one percent of these have active TB at any given time. The rest are referred as having latent TB Infection (LTBI).” Therefore, there is a difference between TB infection and active TB disease. Most of the time, TB bacteria will go latent inside the lungs. In most people it will remain dormant for many years probably life time, and these people will not have any TB symptoms and are not infectious. These dormant bacteria are kept in control by the body’s defences and do not cause disease. Thus the majority of people are latent TB carriers. Latent TB infection progresses to active TB Disease in small number of people soon after the infection, usually within two years since the infection (Collins, 1991, p. 4 & 6; Harries et al., 2004, pp. 23 & 24). Harries et al. (2004, p. 23 ) state that the most commonly recorded triggers includes various physical and emotional stresses, and weakening of the immune system, especially by HIV Infection being the most important one.

Symptoms of TB. TB symptoms include persistent cough for more than two weeks, loss of appetite, loss of weight, night sweats and prolonged fever, tiredness and weakness (Collins, 1991; Harries et al., 2004). TB is diagnosed by asking a person with TB symptoms when visiting the clinic/hospital to cough up sputum, which will be sent to a laboratory. The sputum will be examined under the microscope and the TB germs will be looked for. A person diagnosed with TB has to be started on treatment immediately. Treatment will include a combination of tablets and injections. The period of treatment is usually six months, but sometimes longer up to 9 months.

TB Treatment. The TB drug therapy has been around for more than 50 years and is perceived effective (Harries et al., 2004, p. 111; Vega et al., 2007, p. 749). However, there are challenges surrounding the treatment and control of TB globally, with still high incidence and major threat to

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 14 life. Hence the TB and global health stakeholders indicated a need for development of improved and more effective TB drug treatments against sensitive and resistant strains, and as a result there are some products in clinical development (Ginsberg & Spigelman, 2007, p. 290).

Harries et al. (2004, p. 111) states that “the aim of anti-TB drug treatment is to cure the patient of TB, to prevent death from active TB or its late effects, to prevent TB relapse or recurrent disease, development of drug resistance and to decrease TB transmission to others. Properly applied anti-TB drug treatment through a well managed TB programme will achieve these aims.”

WHO recommends the standardized TB treatment regimens (Harries et al., 2004, p. 111). The treatment and management of susceptible TB involves first line anti-TB drugs. Standard treatment may include Isoniazid, Rifampicin, Ethambutol, Pyrazinamide, Streptomycin (injections). The efficacy of TB drugs differs from drug to drug; others are highly effective whereas others are less effective. Isoniazid and Rifampicin are most effective in preventing resistance to other drugs (Harries et al., 2004, p.111).

Harries et al. (2004, pp.111 & 114) state that “TB regimens have an initial (intensive) phase of 2months and a continuation phase, lasting 4-6months. The initial phase is designed for the rapid killing of actively growing bacilli and the killing of semi dormant bacilli. The continuation phase eliminates the bacilli that are still multiplying and reduces failures and relapses.” Harries et al. (2004, p. 113) continue, “Different anti-TB drugs act against different groups of bacilli.”

Side Effects of Anti-TB Drugs. Although the current TB treatment is perceived effective and able to cure TB, the problematic issue is attributed to associated side effects among other things. Harries et al. (2004, p. 129) indicate that “Most TB patients complete their treatment without any significant drug side effects. However, few patients do develop side effects. So clinical monitoring of all TB patients for side effects is important during TB treatment. Health personnel are responsible by monitoring patients for drug side effects by being aware of such symptoms, by teaching patients and their family how to recognise symptoms of common side effects and to report if patients develop such symptoms, and also to ask specifically about these symptoms when they see all patients during monthly treatment”. Side effects are carefully managed. Harries et al. (2004, pp. 129 & 130) further state that when the patient develops minor side-effects, the health personnel explain the situation and encourage the patient to continue treatment, along with relevant clinical intervention, and in case of a major adverse reaction, the suspected responsible drugs are stopped all at once.The side effects of anti-TB drugs include: Peripheral neuropathy, Sleepiness/lethargy, anorexia, nausea, vomiting, abdominal pain, diarrhoea, joint pains/ bone pains, skin reactions/skin rash acute psychosis, malaise, renal failure, headache, dizziness, auditory and vestibular nerve damage or

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 15 hearing loss or disturbed hearing, visual disturbance (poor vision and colour perception)-optic disturbance may lead to blindness(Collins, 1991, pp. 19-21; Harries et al., 2004, p. 130):

Introduction to DR-TB. The emergence of DR-TB globally constitutes a major global health problem, in addition to the high TB burden (Vega et al., 2004, p.749). DR-TB is also rife in South Africa, with Kwa-Zulu Natal, Free-state, and Eastern Cape experiencing the highest numbers (Meullemans, Rigouts, & Van Rensburg, 2005). South Africa is ranked fifth highest DR-TB high burden country (Ogunbanjo & Savva, 2011, p. 5). Wilson (2009, p. 434) states , “In South Africa, DR-TB resistance is driven by extremely poor rates of treatment completion, as well as by widespread lack of routine testing to determine TB drug sensitivity, two common problems in many developing countries.”

By definition, DR-TB is a disease, usually pulmonary, caused by mycobacterium tuberculosis strains resistant to one or more anti-TB drugs (Ogunbanjo & Savva, 2011, p. 4).DR-TB is a man- made problem and occurs when TB is mismanaged. TB can become drug resistant when, for example, the patient does not complete the course of treatment; health care workers prescribe the wrong dosage; treatment is too short; the regimen is incorrect; and there are problems or shortages in the supply of drugs (Harries et al., 2004; Ogunbanjo & Savva, 2011).

DR-TB is common in people who do not take TB medication regularly as prescribed, resulting in patient adherence problems or defaulting treatment; develop TB again after being treated and cured before relapsing; come from areas where DR-TB is common (where there is a high prevalence of the disease); and have been in contact with someone with diagnosed or undiagnosed DR-TB. A relapse means a TB disease starting again after a TB patient was declared cured or treatment completed, and adherence to treatment means the patient taking the medicines as directed (Harries et al., 2004). There are two forms of DR-TB, multidrug resistant tuberculosis (MDR-TB) or extensively drug resistant tuberculosis (XDR-TB).

Symptoms and Diagnosis of DR-TB. The symptoms of DR-TB are similar to those of drug sensitive TB. DR-TB is diagnosed through physical examination, radiology (that is by conducting a

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 16 chest X-Ray) and bacteriology (that is by collecting sputum from patients for sputum smear and cultures and sending to the laboratory for testing). The drug sensitivity test (DST) is done to determine the resistance pattern of the TB disease, and thereafter prescribing the correct regimen to the patient. Therefore the DR-TB regimen depends on the resistance pattern (Ogunbanjo & Savva, 2011).

DR-TB Contacts. It is recommended that the close contacts of patients with confirmed DR-TB must be screened and tested for DR-TB. Screened individuals who do not have DR-TB must be routinely screened for DR-TB six monthly (Ogunbanjo & Savva, 2011, p.1). The purpose of this intervention is to curb the spread of MDR/XDR-TB in communities by diagnosing/detecting and treating the close contacts of DR-TB at an early stage. This kind of intervention is put in place as some studies have revealed that close contacts of DR-TB contacts often have MDR-TB/XDR-TB (Ogunbanjo & Savva, 2011, p. 103). Ogunbanjo and Savva (2011, p. 103) define close contacts as “persons living in the same household, or who spend many hours a day together with the patient in the same indoor space”.

Prevalence and Definitions of MDR-TB/XDR TB. MDR-TB is a global health problem with a rapid spread both in new and previously treated cases (Jain & Mondal, 2008, p. 145). The WHO has estimated that in 2004 there were about 425 000 new cases with the highest rates in the former Soviet union and China, and 181 403 occurred in patients who were previously exposed to First Line TB drugs (Ginsberg & Spigelman, 2007, p. 290; Jain & Mondal, 2008, p. 146). Wilson (2009, p. 433) also states that out of nine million new TB cases reported annually, 490 000 are MDR-TB. MDR-TB plays a major role in death. The WHO estimates that “each patient who does not receive effective MDR-TB treatment will, every year, infect 10-15 people with highly drug resistant strains” (Acha et al., 2007, p.405). MDR-TB is also identified as a problematic in South Africa. Ogunbanjo and Savva (2011, p. 5) state that a steady increase has been observed since 2006, with 7 386 MDR-TB cases being diagnosed. MDR-TB has been reported in all provinces of South Africa. By definition MDR-TB is resistance to Rifampicin and Isoniazid (the most powerful anti- TB drugs), with or without resistance to other first line anti-TB drugs (Ogunbanjo & Savva, 2011, pp. 1 & 4).

XDR-TB is a global public threat. XDR-TB was recognised globally in 2006 (Wilson, 2009, p. 433). XDR-TB has been reported in 50 countries according to Wilson (2009, p. 436). Furthermore, the WHO and the US Centers for Disease Control and (CDC) reported XDR-TB strains in all regions of the world. XDR-TB was found mostly in former Soviet Union and Asia (Ginsberg & Spigelman, 2007, p. 290). However, the burden of XDR-TB disease differs from country to country.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 17

Wilson (2009, p. 433) states that an estimation of new 40 000 XDR-TB cases occur annually, and with approximately half of these cases are fatal.

XDR-TB is also a public concern in South Africa, and Wilson (2009, p. 434) states that South Africa now has the world’s largest incidence of XDR-TB. According to Singh, Upshur and Padayatchi (2007, p. 19), the WHO announced on 1 September 2006 that XDR-TB was detected in South Africa in 2006, in Kwa-Zulu Natal Province in an area called Tugela Ferry. 53 cases of XDR- TB were detected out of 544 patients studied in the area. With this outbreak of XDR-TB in Kwa- Zulu Natal, 52 of 53 patients died (Moller & Erstad, 2007, p. 114; Singh, Upshur, & Padayatchi, 2007, p.19). XDR-TB cases have ever since been reported in all South African provinces (Moller & Erstad, 2007, p. 114). By 1 December 2006, South Africa has reported more than 300 cases of XDR-TB (Singh, Upshur, & Padayatchi, 2007, p. 23).

XDR-TB is defined as resistance to rifampicin, isoniazid, any fluoroquinolones and one or more of the following injectables: kanamycin, amikacin or capreomycin (Ginsberg & Spigelman, 2007, p.290; Jain & Mondal, 2008, p.146; Ogunbanjo & Savva, 2011, pp. 1 & 4; Singh, Upshur, & Padayachi, 2007, p. 19).

Treatment for DR-TB. DR-TB is highly infectious and difficult to treat, with less chance of cure, more complications of the disease and fatal. The treatment for DR-TB seeks to cure disease, curb the spread of disease and to prevent the emergence of increased drug resistance (Acha et al., 2007). The DR-TB drug regimens are complex and more toxic than the 1st anti tuberculosis regimen, and remain largely unchanged since 1960’s (Ginsberg, 2007, p. 290; Wilson, 2009, p. 433). Hence, the treatment and management of DR-TB requires a prolonged therapy (18-24 months), requiring hospitalization, which is often involuntary, with indefinite period. In South Africa, hospitalization can be for minimum periods varying from 4-6 months, but it can be more lasting up to 24 months depending on the person’s response to DR-TB treatment. Thus the length of stay depends on how soon the patient get a negative culture result, something which cannot be predicted how long it will take.

The treatment of DR-TB involves mainly the use of second line drugs. Most often these drugs are antibiotics (i.e. they kill the bacteria, meaning they are bactericidal) and others are bacteriostatic, meaning that they stop the TB bacteria from growing (Harries et al., 2004; Ogunbanjo & Savva, 2011). Patients can only stop their DR-TB treatment only when advised by their doctor. Continual monitoring of patients discharged from DR-TB treatment will continue for two to three years at the DR-TB hospital/unit outpatient clinic. Patients will have to visit the hospital six monthly, and have chest X-Rays taken which are then examined by the doctor (Ogunbanjo & Savva, 2011).

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 18

The standardised approach to MDR/XDR TB treatment is recommended for all newly diagnosed MDR-TB or XDR-TB patients. The standardised MDR-TB regimen consists of an intensive phase also called the injectable phase, of at least 6 months with five drugs which are a combination of oral treatment (tablets) and injectables, followed by a continuation phase of 18 months oral treatment with four drugs. Treatment should be given at least six days per week (Ogunbanjo & Savva 2011). According to Ogunbanjo and Savva (2011, p. 1), the use of multiple drugs is important to prevent further development of resistance. Moreover, counselling and psychosocial support needs to be provided throughout treatment. Reinforcement of ongoing adherence must also be provided to patients.

The MDR-TB treatment is expensive, costing 100 times more than drug sensitive TB (Acha et al, 2007; Wilson, 2009). The treatment of patients with MDR-TB involves the standardised regimen consisting of at least 6 months intensive phase with kanamycin/amikacin, moxifloxacin, ethionamide, pyrazinamide and terizidone/cycloserine or ethambutol, followed by 18 months of continuation phase after culture conversion with moxifloxacin, ethionamide, terizidone and pyrazinamide (Ogunbanjo & Savva, 2011, pp. 1 & 44). Low treatment success is reported in MDR- TB.

XDR-TB treatment requires an individualised approach in patients who were previously treated with second line anti-TB drugs. Individualised treatment is given based on the history of anti-TB drugs previously received by the patient and the results of the drug susceptibility testing (DST), (Ogunbanjo & Savva, 2011, pp. 1 & 52). XDR-TB patients are treated with at least 4 to seven drugs expected to be effective for 18 – 24 months. However, Ogunbanjo and Savva (2011, p. 52) state that “currently there is no international consensus on the optimum duration of XDR-TB treatment; therefore the same principles as for MDR-TB treatment apply, but clinical assessment of individual patients is required to decide on the termination of XDR-TB treatment”. The recommended standardised regimen for XDR-TB consists of at least 6 months intensive phase with capreomycin, moxifloxacin, ethionamide, terizidone, pyrazinamide, P-aminosalicylic acid and clofazimine, followed by 18 months continuation phase with moxifloxacin,ethhionamide terizidone, pyrazinamide, P-aminosalicylic acid or clofazimine, but it may be modified based on DST results (Ogunbanjo & Savva 2011, p. 52). XDR-TB has less chance of cure and a high risk for premature death (Ogunbanjo & Savva, 2011, p. 52).

Treatment Outcomes. The different types of treatment outcomes for TB/DR-TB include treatment completed/cure, relapse, default, failure, lost during follow-up, transfer out and death (Harries et al., 2004, p. 123). By definition, successful treatment outcomes refer to patients who completed

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 19 treatment and are cured (Harries et al., 2004, p. 123). Unsuccessful treatment outcomes includes relapse, default, lost during follow-up and death. Patients may be referred /considered for surgery in special cases/situations (for instance where the patient relapses after proper treatment course and has been adherent or where the patient presents with persistent positive sputum cultures without relevant x-ray and clinical improvements after being on six months of adequate treatment and adherent (Ogunbanjo & Savva, 2011, p. 57). However these two are not sole indicators for surgery referral; a number of medical factors/issues also play a role and are carefully considered by a relevant team of experts.

Adverse Effects of DR-TB (MDR/XDR TB) Treatment. Second line drugs used to treat MDR/XDR TB have more side effects than the first line drugs (Ginsberg & Spigelman, 2007; Jain & Mondal, 2008; Ogunbanjo & Savva, 2011). The use of multiple drugs is important to prevent the development of additional resistance, but treatment is complicated by the adverse effects, in addition to the limited choice of the second line drugs (Ogunbanjo & Savva, 2011, p. 43). Ogunbanjo and Savva (2011, p. 59) state that “the treatment side effects can be classified under the categories: minor side effects, toxic reactions, hypersensitivity reactions, idiosyncratic reactions and other reactions”. The adverse drug reactions are usually temporary and reversible, but occasionally permanent. Common side effects may be reported, such as nausea, vomiting, diarrhoea, headache, kidney problems, liver problems/toxicity, peripheral nerve problems, visual concerns (impaired vision), hearing loss or imbalance, skin reactions and psychiatric symptoms (such as toxic psychosis, depression, suicidal ideation, anxiety). These side effects are temporary and reversible, while visual problems are reversible up to a certain point, and hearing loss is usually permanent (Acha et al., 2007, p. 405; Vega et al., 2004, p. 750).

Prompt and aggressive management of all (whether mild or serious/dangerous) adverse drug reactions (ADRs) is important, as its absence can result in mortality, permanent disability and patient non-adherence. In addition, patients may develop anxiety about the treatment side effect if they do not understand what is happening and this has the potential to add on the severity of the adverse effect (Ogunbanjo & Savva, 2011, p. 61).

Some treatment side effects present soon after treatment is initiated while others manifest at the later stage. However it is often difficult to determine which drug is the source of adverse drug reaction since DR-TB patients receive multiple drugs. Although the majority of side effects are easy to recognise and most patients can report on these voluntarily, close monitoring of patients for early detection of adverse reactions and ensuring timely and proper management is important. The strategies that are followed in aggressively managing the adverse reactions include:

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 20

1. “continuing treatment regimen in case they are mild and in addition educating, encouraging and providing support to the patient to tolerate the effects until they subside, as many adverse drug reactions disappear with time;

2. Reducing the dosage of the suspected drug(s) until the adverse reactions subsides, or to reduce the dosage of each drug where it is not clear which drug(s) is the source of the adverse effects;

3. In case of serious effects or where reduced dosage does not alleviate the ADRs, it may be necessary to remove the drug from the regimen or to replace the culprit drug with another drug” (Ogunbanjo & Savva, 2011, pp. 61-62).

Discontinuation of drug or treatment interruption may affect the treatment efficacy (Ogunbanjo & Savva, 2011, p. 62; Vega et al., 2004, pp. 749-750). Proper management of adverse effects begins with pre-treatment education to patients where they will be informed in detail about potential side effects and when to report to the health care provider. Such management and monitoring of ADRs continues even during treatment course. It is recommended that during the intensive phase, the patients must be interviewed weekly, and monthly during continuation phase about the adverse reactions to treatment and this recorded according to protocol. However it is important that treatment supervisors (health care providers) enquire about the side effects during every encounter with patients to ensure that side effects are detected at early (Ogunbanjo & Savva, 2011, p. 60).

Hospitalisation for DR-TB. DR-TB is highly infectious and difficult to treat. Therefore the management of DR-TB (MDR-TB/XDR-TB) requires the isolation in a dedicated DR-TB hospital/unit (with proper isolation and infection control measures) of confirmed patients with DR- TB for treatment and monitoring by experts. The aim is to contain the infectiousness of the disease in communities, to protect lives by preventing infection of patients close contacts and also prevent the development of resistant strains of TB (Ogunbanjo & Savva, 2011; Opar, 2008; Singh, Upshur, & Padayatchi, 2007).

Fair processes must be followed when isolating a patient with DR-TB to hospital for treatment as allowed by the legislative framework of respective countries. This includes considering and respecting human rights and dignity, and ensuring proper education and obtaining consent. However, in most instances, confirmed MDR/XDR-TB patients may be forced to involuntary quarantine (to hospital) for DR-TB treatment, for indefinite time until sputum conversion. The use of involuntary confinement for treatment carries human rights and ethical issues and should be carried out sensibly. Furthermore, this mandatory isolation waives the rights of the patient over

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 21 protecting the community at large, limits certain rights of the patient including freedom of choice and movement, as guided by relevant legislatures such as public health ethics and international health regulations of WHO, and the Siracusa Principles on the Limitation and Derogation of Provisions in the International Covenant on civil and political rights (Ogunbanjo & Savva, 2011, p. 10; Opar, 2008, p. 109; Singh, Upshur, & Padayatchi, 2007, p. 23).

Opar (2008, p. 109) states that “the use of forced detention has been a practice for many years to control the spread of infectious diseases such as TB, and including smallpox and severe respiratory syndrome. It is thus anticipated that this approach will be a continuous practice for many years to come”. Involuntary hospital confinement has been used in New York during the 1980’s to contain the TB epidemic that hit the city, and it proved to work (Wilson, 2009, p. 434). Nevertheless, this approach is complex with many challenges. Such challenges are reflected, among others, DR-TB patients absconding from hospital due to personal and psychosocial problems after being confined to hospital for a long time. According to Opar (2008), 49 DR-TB patients fled from Jose Pearson Hospital in Port Elizabeth, South Africa.

In South Africa, the management of DR-TB is done in dedicated MDR-TB units. The use of forced isolation is also implemented in South Africa for treatment and management of DR-TB, and this is done according to the relevant legislative framework and the recommended guidelines of the WHO regarding the management of DR-TB. Opar (2008, p. 109) says that although the mandatory isolation is needed, it is stated that its success and effectiveness is determined by number of factors. Therefore, there is an urgent need to work on confinement planning to improve and optimize this control measure. Proper education to healthcare staff as well as to patients and significant others on legal issues around the management of DR-TB is essential to reduce the challenges associated with treatment and management of DR-TB, and enhancing patients understanding which in turn can increase treatment adherence and social wellbeing.

In conclusion, Although there are many legal issues surrounding the management of DR-TB, especially with regard to the use of mandatory/forced isolation, it is stated that in public health crises such as the widespread of DR-TB, the interests of public health must prevail over the rights of the individual, although reasonable attempts must be made to accommodate the interests of patients in a sensitive and humane way (Singh, Upshur, & Padayachi, 2007, p. 24). The management and prevention of DR-TB requires cooperation of all those affected, balancing community and individual interests.

Psychosocial Experience of TB/DR-TB. For individual TB patients, loss of work, disruption of family structures and daily activities are the negative consequences of the hospital stay and/or long

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 22 treatment. In the case of DR-TB the impact is severe due to prolonged hospitalization. Patients experience many psychosocial and economic problems, and find difficult to cope due to their disease and forced patient role (Vega et al., 2004, p. 750). The treatment for DR-TB is long (generally 18-24 months), and requires long-term hospitalization, which is often involuntary, for periods from 6 to 24 months, depending on sputum conversion (Acha et al., 2007; Ginsberg & Spigelman, 2007; Wilson, 2009). Hospitalization involves complete withdrawal of patients from their regular social environment, and including occupied roles. Most patients worry about their situations - they may feel guilty, angry, depressed, and anxious, blame themselves, and be in denial or acceptance (Acha et al., 2007; Vega et al., 2004). Their psychosocial well-being is affected, compromising their quality of life. Furthermore, the presence of the varying stresses (emotional, social, economic and psychological) can distract the patients focus and interest in TB/DR-TB treatment and hospitalization (Acha et al., 2007; Craig et al., 2007; Vega et al., 2004).

The disease effects on the persons strength and ability to work or to continue working precipitates the patients’ psychosocial challenges related to DR-TB (Wilson, 2009). DR-TB can cause severe damage to the patients lung, resulting in weakened power/strength to perform normal activities, and resulting in accumulated losses (for instance, unable to work or fulfil social roles, forced to give up or postpone important goals or activities including education, depend on others, lose family members to disease, and concomitant poverty (Acha et al., 2007, pp. 405 & 412; Vega et al., 2004, p.750). These forms of stresses require constant psycho-emotional support at varying stages of the disease, treatment and hospitalization. The study in Peru, Lima, indicates that such intervention proves successful in supporting and helping patients to cope with the psychosocial effects of the life threatening infectious disease and hospitalization (Acha et al., 2007). Socio-economic support to TB patients is emphasized and essential to improve psychosocial well-being and quality of life. In line with this, Singh et al. (2007, p. 20) have complimented the social welfare of the South African government for assisting TB patients during illness period. Conversely, the South African social welfare system is criticised for existent gaps in the current government policy that leaves the TB patients without financial means despite socio economic difficulties patients face due to TB disease and long hospital stay. The current government policy (social assistance act) stipulates that patients hospitalized at the state expense, lose their benefits for the duration of hospitalization. Therefore DR-TB patients face the prospect of having their welfare benefits (disability grant) being suspended for the period of hospitalization which could last for 18-24 months (Singh etal., 2007, pp. 20-21). It is often devastating for TB patients to lose their welfare benefits, especially when the individual has no income and/or alternative way to compensate for loss of earnings and to help oneself and family in the faced situation. Such experience is challenging and frustrating for the patient, the patient may

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 23 feel useless. Lack of social support can lead to patients abandoning or interrupting treatment (Craig et al., 2007). Individual patients have different social needs, and may want to abandon treatment or leave the hospital prematurely. Ogunbanjo and Savva (2011, p. 11) state that a number of patient management related challenges are encountered in treating DR-TB; DR-TB patients asking for discharge from the hospital whilst still infectious is mentioned as one of the challenges. Socio- economic factors are seen as contributing to these challenges (Ogunbanjo & Savva, 2011, p. 93). Thus social support to patients is essential, coupled with ongoing education, counselling and emotional support.

TB/DR-TB remains a complex disease that severely interrupts the individuals’ life and bringing about many losses and pain. Furthermore, it can make the present problems of patients worse, perpetuating poverty and putting a further strain on them and their families (Vega et. al., 2007). Apart from the socio-economic difficulties faced by the DR-TB patients, psychological burden of living with prolonged, life threatening disease and fear of treatment failing threatens their psychosocial well-being (Acha et al., 2007, pp. 406 & 412; Vega et al., 2004, p. 750). In such case, the patients may struggle to maintain hope and may present with depressive symptoms (Acha et al., 2007, p. 406).

Vega et al. (2004, p. 750) state that DR-TB patients experience psychiatric complications, which are not related to treatment side effects, and that psychosocial factors contribute to such psychiatric complications during DR-TB treatment. The psycho-emotional features associated with DR-TB include anxiety or psychosis depression, and suicidal ideation (Vega et al., 2004, p. 750). Therefore, comprehensive management of psychosocial factors associated with DR-TB is essential (Vega et al., 2003, p. 751). In conclusion, it is evident that DR-TB patients varying psychosocial problems, which interrupts their lives severely, and causing many complications. Therefore, intensive psychosocial support is essential for DR-TB patients during the treatment and management of MDR/XDR-TB.

Stigma Associated with TB. TB is still a stigmatised disease and several studies confirm (Karim, Chowdhury, Islam, & Weiss, 2007, p. 139; Meya & McAdam, 2007, p. 309; Moller & Erstad 2007, pp.103 & 104). Karim et al. (2007) further state that TB stigma can be crosscutting and gender specific. Both factors needs to be fully assessed and understood to reduce unpleasant effects of TB related stigma. The stigma associated with TB seems to be high and problematic despite public health awareness information that it is curable if diagnosed in time and also if the prescribed treatment is completed. Nowadays TB is also stigmatised as a marker of HIV/AIDS (Moller & Erstad, 2007, p. 103).

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 24

Stigma is a social problem with complex social process, influenced by socialization and human judgements. Often a person is denied full social acceptance (Karim et al., 2007, p. 140; Moller & Erstad, 2007, pp. 106-107). By definition, TB stigmatization is the negative things people believe about TB and TB patients to socially isolate people having TB (Karim et al, 2007, p. 140; Moller & Erstad, 2007, p. 107). Moller and Erstad (2007, p. 107) further state that that “Discrimination (or enacted stigma) refers to what people do to unfairly discriminate people infected with TB. Such discrimination result from social prejudices and fear of infection. Vega et al. (2004, p. 750) and Karim et al. (2007, p. 149) agree that stigma arises because of fear associated with risk if infection People’s reactions and attitude stereotype and stigmatize both the disease and the person (Charmaz, 2008). Stigma can contribute to psychosocial problems and emotional suffering (Karim et al., 2007, p. 139). Stereotyping harms and isolates patients.

A study conducted in rural Bangladesh on stigma, gender and their impact on individuals (Karim et al., 2007) shows the different forms of TB related stigma, intensity and impact on patients. Features of TB related stigma may include: patients feeling ashamed, embarrassed, depressed, avoided, and rejected, self-guilt and blame, fear of anticipated negative reaction from others, social ostracized, fear of socializing, think less of themselves/low self-esteem, social isolation, self-imposed isolation, concern about disease transmission and fear of contagion to others, efforts to protect others from infectivity to others, desire to conceal TB diagnosis from others, disease disclosure to protect others. Acha et al. (2007, pp. 406 & 410) and Vega et al. (2004, pp. 751-752) concur that also DR- TB patients experience immense social stigma which affects patients both socially and psychologically. The TB stigma does not only result from larger community, but also from the patient’s immediate family (Acha et al., 2007, p. 410). It can also be self-imposed by patients on themselves. Thus stigma can be both enacted and felt (Karim et al., 2007, pp. 145, 148 & 149).

Individual TB patients are prone to discrimination, stigmatisation and labelling. On micro level such negative attitudes and treatment towards individual TB patients can have a negative impact on [their] psychological/emotional state, as well as attitude to disease and TB treatment. Considering macro level factor, TB stigmatization impacts negatively on TB control (Karim et al., 2007, p. 140; Moller & Erstad, 2007, p. 104; Vega et al., 2004, p. 751). Individuals delay to seek help when presenting with TB symptoms or they are discouraged to present for and to complete treatment or refuse treatment, thus causing burden of disease and transmission (and including DR-TB) in communities, decreased cure rate, and increased mortality from TB.

More awareness remains essential to address among others, fears and prejudice related to TB, and also to educate communities and respective families of TB patients and to encourage social support.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 25

Moreover psycho-emotional support needs to be offered to TB patients during different stages of the illness, treatment and disease management and monitoring, which patients often lack and affect adherence and recovery as well as psychosocial wellbeing. TB patients need acceptance and support to cope with their disease, illness hospitalization and its effects.

2.3. Selecting a Theoretical Lens Several psychosocial factors associated with DR-TB can affect the patients’ psychosocial wellbeing, bringing about disequilibrium, and leading to various challenges. As a result patients may become distressed, feel worthless and lose hope (Acha et al., 2007, pp. 405-406). It may therefore be difficult for the DR-TB patients to cope with their disease, long hospitalization and treatment and consequent effects. Although medical attention often focuses on the physical state of the patient, the mental health of the patient is equally important. Thus, psychosocial support during this long and demanding treatment and hospitalization for DR-TB is the responsibility of the social worker; mainly such support is to ensure the patients’ psychosocial wellbeing and restoring personhood.

Different therapeutic interventions can be rendered to DR-TB patients to manage this crucial component of management of long term hospitalization. For instance, group therapy has been used in several settings with MDR-TB patients who presented with emotional difficulties (for an example feeling depressed, sad, withdrawn, and suicidal), mainly with the focus on psychosocial support (Acha et al., 2007, pp. 406-407). It is indicated that this group intervention has proved to be effective to assist MDR-TB patients to cope better with the treatment and faced psychosocial challenges, improving quality of life. Group therapy has also been used in various settings to improve the quality of life and survival among other patients with chronic illness (for instance HIV/AIDS). Acha et al. (2007, p. 406) state that “group therapy has demonstrated to reduce depression and the disability associated with it”. The study conducted in Lima, Peru on psychosocial support groups for patients with MDR-TB illustrates this. Individual psychotherapy or interpersonal helping has been used for drug sensitive TB, and demonstrated to improve treatment adherence (Acha et al., 2007, p. 415).

Despite the interventions mentioned in the above being effective, interventions draw on various theories/approaches/perspectives. Social work practice employs an eclectic approach. No single system of intervention has been able to deal adequately with the complex of human behaviour which a clinical social worker faces in everyday practice. It is therefore important for the social worker to be knowledgeable and competent in a variety of approaches and be able to apply them

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 26 based on careful assessment, and in response to the conditions and problems faced by patients to bring about change enhancing the person’s mental and social wellbeing.

I have not come across literature on approaches to management of LTH for DR-TB patients. Other theories can be used to manage one or other component of DR-TB management and treatment. For instance, behavioural and cognitive theories can be used when working with DR-TB patients to increase adherence as DR-TB treatment is long, usually 24 months. Adherence to long term DR-TB treatment can be difficult for patients for various reasons, and this must be managed effectively to restore personhood of patients.

Behavioural theory assumes that all behaviour is learned and that problems are reflected in behavioural terms that are persistent and maladaptive responses. Since behaviour is learned it can be unlearned. Problems, once translated into behaviours, can be changed by addressing the antecedents and consequences that surround the behaviour. The antecedents are either internal (thoughts) or external (environmental cues), while consequences may be punishments or rewards for the behaviour. This change is based on concepts from social learning theory. Techniques used in behaviour therapy are positive and negative reinforcement, modelling, systematic desensitization, flooding, rehearsal, role playing, social skills training, token systems and contingencies. The therapy aims to change the response patterns or modify behaviour (Maguire, 2002, pp. 47-48). However, behavioural therapies have been criticised for lacking individualised approach and not adequately considering the influence of the unconscious on behaviour. Putting this theory in the context of DR-TB management, patients go through emotional difficulty and suffering due to prolonged hospitalization and treatment. The theory fails to address the internal processes/thoughts of the patients that are reflected in the patients’ existential questions/crises that are precipitated by hospitalization and life threatening disease.

On the other hand cognitive theory focuses on the individual’s thinking as the core determinant of behaviour and affect. Cognitive theory states that problems are primarily driven and maintained by cognition. Problems arise as a result of errors in thinking or understanding, irrational thinking or beliefs, and unconscious schema which impact how we view the world and ourselves. When stressed, a person is not able to make appropriate behavioural decisions except for seeing the world as all good or all bad, because they cannot analyse data in an objective helpful way. Common thinking errors may include all or nothing thinking, overgeneralization, focusing on the negative, minimising/magnification, personalizing, disqualifying the positive, perfectionism, and emotional reasoning. Techniques associated with cognitive theory are: clarifying internal communication, daily record of dysfunctional thinking, thought blocking and homework related to clarifying

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 27 thinking (Maguire, 2002, pp. 48-49). The intervention aims to help the individual re-think such beliefs and look at alternative and more realistic explanations to ultimately change behaviour. Cognitive theory is criticised for being more directive and focusing on preventing undesired behaviour and not looking enough to the unconscious origin of the beliefs that brings behaviour.

Coping is not readily observable and can be easily undervalued. Patients often struggle with illness and hospitalization, which affects their sense of life, engendering existential questions. Therefore, patients must understand and learn to cope with existential questions such as who am I, why is this happening to me, how will my life change, what is the value and meaning of my life? Patients may feel that the world is unfair to them and experience pain and suffering and this threatens their existence. It is the responsibility of the clinical social worker to be able to assist patients to deal with existential questions/crises which may be precipitated by hospitalization. Therefore, I choose existential approach for this study.

Since clinical social work adopts an eclectic approach to practice, the social worker must be able to choose and apply whatever approach that is considered to be most effective. The choice of theoretical approach is a response to the patient’s needs, conditions or problems, with the aim to bring about positive change and restore individuality. Also such choice must be in line with the values of social work profession. Therefore, my choice of existential approach was in response to the patients’ concerns, hardships and challenges of hospitalization which came up in social work sessions and was reflected in questions about their existence and meaning. I consider this approach ‘fit’ as it has a strong individualised approach necessary to understand intrapersonal experiences of patients engendered by hospitalization. It also has a commitment to respect, dignity and endorsing individual responsibility.

I have chosen to use Yalom’s (1980) framework because through my years of practice as a social worker in health care in a DR-TB hospital, I have dealt with patients asking difficult existential questions, such as why me?, who I am?, where will I end?, where is the loving God? Yalom’s framework is helpful to make sense of the experience of DR-TB patients who are hospitalized for a long time.

2.4. Historical Development of Existentialist Philosophy Existentialism, also known as philosophy of existence, has a long intricate history and can be traced back towards the end of the nineteenth century. It began in Europe and England and eventually spread to the United States (Brockelman, 1980; Grossmann, 1984; Wahl, 1969, 1977; Warnock, 1970).Kierkegaard, Nietzsche, Husserl, Heidegger and Sartre are among those who have made

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 28 major contributions. Kierkegaard is regarded as the father of existentialism (Warnock, 1970, p. 12). His notions have immensely influenced and shaped the main perspectives of existentialism (Grossmann, 1984, p.70).Although his concepts were the foundation, others like Jean-Paul Sartre added new ideas and rendered some changes, for instance, Sartre’s work on the introduction of the concept of nothingness – i.e. a being cannot be addressed without a reference to the nothingness. The term ‘existentialism’ was not explicitly used until 1944.

Existentialism did not have a smooth and quick path. It was characterised by struggles and conflicts on ideas like boundary issues (Cooper, 1999; Worsely, 2002). These conflicts and differences were about certain ideas and use of certain concepts, for instance who could be called an existentialist or not, and on the other hand, some philosophers refused to be addressed by that term. Despite the difficulties, its founders agree on their common interest: human existence in the world and the essence of human freedom (Worsely, 2002, p. 169). This is the central aspect and value base.

Existentialism had a revolutionary influence and this prevails today. Its influence is found in other disciplines such as psychology, particularly psychotherapy, with the contributions of existentialist psychotherapists like Irvin Yalom, Rollo May and Viktor Frankl, and writers such as Albert Camus among many others. Such influence is also found in the social work profession (Payne, 2005). Neil Thompson (1992) and Donald Krill (1978) are some of the authors who are trying to show that existentialism has a particular influence and relevance to social work practice. From these efforts, the literature on existentialist social work was developed for dialectical and pragmatic purposes, with Sartre’s precepts being the key influence on the work of Neil Thompson. The principles for existential psychotherapy or existential analysis were then formulated (Brockelman, 1980; Thompson, 1992; Van Deurzeun, 2001; Worsely, 2002; Yalom, 1980).

2.5. Defining and Describing Existentialism Existentialism is the philosophy of ontology, the study of being – about each individual person and his/her unique existence in the world. It also seeks to show people that they are free conscious beings and have full responsibility for their lives through their decisions and actions (Frankl, 1986; Thompson, 1992; Worsely, 2002; Yalom, 1980). Existence and choice are the two major themes of existentialism (Frey & Heslet, 1975).

Existence is essential and constitutes human reality. A human being is a conscious, rational, free and autonomous being who is thrown in the world, exists alone, and is therefore in continual interaction with the world– his/her immediate environment (Frankl, 1986; Frey & Heslet, 1975). According to Worsely (2002, p. 147) “to exist means to stand out against the rest of the universe, to

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 29

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 30 be different as a person.”

To exist authentically in the world, a human being should be able to differentiate him/herself from others to survive in a meaningless world; a person should be able to create meaning through his/her own experiences. This involves choices and actions; a person has to live in the present with intentions, and goals for the future, conscious of the temporal possibilities (Frankl, 1986; Krill, 1978; Thompson, 1992).

In this process, a person is constructing his/her reality in response to the immediate environment, emerging as a unique being, characterised by needs, values, goals, meaning, limitations and potential. Freedom and the task of creating his/her own meaning are essential characteristics of an authentic being (Frankl, 1986; Krill, 1978). Such a person will be content and secure in his/her identity and existence, capable of transcendence in an absurd and harsh world. Human existence is filled with many complex and conflicting situations which may exert pressure on us and threaten our human reality (existence), and how we perceive the world and our existence. Existentialists maintain that anything which threatens our existence produces fear and anxiety, for instance, the knowledge and awareness of the reality and presence of death, our own death and finiteness.

People develop fear of nothingness (anxiety) as a result of the reality they have created in response to their own environment (Frankl, 1986; Thompson, 1992; Worsely, 2002; Yalom, 1980). When people are consumed with fear and anxiety affecting and threatening their existence, they stop existing. In existentialist terms, they annihilate their existence; this will ultimately cause them to enter into a state of bad faith2, refusing or ignoring awareness. They are no longer responsive to their environment and eventually lose the will to meaning and continued existence; they seek comfort through self-deception (defences). They evade the responsibility of life so that they cannot be affected by what is happening. In the process they lose their own selves.

This attitude entraps and prevents them from realizing and exercising their responsibility for life (Frankl, 1986; Frey & Heslet, 1975; Thompson, 1992; Yalom, 1980). They deny themselves the opportunities to make choices about their own lives and create or shape themselves and their destinies through ideas, goals, aims and purposes for the future. This process of future projection is important in existentialism. Avoidance brings alienation and meaninglessness. However, it is acknowledged that a person, who chooses the way of being, either authentic or inauthentic, is influenced by his/her own decisions and actions.

2In existentialism different terms such as bad faith and existential death are used interchangeably to refer to inauthentic existence. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 31

2.6. Existential Philosophy and Clinical Practice Existential counselling and therapy is a humanist approach. This approach was established and preferred by a number of therapists because of its high commitment and regard for the individual person. Existentialists see a person as a very important being: unique, responsible and existing freely. They hold that an individual should be treated as unique, with his/her singular traits and innate potential in a therapeutic encounter to achieve growth and positive change (Frankl, 1986; Frey & Heslet, 1975; Van Deurzen, 2001; Worsely, 2002; Yalom, 1980). They are against the interventionist methods which do not acknowledge the individuality of a person, and objectify him/her.

This approach is characterised by the following basic assumptions.

The human being as the central focus. Existential psychotherapy regards a person as unique, conscious and highly existent and seeks to understand an individual within his/her immediate environment, with personal frames of reference, not in terms of mass or societal norms. A human being does not have a static, predetermined nature, but is responsive to situations and can question everything. The self is virtual creating itself by decisions and actions. Although in constant transformation, it seeks to maintain itself as well.

Anxiety. Anxiety plays an important role in existential psychotherapy, serving two functions, either as a guarding tool or as disturbing, overwhelming and completely interfering, leading to a state of bad faith, for instance in cases such as schizophrenia or depression (Frankl, 1986; Grossmann, 1984; Yalom, 1980). People continually seek to protect and maintain their life status to what they perceive as good, satisfying and acceptable, giving meaning and purpose in life for continued existence. They are vulnerable to death and scared of what could go wrong in their lives, resulting in persistent anxiety. Life events can be either good or bad. When something life-threatening happens to our security, stability, assurance, comfort zones, faith and even our own reality, we become aware of the impending threats; these stir up fear. We are afraid of the anticipated disruption and loss – we tend to worry and wonder about the what, when and how and become haunted by the meaning and purpose of our lives. Anxiety will become manifest. Treating anxiety is vital and should be addressed in a therapeutic encounter.

Death. Life and death are intertwined. The essence of life is that we should understand that life has both negative and positive aspects. We have to accept and learn to cope with the tensions and complexities of our daily existence if our lives are to be meaningful (Frankl, 1986; Van Deurzen, 2001; Yalom, 1980). Since we exist in time, each person must boldly face and deal with the prospect of death, rather than avoiding it. The awareness of our finiteness – of our temporality – An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 32 should not provoke fear and negate our existence (Frey & Heslet, 1975), but give our lives a meaning and grant us a greater desire, will and purpose to want to continue. This is vital, leading to growth and acknowledging our responsibility for our lives (Cooper, 1999).

Authenticity. A person must strive for authenticity, exercising responsibility despite the circumstances, through understanding and reflecting about ourselves, others and the environment. Certain people ignore and avoid their reality and responsibility, adopting different defence mechanisms for survival and comfort. These attitudes are detrimental as they halt growth and the opportunity of gaining deeper insight.

Temporality. Our existence is temporal and finite. A person must, nevertheless strive for meaning and purpose. Three dimensions of time– the past, present and future – are part of human existence (Frankl, 1986; Thompson, 1992; Van Deurzen, 2001; Yalom, 1980). The concept of the future is fundamental to existential psychotherapy, as a person is motivated by goals and intentions for the future, but the decisions and actions occur in the present. The past is the person’s history, something already known and is not of major concern to the existentialists. The future on the other hand is unknown. All these dimensions are interrelated and influence each other, and we attribute meaning to them.

Reflection. We need to be aware and conscious of what is happening to and around us always. People cannot exist in a state of complete unconsciousness. A person has deeper and concealed subjective truths which are unreachable and cannot be objectively understood by an outsider. People need to look deeper into their lives if they are to gain the inner truth; it is through deep reflection that we can gain a better understanding of what it is happening to us and exercise the freedom invested in us.

Change. Change is the fundamental aim of existentialism, aimed at showing people that they are free and have the potential to exist fully and meaningfully in an absurd world.

These basic assumptions are shared by most existential psychotherapists and form a meaningful thread for existential therapy, though they might be expressed in different words and terms. Yalom (1980) gathered these varied assumptions into a meaningful and systematic framework and termed them the four ultimate concerns of existence. He states that people always raise these issues in therapy and therefore believes they are intrinsic and essential to all clinical practice.

Existential therapy is a deep, direct therapeutic encounter (Yalom, 1980). It stresses that as the person is the focal point, the therapist must adopt a phenomenological approach and in addition think existentially. This is very important, as it enables the therapist to enter the individual’s unique An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 33 inner world and understand it from his/her frame of reference by showing empathy, acceptance, respect and bracketing (Baldwin, 2000; Brockelman, 1980; Grossman, 1984; Rogers, as cited in Worsely, 2002).

This relational attitude will ensure that the focus is on the patient and his/her own inner world rather than techniques, standardised instruments and symptoms (Frankl, 1986; Van Deurzen, 2001; Yalom, 1980).The therapist must not ignore, but embrace and explore the existential questions about human existence. Ideology and beliefs play an important role in construction of human reality; the self is the centre of therapy and this essentiality is paramount in understanding and eventually knowing what is happening, how the self is experiencing the situation and how it is threatened and/or affected. When we understand the intrapersonal conflict of the client, we can enable him/her to become aware of the responsibilities and facilitate positive change in creative, experiential and attitudinal values (Frankl, 1986).

2.7. Existentialism and Long Term Hospitalization for DR-TB Existentialism holds that there is no given human structure; the individual is thrown in the world and has to consistently strive to ‘become’ through life choices (Brockelman, 1980; Frankl, 1986; Thompson, 1992; Yalom, 1980). The individual life is lived in ‘radical openness’, which signifies a life full of unlimited possibilities.

Human existence is filled with multifaceted challenges that can severely interrupt a person’s life, bringing about both loss and cumulative loss. Disease or illness3, including consequent hospitalization, is one of those life events. It can also be traumatic (Blue-Langer, 1996; Field, 1967; Parry, 1989; Radley, 1994; Ross, 2002; Ross & Deverell, 2004; Sourkes, 1982; Wilson-Barnett, 1979). Prolonged hospitalization can aggravate the trauma as all aspects of life are changed. A person is abruptly forced into a sick role, losing the sense of independence and control. This affects a person’s identity, tarnishes self-esteem and creates a sense of being in a completely different world requiring the person to adapt to the changes (Neimeyer, 2001; Noonan, 1981; Radley, 1994; Ross & Deverrell, 2004).

Loss, not only death related, is common in patients and can have devastating psychosocial effects (Firth, Luff, & Oliviere, 2005; Neimeyer, 2001; Parry, 1989;; Payne, Horn, & Relf, 1999; Roos, 2002; Thompson, 2002). Prolonged hospitalization increases the complex emotional reactions (Wilson-Barnett, 1979), inevitably resulting in both actual grief and anticipatory grief about one’s

3There is a high relation/overlap between the concepts disease, illness and hospitalization, and therefore it is difficult to talk about hospitalization alone without referring to illness or disease. However it is recognised that disease and illness are not the focus of this study – long term hospitalization is. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 34 existence (Kubler-Ross, 1981; Parry, 1989; Roos, 2002). A person is separated from routine life and the normal world and isolated (Field, 1967; Noonan, 1981; Parry, 1989; Roos, 2002). Marriage and family life, friendship, employment and continuity to work, school attendance and academic achievement seem gone, leaving the patient alone.

A person feels disenfranchised, betrayed and exploited by the universe. Some patients find this experience overwhelming and cannot cope with all the losses. Sourkes (1982, p. 32) states that in such instances the patient will consider suicide to cut short the period of suffering. However, even in the presence of suicidal ideation and gestures, it is rare that the person will carry out such an act, but such an attitudinal reaction is possible (Frankl, 1986). Despite these numerous psychosocial effects, patients react to illness and hospitalization differently (Roos, 2002; Wilson-Barnett, 1979).

Many people are able to cope with illness/hospitalization fairly well as they regard the time as an opportunity for change, growth, dealing with unfinished business and restructuring their life plans and goals. Others escape reality and avoid responsibility; they display different forms of defence mechanisms, feelings of fear, anxiety and powerlessness about their lives.

It is vitally important to understand the patient’s experiences in terms of the emerging themes and meanings. These may be more severe in the case of LTH for DR-TB, as hospitalization is often involuntary and varies from 6 to 24 months, depending on the person’s response to treatment. As LTH involves complete withdrawal and isolation of patients from their regular social environments it has tremendous effects on the patient on all levels of social functioning and causes physical and psychological burdens (Ginsberg & Spigelman, 2007). Furthermore, the restrictive hospital environment is disempowering. Patients are bound by hospital rules and routines (Field, 1967; Noonan, 1981; Sourkes, 1982)

Human existence demands that we answer to our lives by being responsible, as responsibility is important for survival; however, not every person is aware of and comprehends this task (Brockelman, 1980; Frankl, 1984, 1986).

People are often haunted by existential questions when a traumatic and irreversible event happens. According to Sourkes (1982, p. 55), “a sick person lives in a ‘neutral time’ ... in a state of limbo, wherein the only certainty is, paradoxically, uncertainty.”

2.8. A Brief Introduction Yalom’s Existential Psychotherapy Yalom (1980, pp. 5 & 8) “defines existential psychotherapy as a dynamic approach to therapy that focuses on concerns rooted in an individual person’s existence. It is based on the conflict flowing

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 35 from the confrontations with an inescapable part of existence”. Yalom (1980, p. 8) further states that these 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.

Yalom (1980, p. 8) states that deep personal reflection, coupled with solitude, silence, time and freedom, plays a critical role in discovering these ultimate concerns. This process of deep personal reflection is put into motion by an individual’s confrontation with certain urgent experiences that are irreversible or inescapable, and affects his/her perspective of life or life meaning. A person has to reflect deeply on his/her life situation, be aware and gain a deeper understanding of what is happening.

Yalom (1980, pp. 8 & 23) identifies four ultimate concerns: death, freedom, isolation and meaninglessness. The person’s confrontation with each of these givens of existence or facts of life constitutes the existential dynamic conflict in a person; a conscious being participates in the construction of own reality. Concerns give rise to the conscious and unconscious fears within the person. Anxiety causes people to use defence mechanisms for comfort and protection from unpleasantness. This is detrimental and restricts growth and experience. The therapist must deal with these issues and facilitate beneficial change. The following section focuses on Yalom’s four key ultimate concerns in human existence.

2.8.1. Death (and Death Anxiety) Definition of Death and Existential Conflict. Death is a fundamental aspect of existence, yet much feared and unwelcome by most of us. Death, particularly physical death, is feared as a destroyer rendering life meaningless; this is ubiquitous (Frey & Heslet, 1975; Kubler-Ross, 1970; Yalom, 1980). When Yalom (1980) talks of death, he goes beyond just a mere physical death – he explains the deeper levels of concealed, internal fears and conflicts on facing death. The existential paradigm maintains that death anxiety emanates from person’s confrontation with his/her own mortality (Worsely, 2002; Yalom 1980). Therefore according to Yalom (1980, p. 8) “this confrontation with one’s own death is the tension between the awareness of the inevitability of death and the wish to continue to be.” Each person must face death alone.

Effect of Death and Death Anxiety on Human Existence. All people are faced with death because of innumerable stresses in their lives (Kubler-Ross, 1970; Parry, 1989; Yalom, 1980). Traumatic and unalterable life situations may cause vulnerability and also be devastating. Some find it easier to cope with life, whereas others crumble and struggle. An experience like long term

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 36 hospitalization is often filled with differing feelings at varying stages and times with dread and anxiety being inevitable. Existentialists maintain that although death is feared, it has the potential to bring significant meaning to a person’s life and change his/her life perspective. It brings finiteness, but also the future to human existence (Frankl, 1986; Sartre, as cited in Thompson, 1992; Wahl, 1969). This sounds paradoxical, but is fundamental in humans. What matters is our attitude towards death; this influences the way we live our lives and grow. Literature indicates that patients facing life threatening diseases like cancer were ultimately able to find fulfilment through the traumatizing experience of illness (Kubler-Ross, 1970; Parry, 1989; Yalom, 1980). This constitutes acceptance of one’s situation (Kubler-Ross, 1981), and is a step towards exercising responsibility and achieving self-actualization (Frankl, 1986). Yalom (1980) terms death as a boundary situation.

Hospitalization from any disease comes as a shock; this worsens if hospitalization is prolonged as in the case of DR-TB. Isolation creates an awareness of existence and vulnerability, death and nearness of death. This awareness provokes death fear within patients which then influences their attitudes towards their medical condition. I have seen some DR-TB patients easily accepting their hospitalization, and vowing to adhere to treatment to be cured quickly and get out. Others were overwhelmed by their illness and consequent hospitalization, refusing any help or treatment and wanting to die.

Existentialists acknowledge death fears, but emphasize that we must embrace death resolutely because it brings meaning to life. Frankl (1986, pp. 42-46) states that there are three sets of values (creative, experiential and attitudinal) a person can adopt in such inescapable situations to achieve self-actualisation. Each value is important and relevant to time and the patient’s needs. Facing death need not be overwhelming.

Conversely, fearing death can result in death anxiety (Gillis, 1988; Kubler-Ross, 1970; Sourkes, 1982; Wilson-Barnett, 1979; Yalom, 1980). This anxiety is disguised as depression, depersonalization syndrome, compulsive behaviour and hypochondria.

Coping with Death. When facing death becomes unbearable, a person searches for escape routes and adopts what Yalom (1980, p. 115) terms death denial defences. These coping mechanisms constitute only a temporary relief and are considered ineffective because they prevent personal growth and change.

Denial is an effort to cope with the anxiety associated with a life threat, but is also a function of a deep belief of inviolability (Kubler-Ross, 1970; Yalom, 1980). Kubler-Ross (1970, p. 35) says denial is used by almost all patients to cope with the painful experience of death, which some of

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 37 these patients have to live with for a long time. The levels of denial differ from anxious denial and partial denial to extensive denial. This does not mean that the patient will not be happy. All people have complex and ambivalent feelings of the everyday awareness of death and the full facing of death according to Yalom (1980, pp. 118 & 120).

Hospitalized patients may deny the diagnosis, or be aggressive, blaming those around for their hospitalization and/or choose to be submissive and cooperative with the health staff (Gillis, 1988; Wilson-Barnett, 1979). Aggressive behaviour is common, with an increase of violence against health care professionals. It is important that health professionals are aware of the underlying reasons for that aggression (Wilder & Sorenson, 2001). I have seen this behaviour in my hospital. Patients incite violence; demand premature hospital discharge and/or refuse to take their treatment. Therapists must understand and deal with the reasons behind such behaviour.

Yalom (1980, p. 117) identifies two death denial defences: beliefs in specialness and an ultimate rescuer. First, Yalom (1980, p. 118), says specialness denotes irrational perceptions beliefs or myths held by a person when facing an unpleasant, unalterable situation. A person in denial thinks that any bad or painful event, including death will not happen to him/her, but only to others. As the truth emerges, that person has to come to terms with the deeper reality: no one is immune.

Second,Yalom (1980, p. 129) states that, the person in an unpleasant situation believes and keeps on hoping that there is someone protecting him/her. This role is often the significant others, e.g. a person’s partner or spouse, friend, parent, child or even the doctor. The sick person will live for and depend on this rescuer. The person will carry this perception for as long as he/she continues to believe and trust in this mode as long as it is effective in controlling and concealing death anxiety.

When the infected person loses faith and belief in the ultimate rescuer, then there will be varying attitudinal changes: some isolate themselves, spending most of their time in their beds, others refuse to take medication or want to be discharged, while others discharge themselves against medical advice. This stage signifies the onset of what he calls depression.

This death denial defence can be ineffective when the power and the presence of the ultimate rescuer fails or is withdrawn, e.g. when a person’s child or spouse dies, or when one’s friend, spouse or relative withdraws (Yalom, 1980). A person will search for new relationships or repair the existing ones to survive. It is therefore important to understand the pattern relationships of the patient and his/her relationships with others.

Role of Therapy and the Therapist’s Task in Death. Existential death is important to human nature and should not be ignored in therapy (Frankl, 1986; Frey & Heslet, 1975; Kubler-Ross, An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 38

1970; Worsely, 2002; Yalom, 1980). However this phenomenon is often camouflaged and thus missed by therapists, sometimes because therapists over-emphasise physical death and neglect existential death, and sometimes because engaging with the patient’s mortality is threatening to the therapist. The therapist thus has to be sensitive to manifestations and understand and identify the source of death anxiety, whether it is death as a boundary situation or death as a primary source of anxiety, and engage in an objective discussion and show interest in the patient.

It is crucial that the therapist has the ability and confidence to deal with this most feared phenomenon in order to benefit the patient and cause positive change. Yalom (1980) and Frankl (1986) mention that often therapists avoid dealing and further exploring the subject of death, giving preference to the ‘soft issues’. A therapist must probe with awareness and sensitivity.

Conclusion. Death has the potential to overwhelm or bring change and growth to a person depending on his/her experience and attitude, and the therapist has to work through the issue to facilitate change in the person’s assumptive reconstructed world.

2.8.2. Freedom Defining Freedom and its Existential Conflict. Freedom is defined by Yalom (1980, p. 217) as the human’s ability to create, desire, choose, act and to change his/her life. It is central to human existence and important for survival, thus each person is entirely responsible for his/her life and conduct (Frankl, 1984, 1986; Worsely, 2002).Freedom in this existential sense has a terrifying implication; there is no structure, leaving one confronted with groundlessness. According to Yalom (1980, pp. 8-9), “a key existential conflict is our confrontation with groundlessness.”

Responsibility and Existence. According to Yalom (1980, p. 218) “responsibility means authorship; to be aware of responsibility is to be aware of creating one’s own self, destiny, life predicament, feelings and suffering.” To gain this awareness, it is important to engage in deep personal reflection and attempt to gain a new and deeper perspective thus becoming autonomous. Unless people are capable of this reflection, they will continue to live as if nothing has happened, failing to achieve responsibility and live to their full potential.

This reflective process can be extremely demanding, evoking bad emotions. Once a person gains understanding through deep reflection, he/she is still confronted with responsibility. He/she must decide and act even when confronted with an unalterable situation because s/he has choices. The environment does not shape the person (Frankl, 1984).Choices will influence attitudes and emotions. Frankl (1986, p. 106) says, “Human life can be fulfilled in suffering.”

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Clinical Manifestations of Freedom (Avoidance of Responsibility). Not every person is able or willing to face this deep level of responsibility (Frankl, 1986; Yalom, 1980). People can be overwhelmed and frustrated by their awareness of the responsibility to the extent that they avoid taking any responsibility and exercising control over their lives (Frankl, 1986; Sartre, 2007; Yalom, 1980).They adopt responsibility-avoiding defences. Yalom (1980, pp. 224-230) identifies five responsibility-avoiding defences often used:

1. Innocent victim. People perceive themselves innocent victims of events.

2. Avoidance of autonomous behaviour. People who know exactly what to do refuse to take steps and stay in the unchanged situation. This shows the person’s dependent character, belief in the ultimate rescuer and fear of facing deep existential loneliness.

3. Displacement of responsibility to another. A person shifts the burden of responsibility to others, attributing the problem to external factors, disowning feelings, shifting them to others and consistently attributing their unhappiness and failures to external influences.

4. Losing control. A person acts irrationally or temporarily crazy to get nurture and care from others. Such irrationality is not disorderly.

5. Compulsivity. A person avoids responsibility and choice by compulsivity, e.g. sexual promiscuity, complete immersion in work and so on.

Yalom (1980, p. 236) mentions that in addition to these, people also resist by using statements such as: I can’t, I don’t know what to do, tell me what to do. The patient fakes helplessness.

Responsibility Assumption Role of therapy. People are capable of assuming responsibility in life, either fully or in some parts of life when they grasp their life situations and accept them. The aspects of freedom have an important, everyday relevance to therapy, and also to the therapist (Yalom, 1980, p. 217). The goal of this therapy is to bring the patient to the point of making a choice (Yalom, 1980, p. 216). It is important for a person to understand that, although one is a free being, there are responsibilities. The concept of freedom is also important to therapist who must be aware of the role the patient is playing in creating her/his situation.

Conclusion. Responsibility is central to human existence and must be exercised at all times. The experience or awareness of responsibility can be fulfilling or overwhelming depending on one’s attitude and choice. This concept of freedom is of relevance to therapy and must not be ignored.

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2.8.3. Isolation Existential Isolation (EI) and Existential Dynamic Conflict. Existential isolation (EI) refers to separation of a person from the world casting him/her into a state of complete aloneness. According to Yalom (1980, p. 358), “being separate means to be cut off, without the capacity to use human powers, being helpless, unable to grasp the world actively – the things and people.”Each person is absolutely alone in the world, regardless of how many people or objects surround him/her.

Yalom (1980, pp. 8-9) states that confrontation with the ultimate concern of EI results in existential dynamic conflict. It is the inner conflict arising from our awareness of our complete aloneness in the world and our innate need for continued attachment with others and interaction with the larger world for sense of protection.

EI and Relationship (Confronting EI). EI is feared, as it is a deep loneliness. Such an experience is distressing because of the perceived threat to one’s existence, as well as the fear of facing one’s separateness from the world, alone.

This experience of EI becomes overwhelming. People have an innate need for attachment and want to be around others, seeking relationships for security and protection. Such relationships can become unhealthy if the person tends to live for others and depends on them, gradually losing his/her own self (Yalom, 1980).

We have to face EI alone for our lives to be meaningful and grow by the process of differentiation. A person has to embrace its experience, not avoid it; in doing this a person will not be overwhelmed.

EI and Therapeutic Intervention. The task of the therapist is to understand a person’s behaviour and internal conflict because of the fear of EI and failure to cope. The therapist must in addition facilitate a therapeutic process to help a person gain awareness and acceptance by facing EI resolutely, separating and growing.

The experience of isolation from their social environment is perhaps profound for those in LTH for DR-TB precipitating, for many, an existential dynamic conflict. The role of the social worker is to assist the client in facing not just their social isolation, but also the underlying EI.

2.8.4. Meaninglessness The Problem of Meaning and Existential Conflict. People require meaning in life; it is essential for survival (Frankl, 1984, 1986; Krill, 1978; Roos, 2002; Yalom, 1980). When people find no

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 41 meaning they enter into a distressing state of meaninglessness or crisis of meaning and are impelled to question the meaning of life. Camus (as cited in Yalom, 1980, p. 420) regards this question of life’s meaning as the most critical question of human existence.

Furthermore, Krill (1978, p. 26), Roos (2002, p. 131) and Yalom (1980, p. 419) maintain that this question takes many forms: What is life all about? What is my life for/ what do I live for? Why are we brought here on earth for? /why are we here on earth? What is the purpose of our living? What guides my life? How can this happen to me? How can I continue to believe that there is a benevolent purpose to life? Who am I? Who will I be?

In practice, DR-TB patients, because of the nature of their disease and ensuing prolonged hospitalization, compounded by numerous effects on their life, ask existential questions relating to their diagnosis as well, for instance, where they got the disease and why it is happening to them.

Meaning can be divided into two categories: 1) the cosmic meaning (i.e. what is the meaning of life) and 2) terrestrial meaning (i.e. what is the meaning of my life) (Frankl, 1986; Yalom, 1980). People question the universe (cosmos) and what is happening in it, whereas terrestrial meaning is concerned with purpose. The question of life meaning is persistent and demands immediate answer(s). Yalom (1980, p. 420) states that “without any answers is impossible for a person to live.” In addition, Camus (as cited in Yalom, 1980, p. 420) states that “the only urgent question to answer is whether to go on living once the meaninglessness of human life is fully grasped by a person.” The state of meaninglessness is extremely distressing, with the potential of causing the following: a)To stop living and totally inhibiting the full and meaningful existence, as in the case of illness (Yalom, 1980, p. 421). A person experiences tremendous stress, which can cause neurosis, particularly noogenic neurosis: the loss of meaning in life (Frankl, 1984, 1986). People are haunted by the senselessness and aimlessness in their lives, provoking existential frustration. This phase is more common among hospitalized patients, and is also commonly noticed in therapy. DR-TB patients experience depression from the effects of prolonged hospitalization and other related issues. A differential diagnosis is important to determine the source of depression (Qualls & Kasl- Godley, 2010). b) To lose the will to live (Yalom, 1980, p. 421).In severe forms this can lead a person to commit suicide when a person is unable to find meaning and is convinced that there is no value, reason or purpose to continue living, that person then loses the will to continue living – they are haunted by the idea that they can expect nothing from life, they have no hope, goals or direction. This state of meaningless can lead a person to commit suicide. As a social worker, I have known DR-TB patients

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 42 who stayed longer in hospital or who were not responding to DR-TB treatment and who lose the will for living; some want the treatment to be discontinued and be discharged prematurely to die peacefully at home.

The problem of meaning is common to all humans. According to Yalom (1980, p. 9), “the existential conflict arising from confrontation with the ultimate concern of meaninglessness is the dilemma of a meaning-seeking human being who is thrown into a universe with no meaning and structure, and how a person who needs meaning in life finds one in the universe with no meaning, but is contingent”.

Purpose of Meaning in Life. According to Yalom (1980, p. 445) meaning is important for survival and remains essential throughout life. People need to have purpose and feel that their life is worth living, that they matter; they need to accomplish and self-actualize(Yalom, 1980, p. 423).This implies a search for coherence in life; to achieve meaning and purpose, people engage continually in life routines. Yalom (1980, pp. 431-438) refers to these as secular activities, and identifies the following five which people usually adopt to fill their life with meaning,

1. Altruism. A person engages in altruistic activities (e.g. charity work) to serve and be useful to others and leave the world a better place.

2. Dedication to a cause. A person devotes him/herself to a cause, for instance, family, scientific venture, politics or a religious cause to contribute to others.

3. Creativity. Individuals want to improve the condition of the world by being creative which overlaps with altruism, and is not limited to the creative artist.

4. The hedonistic solution. A person chooses a life of pleasure seeking.

5. Self-Actualization. People strive to actualize in order to realize their inner potential.

These meaning-giving activities feel good and right and provide a person with purpose and provide intrinsic value and satisfaction in everyday life. Problems arise when these activities no longer have meaning. Then a person’s meaning in life will collapse.

Meaning can be realised by exercising creative, experiential and attitudinal values when confronted by challenging and irreversible situations. These categories of values are the individual person’s ability to face with courage the unalterable life experiences, and take out important lessons to effect positive change on own life and of others (Frankl, 1986; Yalom, 1980). Such categories of values will change from time to time, influenced by the demands of a particular situation. These three

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 43 meaning systems are important with the attitudinal values the highest. People are able to transcend traumatic situations, achieve individuation and find meaning.

Loss of Meaning: Clinical Manifestations and Implications. Work, social position, wealth, success and power are temporal and will collapse. Such activities engage people in a daily life routine without time for reflection on their existence. When these activities become meaningless or are removed because of an unalterable situation, then a person is confronted with too much time. According to Yalom (1980, p. 446), time is problematic because it thrusts freedom on a person who is then forced to examine a state of meaninglessness. Meaninglessness is closely related to leisure and disengagement (Frankl, 1986; Yalom, 1980).

The crisis of meaninglessness has two stages according to Frankl (1986), first, the existential vacuum or existential frustration, where a person feels that his/her life is purposeless and lacks interest in continued engagement with life’ most activities, and resulting in experiences and complaints of pervasive boredom, emptiness and great unhappiness. Some suffer from “Sunday neurosis”, a depression affecting people who are convinced that their lives are useless and without goal, compounded by a sense of emptiness (Frankl, 1984, 1986). Second, the existential neurosis/noogenic neurosis: where a person experiences various neurotic symptoms such as alcoholism, depression or obsession arising from an existential vacuum. Yalom (1980, p. 450) states that the distinctive feature is derived from existential problems, and the behavioural patterns reflect the crisis of meaningless.

People need and search for meaning in life. A person’s wish for life’s meaning can be disappointed when answers to the question of life meaning seem no apparent, resulting in existential frustration. The experience of existential frustration is not pathological, but a form of existential distress when a person is confronted with meaninglessness (Yalom, 1980). This is wide-spread, manifests in disguised forms and can result in neurosis. A number of psychopathologies emanate from a sense of meaninglessness (Frankl, 1986; Maddi as cited in Yalom, 1980). Salvador Maddi (as cited in Yalom, 1980, pp. 450-452) identifies three common behavioural reactions to the state of meaninglessness: crusadism, where a person engages compulsively in activities in response to deep purposelessness, resulting from crisis meaning; nihilism, where a person seeks pleasure involved in destruction; and lastly, vegetativeness, mostly characterised by an extreme degree of purposelessness. People suffering from this experience associated depression and painful doubts, and these can worsen, where a patient sinks deeper into indifference and withdraws from any engagement in life. Most hospitalized patients suffer from this state. Such patients are mistakenly

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 44 diagnosed as schizophrenics or psychotically depressed whereas they are actually existentially ill. Meaninglessness is relevant in therapy and should not be ignored.

It is important that the therapist is attuned to the problem of meaninglessness and able to explore it effectively in patient therapy; it is also critical for the therapist, who must be interested in it, aware and listen attentively to uncover meaning-seeking and meaning-providing activities, as well as knowing the patient as deeply as possible from his/her own frame of reference (Frankl, 1986, p. 26; Yalom, 1980, p. 471).

Conclusion. The search for meaning is imperative for survival. The search of meaning can be frustrating, distressing and overwhelming. Knowledge of the sense of meaningless is vital in therapy.

2.9. Conclusion Existentialism is concerned with human existence in an environment. It illustrates that a person is a being who is unique, responsible and free. A person is called to live authentically in the world by being responsible and developing meaning in his/her life. Existentialism shows that there are two modes of being: authentic and inauthentic. An authentic being fulfils what it is to be fully human; an inauthentic being is the opposite where one uses defences which prevent authenticity of existence, growth and self-actualization. A person chooses his/her way of being. The social worker must therefore grasp the underlying perspective of existentialism and understand what it is to be fully human, in order to be able to conduct an existential therapy with patients with an effective outcome. The social worker has to clarify both practice and theory.

The next chapter focuses on methodology. It will describe how this study was carried out using qualitative research.

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Chapter 3: Methodology

3.1. Introduction This chapter will introduce and define the field of qualitative research. It will also describe how this study was carried out using qualitative research. Explaining and indicating how the research was designed and done by the researcher is a significant aspect of qualitative research and the major way in which rigour can be maintained. It is also important in showing how the researcher is constructing reality, maintaining subjectivity within this research approach (Holliday, 2007, p. 42). Therefore, in this chapter, I further explore the process of inquiry, analysis and ethical considerations relevant to qualitative research and as applied in particular to this study. This will increase the soundness of the study.

3.2. Research Goal and Objectives

The prime research question – What is the experience of long term hospitalization due to DR-TB like for DR-TB patients in hospital? –was used to explore, describe and develop deeper understanding of this experience. My starting point was that hospitalized DR-TB patients experience ultimate existential concerns, distressing them and complicating their lives. Confrontation with these issues is often painful and confusing. They can neither understand nor manage the experience and feel overwhelmed. The goal of this study was thus to describe the patients’ experience of being hospitalized for a prolonged period due to DR-TB within an existential frame work. In seeking to answer the research question and the research goal, I had four study objectives, namely to:

o Narrate the hospitalization experience of the DR-TB patients.

o Describe the hospitalization experience in relation to four key existential themes, namely death, freedom, isolation and meaning (Yalom, 1980).

o Outline the psychosocial impact of long term hospitalization for DR-TB in relation to these existential themes.

o Expand the knowledge base of social workers regarding the existential issues associated with working with DR-TB patients who are hospitalized for extended periods.

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3.3. Research Approach and Design Research approach. A qualitative, exploratory-descriptive research approach was adopted to answer the research question and meet the goal and the objectives of the study.

The two main approaches in social scientific research are qualitative and quantitative. I chose to use a qualitative research approach in this study. I considered it to be a better choice as it studies the participants in their natural setting, gaining first hand, holistic understanding of the phenomena and acquiring in-depth knowledge of the meaning the participants attach to their social world/everyday life.

Denzin (as cited in Rossman & Rallis, 2003, p. 6) states that “qualitative research is a broad approach to the study of social phenomena: the approach is naturalistic and interpretive and draws on multiple methods of inquiry.” This means it is conducted in the real world (natural settings) to study human beings (participants) through face to face contact (in-depth interviews) to understand people’s lived experiences from their subjective perspective. It uses interactive and humanistic methods; the participants and the researcher are in interactive relationship. Thus methods such as participant observation and qualitative interviewing are used to acquire in-depth knowledge and produce descriptive data. Qualitative research commonly uses strategies such as descriptive studies (Rossman & Rallis, p. 26).It is emergent, interpretive, holistic, reflexive and characterised by a stance of openness, curiosity and respect (De Vos et al., 2005; Rossman & Rallis, 2003).

Qualitative researchers become part of the process; they are learners, systematic and rigorous through reflexive reflection (to guard against unduly influencing the process and to control the researcher’s bias and subjectivity).Qualitative researchers, as learners, generate knowledge that can be used by different audiences to understand some facet of social world (Rossman & Rallis, 2003).

“Qualitative research is systematic. This means that a qualitative researcher follows a deliberate, conscious process of making decisions about data – about gathering of those data and meaning. The decisions must be explicated so that others may understand how the study was done and can assess its adequacy and trustworthiness” (Rossman & Rallis, 2003, pp. 11-12).

According to Rossman and Rallis (2003, p. 4), “qualitative research begins with a question; its ultimate purpose is learning”. Thus in the process of answering the investigated phenomena, qualitative research intends building in-depth knowledge or generating new understanding that can be used or applied in the social world (Rossman & Rallis, 2003, p. 6). “As qualitative research is emergent, it is regarded as resting on the principles of inductive logic, or reasoning from the particular to more general statements to theory” (Rossman & Rallis, 2003, p. 11).

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Social scientific research addresses the three most common and useful purposes of which are exploration, description and explanation, but there are many others except these three (Fouché, 2005). A given study can have more than one of these purposes – and most studies do (Rubin & Rubin, 1993).This study focused on two purposes: exploratory and descriptive. Hence it is called a qualitative, exploratory-descriptive study. I have chosen a qualitative, exploratory-descriptive research approach for this study, since this study seeks to explore and describe the experience of long term hospitalization due to DR-TB to develop deeper understanding of this experience. The chosen approach is most suitable to answer the research question and to meet the goal and the objectives of the study.

Exploratory research is carried out to develop deeper understanding into an area of interest or research question (Bless & Higson-Smith, as cited in Fouché , 2005, p. 106). Such a study is appropriate when a new area of interest is studied or in order to get acquainted with a situation (Fouché, 2005). The idea is to explore a topic. Mouton (as cited in Fouche , 2005, p. 106) states that an answer to a “what” question constitutes an exploratory study. The idea of this study was to explore the research question, “What is the experience of long term hospitalization due to DR-TB like to DR-TB patients in hospital?”, to provide new and/or better understanding into a research question. Exploratory studies are valuable in social scientific research and have a basic research goal, meaning that they are concerned with extending the knowledge base of the discipline and/or seek to formulate or refine theory through empirical observation (Fouché , 2005, pp. 105-106).The focus of descriptive research is to report about the phenomenon. When doing descriptive research, the qualitative researcher describes in detailed text what emerged and was observed in relation to the research question. Descriptive research is concerned with intensive study of the phenomena and their deeper meanings, through detailed description, yielding thick data (Fouché, 2005; Rossman & Rallis, 2003). It can have a basic or applied research goal, with the latter meaning that it focuses on improving troublesome circumstances bringing about change (Fouché , 2005, pp. 105-106). Rossman and Rallis (2003, p. 18) state that the purpose of descriptive studies is typically enlightenment, seeking to display deep insights.

The goal of the study was to describe the patients’ experience of being hospitalized for a prolonged period due to DR-TB within an existential frame work. Therefore, this was to develop specific details of the situation in answering the research question and thus developing thick descriptions.

Research design. The term design in qualitative research refers to the alternative choices which a qualitative researcher can adopt to study phenomena according to methods appropriate and relevant to the research question (Fouché , 2005, p. 268). Also it refers to all those decisions a researcher

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 48 makes in planning the study. At base, the research design means that the researcher needs a plan, determining what he/she is going to observe and analyse: how and why, that is, for what purpose.

The qualitative researcher’s choices of different research design for the specific study and consequent actions will be influenced by the study goal and the research question as well as the knowledge of the researcher (Fouché , 2005, pp. 268-269). There are different research designs that can be followed in qualitative research. Five common types of research design are identified by Fouché (2005, p. 269), phenomenology being one of them.

A phenomenological research design was used in this study to answer the research question and to meet the goal and objectives of this study. Cresswell (as cited in Fouché, 2005, p. 270) regards the phenomenological research design as that which seeks to describe and also focuses on understanding and interpreting the participants’ meaning of experience of the phenomenon. The aim of using phenomenology is to reduce the participants’ experiences to a central meaning or essence of experience (Fouché, 2005; Flick, Von Kardorff, & Steinke, 2005; Rossman & Rallis, 2003). In this study, therefore, the idea was to explore the meaning individual participants gave to their experience of the phenomenon. The aim was to gain a deeper understanding of the participants’ subjective experience of the phenomena and to describe their patterns of meaning, by interpreting their experiences and perspectives to develop the central or essential meaning from the participants’ shared experience, producing full and detailed data. A phenomenological design is suitable for this study as it studies participants in their natural setting and is able to produce a full and detailed account of the experience of the phenomena.

3.4. Population and Sampling Population. The population for the study was defined as a total set (or a larger pool) who possess specific characteristics in which the researcher is interested and from which units of study (events or individuals) are chosen (Strydom , 2005; Neuman, 1997). The population has important role in sampling – it sets the boundaries on the units of the study. Neuman (1997, p. 203) suggests that to define a population, a researcher must clearly state the unit of analysis, its geographical area and chronological limitation of the population.

The population for this study was defined as the patient cohort at the DR-TB hospital in Gauteng which has 266 beds. The selected population suited my study aims (Arksey & Knight, 1999; Strydom, 2005; Rossman & Rallis, 2003). The site was accessible and offered sufficient time for the study; it also fitted my interest as a researcher.

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Sampling. A relatively small sample of three patients with DR-TB was selected for the study. As the study approach was exploratory-descriptive and informed by a phenomenological design, the size of the sample was considered to be sufficient to produce full and detailed data and satisfy the goals and objectives of this study. Qualitative studies use relatively small samples and phenomenological research even smaller, to capture the depth and richness of participants’ experiences. They often provide a genuinely satisfying experience for the participants (Padgett, 1998). Patton (as cited in Strydom, 2005 p. 328) states that there are no clear guidelines in qualitative research about sample size, being influenced by the purpose of the study and its credibility.

Purposive sampling, a form of non-probability (non-random) sampling, which would elicit detailed and rich data, was used in this study. Qualitative researchers use non-probability sampling methods rather than a representative random sample that might give a less detailed data. Two types of non- probability sampling methods: theoretical or purposive sampling techniques can be used in qualitative research (Strydom, 2005, p. 328). Purposive sampling refers to a selection of a sample by a researcher based on the knowledge of the population, its elements and the purpose of the study. Purposive sampling in qualitative research is critical as it provides a clear criterion for selecting suitable participants who are closely connected and able to respond to the research question, thus creating a match between the sampling and research questions (Strydom, 2005; Rossman & Rallis, 2003).

The criteria used for sampling these three individuals from among the approximately 266 members of the population were that they had been in hospital for at least 12 months or more, were resistant to at least four anti-TB drugs, and had the intellectual and emotional capacity to explore the existential experience of long term hospitalization (LTH). This last criterion was assessed based on my knowledge of working in this hospital. I have worked long at this hospital and the patients are there long-term, thus I have a good understanding of most of the patients and was in a position to identify those who would best be able to provide an in-depth account of their experience of LTH.

Preparatory work for research, gaining entry and getting started. Access to the research setting was not a problem as I am an employee at the research site. Ethical approval was granted by the Higher Degrees Committee (HDC) in the Faculty of Humanities, University of Johannesburg. Permission to undertake the research was also obtained from the hospital CEO. Once the study was approved, the participants (interviewees) were recruited.

I chose the sample using my knowledge of the patients at this hospital. I met the potential participants individually before the actual formal interviewing. Conducting an informal interview

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 50 based on the brief of the intended study (See Appendix 1), I began by telling the participants that I am a student at the University of Johannesburg, and explained to them that the research was part of my studies. I explained my role as the researcher who wanted to learn about their prolonged hospitalization experiences. I explained the purpose of the research so that they clearly understood and were able to make an informed consent to participate. I invited them to take part in the research and discussed their interest and availability. The research information leaflet, containing a written study brief and informed consent (Appendix 1), was used to ensure that uniform information was given to all potential participants (Arksey & Knight, 1999, p. 69).

All three patients that I approached showed interest and motivation and volunteered to participate in the study. At the end of this preparatory meeting, verbal consent was obtained from the participants to participate in the study, but the signed consent was not done immediately. This was to give them time to think through the research information given out, to enable them to make an informed decision to take part in the study, avoiding subtle coercion. It was then agreed with the potential participants that the signed consent will be done before the interviewing, if they are still interested to participate in the study. The date, time and venue for the formal part of the research interviewing was then set.

The following criteria were used for selection of patients/potential participants:

o Three patients of both sexes and different ages.

o Participants were resistant to at least four anti-TB drugs.

o Participants had been hospitalized for DR-TB for at least twelve months.

o Participants had the intellectual and emotional capacity to explore the experience of long term hospitalization.

The purposive sample consisted of one female and two males, aged 20, 45and 65.

3.5. Data Collection Instrument and Method Data collection instrument. Henning, van Rensburg and Smit (2004, p. 70) state that planning for the interview is important and recommend that qualitative researchers plan their research interview accordingly as informed by the research design. Rossman and Rallis (2003, p. 175) add that planning interviews entails researchers thinking about how tightly they want to control questions or topics. Researchers also develop topics or questions that they wish to explore. Researchers therefore do this by identifying a few broad topics, framed as questions, to explore and understand the

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 51 participants’ experience of the phenomenon. Researchers however respect how the participants frame and structure their responses (Rossman & Rallis, 2003, p. 181).

I planned my interview schedule by constructing a single open-ended question, “Tell me about what is like for you to be hospitalized for such a long time in a DR-TB hospital.” This question was used as an opener to get the participants to tell their stories and to facilitate the flow of research. As this question was open-ended, it helped to ensure that the interview schedule was kept broad and open, allowing in-depth understanding and exploration of the research phenomenon from the participants’ subjective view, instead of being structured and standardised. Therefore data was collected through the use of an unstructured interview schedule (Appendix 5), which is common in phenomenological research.

The interview guide contained also a blank space for me to write down notes about the phenomenon under investigation, the interaction between the interviewer (researcher) and the interviewee (participant) and the unfolding process. I wrote notes after the interview about my emerging impressions, insights, emotional reactions, thoughts and questions about the phenomenon. Rossman and Rallis (2003, p. 196) refer to these sorts notes as “observer comments.” I avoided taking notes during the interview as this act can distract the interview flow.

Therefore the designed unstructured interview schedule was suitable for this study to elicit relevant and needed information, that is, the rich, detailed data about how the participant experiences the phenomenon, how they understand it and what it means for their daily existence.

Data collection method. In qualitative research, one-to-one interviews and focus groups are used as interviewing methods for rich data collection (Greeff, 2005, pp. 286-287). One-on-one interviewing is a prominent information or data collection method in qualitative research and particularly phenomenological research (Greeff, 2005, p. 286; Rossman & Rallis, 2003, p. 172). Also interviewing in qualitative research is important because it allows the participants to tell a story and in the process construct meaning of their experience; it thus allows the researcher to learn and develop knowledge about the phenomenon (Greeff, 2005).Qualitative interviewing is a goal directed conversation and not entirely unstructured, even though an unstructured interview schedule was used. I kept in mind my purpose in having this conversation and the existentialist theoretical framework that lay behind my study while conducting the interview, to ensure that we remained within the broad scope of the research purpose.

The main purpose of the interview is to enter the life world of the participants and to develop a rich and deep understanding of the participants’ subjective, detailed experience and meaning (Greeff,

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2005, p. 287, Rossman & Rallis, 2003, p. 180). Rossman and Rallis (2003, p. 180), further state that “talk is essential for understanding how participants view their worlds and it is through talking that researchers can discover and learn about the aspects of reality, that is, how they are experienced and viewed.” Thus interviewing the participants involves both the description of experience, and reflection on that description.

In this study, unstructured one-to-one interviews were used to collect data. The purpose was to explore and describe the experience of long term hospitalization due to DR-TB for DR-TB patients in hospital, in order to learn and understand the experience from the participants’ point of view. Rossman and Rallis (2003, p. 180) state that “interviewing takes the researcher into the participant’s worlds as far as they can (or choose to) verbally relate what is in their minds” and what they feel.

A single-session, in-depth, unstructured interview was conducted with each participant at a scheduled time and place. (Appendix 2 provides an example of an interview process from an interview with Dikeledi). The idea was to explore and understand the participants’ subjective experience of the phenomenon, holistically (Denscombe, 2007, pp. 174-175; Rossman & Rallis, 2003 pp. 97&175; Rubin & Rubin, 1995, p. 3). In depth interviews are long in duration, and detailed also, with great advantages – they allow the researcher to reach deep levels of knowledge and understanding about the phenomenon (Henning et al., 2004, p. 75, Rossman & Rallis, 2003, p. 180). The interviewer and the participant co-construct meaning (Henning et al., 2004, p. 57; Rossman & Rallis, 2003, p. 180). Moreover, I was careful to listen for what matters to the participants, hoping to learn considerably from them. In qualitative interviewing, the researcher listens closely to what is being said. This means that the researcher listens intently “to hear the meanings, interpretations and understandings that give shape to the worlds of participants” (Rubin & Rubin, 1995, p. 7). Henning et al. (2004, p. 74) say that interviews may be scheduled for specific times at specific venues. Each interview was audio taped, and I afterwards transcribed it verbatim, and removed any identifying information to protect the anonymity of the participants. Pseudonyms were used. Each interview lasted 60-90 minutes. Richards (2009, p. 37) says that audio taped interviews have to be transcribed into verbatim written format, and not cleaned up, to produce thick data from the participants’ first-hand experience.

When interviewing it was important to find a quiet space with minimal interruptions, in which the participants could feel their anonymity was ensured and feel comfortable and relaxed enough to explore their experiences and feelings. The group room at the hospital, which is out of sight and sound from daily interruptions and routines, was used to hold interviews.

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Before beginning the actual interviewing, I started by re-explaining that I was studying at the University of Johannesburg and that the research was part of my clinical social work Masters degree. The introduction to the study was reiterated, as well as ethical issues such as confidentiality, consent to take part and audio taping the interview process. They were informed that I might ask them for a follow-up interview if necessary; they did not object. They were also informed that they could stop the interview at any time without any prejudice (Rossman & Rallis, 2003; Rubin & Rubin, 1995). I then informed them that they might be referred for counselling after the research interview if necessary. The primary purpose was to allay their fears and reassure them of their safety and guarantee their anonymity. They were then asked to sign a consent form before the interviews began (Appendix 1).

An open-ended question, “Tell me about what it is like for you to be hospitalized for such a long time in a DR-TB hospital”, was used to encourage the participants to open up. Verbal and nonverbal cues and prompts were used to formulate follow-up questions, and encourage participants towards further disclosure and engagement at a deeper level as far as they could (Rossman & Rallis, 2003, p. 180). Qualitative interviewing skills, such as questioning, probing, prompts, elaboration, clarification and reflection, were employed. According to Henning et al. (2004, p. 75), Padgett (1998, p. 60) and Rossman and Rallis (2003 p. 173), such cues are important as they suggest avenues and direction for further exploration by the participant. The following is a brief example extracted from the interview with Goitsemodimo:

Line Speaker Verbatim Coding #107 Goitsemodimo I don’t see.... When it time for treatment, you Painful to take feel somehow – you think for how long I treatment for such a have been taking this tablets, I have been long time taking this tablets for a long time, and those Wondering for how tablets are many, you see. You end up long the treatment thinking a lot of things. will last Thinking a lot #108 Student Things like....

Active listening and an attitude of openness, acceptance and respect were adopted; every perspective is truthful and valuable in its own right (Descombe, 2007, p. 79; Rossman & Rallis, 2003, p. 182; Rubin & Rubin, 1995, p. 17). My part ensured that ‘what was relatively familiar’ was discussed, leading to the state of ‘not knowing’ and bracketing off presuppositions of the phenomenon, focusing on the participant and his/her lived experience and interpretations (Rossman & Rallis, 2003, pp. 33 & 191). The purpose was to remain faithful to the experiential material gathered, and identify the lived experiences and individual views in an authentic form (Descombe,

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2007, p. 78). This is also called reflexive interviewing, as the collection of data is not passive, but the researcher is actively involved on one-to-one basis with the participant (Rossman & Rallis, 2003).

Both the interviewer and interviewee are involved in the relationship and act as co-participants in the research process – they influence each other as they co-construct meaning (Flick et al., 2005; Henning et al., 2004, Rossman & Rallis, 2003). I was cautious to ensure that the interviewing did not turn into a therapeutic session. Greeff (2005, p. 299) warn that since one-to-one interviews involve personal interaction between the researcher and the participant(s), the researchers must avoid the risk of changing the qualitative interviewing relationship into a therapeutic one – the aim of qualitative interviewing is to learn from the participants, not treat them. However, as this topic is sensitive and complex, involving intensely subjective material, I was aware of the high level of sensitivity, gentleness, acceptance and respect needed in the interviews, which drew extensively on my clinical skills. The focus and appreciation was that participants were the ‘agents’ of their own situation and that I am an outside learner (Denscombe, 2007, p. 78).

This approach was important because it enabled the participants to feel secure, trusting and at ease in narrating their deep experiences. As a researcher, I suspended my own beliefs, presuppositions and personal epistemologies, as well as my own life experiences, to ensure that every aspect of their information was received with openness and respect, and treated as true and valid(Denscombe, 2007, p. 79; Rossman & Rallis, 2003, pp. 10 & 33). This ensured I remained unbiased. This open, involved, humanistic approach exposed in-depth experiences and meanings and uncovered new and significant material.

3.6. Data Analysis De Vos et al. (2005, p. 333) described qualitative data analysis as a process of organizing large amounts of data gathered, and in the end derive emergent meaning. It involves a repeated act of reading through data, of sorting, categorising, grouping, re-grouping and thematising data into manageable and meaningful segments. The aim is for the researcher to be immersed in the research data, and thereby transform data into findings (Patton, as cited in De Vos et al, 2005; Rossman & Rallis, 2003). The data was analysed using De Vos et al.’s (2005) data analysis spiral, which runs parallel to the analysis method emphasized by Kvale and Brinkman (2009, p. 190) and Rubin and Rubin (1995, p. 226). The analytic spiral steps include managing and preparing the data for analysis, repeated reading of the transcripts, writing memos of emerging ideas, coding data and testing emerging ideas against the original data and literature. The aim was to look for themes,

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 55 patterns, ideas, concepts and meanings of participants’ experiences. The analytic steps were used to develop full descriptions from the data.

Preparing the data (analysis as ongoing): A pre-determined thematic framework, based on existentialist theory – Yalom’s (1980) four ultimate concerns – was used to guide the content analysis. The purpose was directed towards emergent learning. Rossman and Rallis (2003, pp. 270- 271) says that qualitative data analysis at base can be considered as the researcher’s emerging understanding of what he/she is learning from data. Therefore, this emergent learning is the hallmark of qualitative research – it means that as a researcher you learn as you go. Such learning involves how you handle, organise and interpret data for communicating the essence of what the data reveals.

Preliminary analysis took place in the process of transcribing the interview as I started to observe and identify the key ideas and concepts that would later be categorised as emerging themes. I highlighted keywords or phrases in the process of transcribing. I then wrote my own ideas, reflections or possible categories that occurred to me during transcription, using endnotes. Patton (as cited in De Vos, 2005) urges the researcher to write ideas or possible categories that occurred in the margins of the transcripts. The following is an example from interview with Moagi.

#22 Moagi Of course this is not a place to stay. Now, you will knock off work and go to your house, what about me? I am here [in hospital], am sleeping here,4 yet my things are getting destroyed even more. The raining season has ceased for now, and I should be fixing a lot of things5 at home. But now I am here. I used to work as a builder- people would come to my house and hire me to do building work for them. Pause. I am not interested about this place in any way. I fell when I was coming to you. A small stone tripped me and I fell. What kind of a thing is that?6

Step 1: Read through the transcript. Once the interview was transcribed, I read through it a few times in order to sink into the person’s experience. I scribbled notes and highlighted key phrases. Reading the interview several times creates familiarity with data and the sense of the picture as a whole (De Vos et al., 2005).

4 To me sleeping signifies the act of being stagnated/inactive/still/immobile. It can also be referring to the passing time?? 5 To me this statement, I should be fixing a lot of things at home, insinuate the act of being active and doing something in life. but now he cannot do that because he is restricted in hospital – his ability to choose, take decisions and act, and to be in control of his life are taken away from him by being kept in the constricting hospital environment. He has needs and desires to do things for himself but he cannot do them - he is limited/restricted. Noonan etc. talks of the hospital as the restricting environment that, (over time) can deplete a person bit by bit and affecting every sphere of his/her life. This feels as a theme of freedom, but it can also be that this is pointing at the anxiety that is arising from his awareness of the diminishing freedom, which thus leads to meaninglessness in life. 6 Feels he is questioning what is going on with him and or is gaining awareness of his vulnerability, the deteriorating strength in his body/ functionality An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 56

• Step 2: Line-by-line-coding. Coding is the formal representation of categorizing and thematic analysis (De Vos et al., 2005, p. 338; Rossman & Rallis, 2003, p. 284). Rossman and Rallis (2003, pp. 285-286) further state that, “coding entails thinking through what the researcher thinks as evidence of a category or theme. Thus a code is a word or a short phrase that captures and signals what is going on in a piece of data in a way that links it to some general analysis issue.” The researcher identifies concepts in the data and assigns codes in an attempt to categorise data and to start extracting possible themes at a later stage when seeing and understanding the patterns and explanations. The aim is to retain data and learn from it through reading and reading (De Vos et al., 2005; Richards, 2009; Rossman & Rallis, 2003). Coding encourages hearing data and helps the researcher to analyse data (Rubin & Rubin, 1995, pp. 238 & 240).

Qualitative researchers often rely on data coding methods that serve purpose for their research. Coding methods vary and the choice lies with the researcher as to what works for him/her and what will help to analyse data (De Vos et al., 2005, p. 338; Rossman & Rallis, 2003, p. 286; Rubin & Rubin, 1995, p. 238). Therefore coding can be done on anything which the researcher thinks may later help him/her to analyse data. This is done by carefully reading through the research material as many times as needed; marking any likely concepts; and assigning them codes, for example a colour, a number or a label. I chose to use line-by-line coding, as this method of coding enabled me to be immersed in data, paying close attention to what is going on to the piece of data and attempting to link it to the general analysis of the investigated phenomenon. Also coding, data can bring new understanding as data are evaluated for their usefulness in making clear the questions explored.

I immersed myself in the data by reading and re-reading the transcripts. After more reading I then analyzed the data using line-by-line coding. I highlighted key phrases or words (verbatim texts) which captured the essence of the participant’s experiences – powerful and evocative phrases. I wrote the codes in the coding column, next to the relevant text. As I did so, I tried to stay close to the participants’ experiences so that the codes did not become too abstract, theoretical or disconnected from the participant. An example of line-by-line coding from the interview with Dikeledi is provided in Appendix 2.

Step 3: Memos. I wrote memos when certain codes triggered my own thoughts and questions, as well as links to Yalom’s framework, paying attention to recurring phrases and words, and making sense of the data. I wrote my own reflections and asked relevant questions about the data, using

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 57 words endnotes and/or comments next to the relevant text. An example from the interview with Moagi follows to illustrate:

Line Speaker Verbatim Coding #22 Moagi I hate the hospital so much; I don’t want to hear Hate to be at the hospital anything about the hospital, I don’t want to hear Sick and tired / fed up of anything about it at all. the hospital Fed up of the hospital7 #24 Moagi I hate the hospital with all my heart; there is nothing Hate the hospital good about it. What we are doing here in hospital completely we can still do it at home. I mean we can still drink No good thing about the these tablets at home. But now, we drink the tablets hospital here and afterwards we stay the whole day8doing Can still take treatment nothing. But if I was at home I was going to some while at home9 home duties, for instance, do repairs in the house or In hospital solely for around the yard where the need is, or I can take a treatment spade and do garden work. Can still take treatment NB: note that the patient is telling the while at home experience/narrative which is happening to him Stay and do nothing in the currently and that which he does not like or is hospital unhappy about. Immediately, after that, he states Do home duty10 what he needs, wants or desires to see happening in his life

This process also assisted in creating codes/categories at a later stage and also in pulling together and grouping such codes, as illustrated in Appendix 4.

Step 4: Thematic analysis 1.I continued working with the data, reducing it to meaningful patterns, categories and themes. I repeatedly read it and then developed categories and identified the relationships and differences between the categories, with reference to the texts. I went through all the initial codes looking for those which seemed very significant or appeared frequently, to grasp what the participant was actually saying and how this related to the topic to further my understanding. I re-read the data for specific themes and meanings, deciding what was relevant and what could not be used. An exemplar is from interview with Moagi, as provided in Appendix 5.

7 He is dissatisfied/disgruntled/unhappy about being in the hospital – Yalom states that when people cannot get meaning in life, they get annoyed, dissatisfied and helpless. N.B: I HAVE DISCOVERED THAT MEANING IS CENTRAL TO EVERYTHING, AND EVERYTHING ELSE [ISOALTION, FREEDOM AND DEATH] EMANATES FROM IT; THAT IS, THE QUESTION ABOUT THE MEANING OF LIFE OR THE MEANING OF OUR LIFE, GIVES RISE TO THESE OTHER ISSUES ABOUT OUR LIFE OR LIFE. E.G . THE QUESTION ABOUT MEANING IN LIFE MAY CAUSE ME TO BE AWARE OF MY ISOLATION ETC. AND THUS EXPERIENCE A SENSE OF MEANINGLESSNES FROM THAT SOURCE. 8The passing of time? 9Perceives the act of being kept in hospital for treatment sake as useless and uncalled-for (mindless, undue). Maybe that it is the reason he said that he is ill treated here. Meaninglessness theme. 10Sense of engagement [desire and will to be engaged with every day process of living, by carrying out his conventional tasks, the action/act that shows responsibility and being in control. The theme of freedom and meaningless applies in this context/ experience- the patient here is complaining about meaninglessness in life which is having its roots in the awareness of freedom that is fading, hence Yalom states that the meaninglessness is contaminated [p. 464]. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 58

Step 5: Narrative distillations. This was followed by writing detailed narrative summaries of each participant’s experience, using the created themes/categories and integrating each person’s actual words as much as possible. I described this as the ‘first voice’11 of the participants (person-centred analysis). I paid attention to key words and expressions to remain faithful to their experiences and ensure authenticity, trustworthiness and rigour. Geertz (as cited in Rubin & Rubin, 1995, p. 8) states that “thick description, rooted in the interviewee’s firsthand experience, forms the material that researchers gather up, synthesize, and analyse as part of hearing the meaning of data.” Complete narrative distillations for the participants, in first voice, are provided in chapter 4, section 4.2.

Step 6: Thematic analysis 2.I immersed myself in the data again and sought to interpret the themes and meanings across the participants, to gain more insight into salient themes and hidden meanings and eventually produce a coherent story of what was important and necessary to the participants. I wrote the main themes, summarising them and aligning them to the relevant literature to bring a deeper understanding of the experiences. This is called the ‘second voice’, because it is a step removed from the immediate felt experience of the participants and because it involves aggregating themes across participants, thus at a slightly more generalised level. Complete thematic analyses are provided in chapter 4, section 4.3.

Step 7: Linking to Yalom’s four key themes. I continued reading the transcripts, with Yalom’s existential framework foregrounded, to understand the emerging themes/categories. Relevant texts and themes were then clustered under Yalom’s existential themes. I wrote up the meaning of the data/interview in a ‘third voice’, meaning a voice that is even more abstracted than the ‘second voice’ and in line with a particular theoretical framework. This served to develop the relationship between the second and third voice to distil the essence of the participants’ experience. These analyses are presented in chapter 4, section 4.4.

3.7. Rigour and Trustworthiness Establishing rigour and trustworthiness for qualitative is essential for qualitative study and should be taken seriously and considered carefully. This is important because the rigour and applicability of each qualitative study should be assessed and confirmed (De Vos et al., 2005; Lincoln & Guba, 1985; Padgett, 1998; Rossman & Rallis, 2003). I have chosen to use the concepts of rigour and trustworthiness for my qualitative research (De Vos et al., 2005). These correspond to the concepts of reliability and validity in quantitative research.

11The terms and concepts ‘first voice’, ‘second voice’ and ‘third voice’, came from my supervisor, who learned them from Prof Rex van Vuuren, a highly experienced and published phenomenological researcher and psychologist. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 59

The data collection process and analysis in qualitative research had to be rigorous and transparent. Thus, Lincoln and Guba (1985) describe four components of trustworthiness and rigour in qualitative research, and these were established in this study. Every qualitative study must address these issues.: credibility, in which subjects are accurately described, and the method and findings can be trusted through a rigorous process of inquiry; transferability, in which the study’s findings can be transferable or generalised to another setting or group of people, and also by which triangulation of multiple sources of data supports the research; dependability, whereby the findings are not determined by the biases and the perspectives of the researcher, but accurately reflect an external objective reality world; and confirmability, which asks if the data confirms the general findings and establishing confidence in the truth of data findings which are solely based on data.

We need to build rigour and trustworthiness from the beginning of the research. So, I began establishing the essential rigour and trustworthiness by ensuring that the research question was clear and relevant. The data collection and analysis process were carefully considered, written and presented transparently for authenticity and credibility.

According to Steinmetz (as cited in Padgett (1998, p. 92), “a trustworthy study is one that is carried out fairly and ethically and whose findings represent as closely as possible the experiences of the respondents.” In this study, trustworthiness was attained as the study findings illustrated the participants’ experiences and meanings with no visible indication of the researcher’s or respondents’ biases. This is supported by the fact that I had a prolonged engagement with the participants through conducting lengthy and in-depth interviews with them. I was cautious about over-identifying with the participants. This process contributed to the confirmability and credibility of the study.

I battled to establish, maintain and increase trustworthiness and rigour as there were a few challenges, for instance through the use of member checking. Member checking is important for qualitative research and it ensures credibility. There were two phases of successful member checking. Firstly I used informal member checking as I proceeded with the interviews, probing and summarizing as a double check. The following is an example extracted from data where summarizing was used:

#97 Goitsemodimo The thing that I am imagining is that when I am dead I will no longer see what is happening (how things are). #98 Student It is as if you are at times thinking that your results are persistently positive and wonder silently as to where you will ultimately end.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 60

#99 Goitsemodimo No, I am not thinking about where will I end or maybe it was going to be better if I was dead, but instead I wish that I can just die once, I wish that I can just die because I don’t see what I am living for. But after sometime such a thought will fade away, and you become free. You see.

Secondly I used formal member checking. Once I had completed interviewing, transcription and narrative summaries in the first voice, I went back to the participants individually and gave them a summary of the interviews, so that I knew what information I had gathered and checked with them. I kept brief notes. Each session lasted 15-30minutes. This process is important as it can increase the credibility of the research (Padgett, 1998; Rossman & Rallis, 2003). The participants felt that the summaries reflected their experiences. They were grateful and hoped that their shared experiences will help or be lessons to others. They were however looking for solutions to their problem, hoping to be helped with early discharge from the hospital.

However the third and final phase of the formal member checking was not done because of the challenges encountered. Through member checking, all the participants would have been called in by me to share with them what data was gathered and my interpretation of data. The purpose of this process allows the members to hear about the data and given the opportunity to comment whether the information collected fits what they said or not. In this way they use their perspective to verity the researcher’s interpretations about data (Padgett, 1988, p. 100). By the time I had the completed data analysis, approximately fifteen months after the data collection, the participants had all been discharged. Although they were telephonically invited to come for member check, they could not attend. The challenges with member checking are acknowledged in literature (Padgett, 1998, pp. 100-101). It is acknowledged that member checking is not always easy and participants might not attend for different personal reasons. Where it is not possible to carry out member checking, the researcher must use what he/she has from the interview data. Padgett (1998, p. 101) says that member checking is one of the ways of increasing trustworthiness of the qualitative study.

It is clear, however, that reasonable measures were taken to increase trustworthiness and rigour. The recommended processes for conducting a qualitative research were followed to ensure that the research question, data collection instrument, data collection and analysis process are understandable and relevant. This increases the probability that it could be replicated in other areas, such as other DR-TB hospitals in South Africa and perhaps also elsewhere, and yield findings roughly congruent to this original study. Therefore, the findings of the study are dependable and probably transferable (De Vos et al., 2005; Rossman & Rallis, 2003). I have also used other methods to raise the trustworthiness of the study, particularly prolonged engagement. De Vos et al. (2005) and Rossman and Rallis (2003) recommend prolonged engagement with data. Therefore, I

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 61 decided to transcribe each interview in full myself and to remove any identifying information to protect anonymity. This initiated in-depth, prolonged engagement with the data, and increased trustworthiness and rigour. Also the method of data analysis adopted encouraged immersion in data through reading and re-reading of the data as necessary.

3.8. Ethical Considerations The following important aspects of research ethical issues were considered and upheld during the course of the study.

Avoidance of harm (Strydom, 2005, p. 58). Since the topic was sensitive and having the potential to evoke tremendous emotional pain for the participants, I as a researcher informed the participants that they may be referred for counselling after the research interview if they have the need following the interaction. This was chosen to be done because it is recognised that the participants may experience emotional distress after qualitative research interviewing. I also informed each participant that participation is voluntary and that they could withdraw from the interview at any point without prejudice. Also the participants were informed that they may be asked for a follow-up interview when a need arises, to which they did not object.

Informed consent (Strydom, 2005, p. 59).The participants were provided with accurate and complete information about the study during a preparatory interview with each. This was necessary so that the participants could fully understand the purpose and details of the study so that they could in the end be able to make an informed voluntary decision about their participation. Written consent was obtained, but only in the second contact when the interview was conducted, allowing a ‘cooling off’ period in which they could have decided to decline participating.

Violation of privacy/anonymity/confidentiality (Strydom, 2005, p. 61).Care and caution was taken to ensure that that the identity and privacy of the participants was protected, and managing their information in a confidential manner in such a way that they could not be identified by others. This is important and Strydom (2005) emphasise that it is the obligation of the researcher to protect confidentiality and anonymity of the participants.

3.9. Conclusion This chapter described the field of qualitative research. It described the qualitative research process adopted in this study as suited the research question, goal and objectives. This chapter continued to describe the process of qualitative data collection and analysis that I followed. This process included data collection through unstructured interviews, the recording of data, followed by the

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 62 organization and analysis of data using De Vos et al.’s (2005) data analysis spiral. Rigour and trustworthiness were increased by using methods such as member checking and prolonged engagement with data. In the next chapter, the focus will be on presenting and discussing qualitative data findings.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 63

Chapter 4: Findings and Discussion

4.1. Introduction This chapter deals with the experiences of DR-TB patients, who have been hospitalized for a long time and have had to confront existential problems with devastating and complex effects on their lives and require adequate and relevant social work and care. Their experiences were very new to them, overwhelming and confusing. They experienced great internal conflict. Yalom’s existentialism discusses how the confrontation with the givens of existence is important and will happen to each person during life; unless uncovered, one’s existence will be frustrated, leading to pain and great confusion as well as an inauthentic existence (Yalom, 1980).

The participants’ experience of their prolonged hospitalization will be in three parts. First a person- centred analysis, highlighting each experience in the first voice. It is vital to stay as true to their accounts as possible, and provide the context for the emergent themes. Second, a theme-centred analysis of the findings and discussion of the six central themes, linked to the relevant literature (for broader understanding) in the second voice. Theory-centred analysis follows, linking the findings and discussion to Yalom’s theoretical framework, in the third voice. This takes the data to a higher level of abstraction and generalization; illustrating the importance of understanding, identifying and effectively managing the concerns rooted in a person’s existence and the resultant conflict.

4.2. Narrative Distillations: Person-Centred Analysis (First Voice) The narrative distillations are intended to capture the essence of the experience of long term hospitalization for each participant. I have used their own words as far as possible and written in the first person, but distilled and structured the narratives in light of the themes to be presented in section 4.2.

4.2.1. Narrative Summary for Dikeledi12 My name is Dikeledi. I am 20. I lived in Johannesburg with my mom, elder sister and my small son in a rented flat. I came here a year ago, after being diagnosed at the local clinic with MDR-TB. I knew nothing about this hospital. The nurse at the local clinic didn’t explain anything about this hospital, except to tell me that I had to be admitted for further treatment. I agreed but I didn’t know what would happen. I felt awkward on admission and thought I would die because I wouldn’t cope.

12Note that pseudonyms are used in the dissertation. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 64

I even told my family I would die if I stayed a month. One month passed, then a second one and before long it was five months. I realized I was truly alone and there was nothing I could do about it. Although I don’t like being here at all, I console myself by saying I’ve come here to get life. It’s not easy; I try to live one day at a time.

I’m looking to the future – I’m hoping I’ll leave here cured, and most importantly not infect others. The worst thing would be to have my family admitted or have someone close to me suffering from it too. I’d blame myself because it would be obvious that I had infected them. I would have to live with the guilt forever. I also fear that people in my neighbourhood will talk about me having DR- TB. That’s why I endure the pain of being here to protect my family mostly, and the community as well. It’s very important to keep this focus because I have something to count on and look forward to. Time’s moving fast. Every week I’m always counting, I count, and I count, hoping for a miracle. It’s very painful and I don’t know how to explain my great pain. I’m not able to do what I want or the way I used to. I can’t raise my son and be there for him, especially during bad weather or when there’s a crisis in the family. I hurt and cry a lot. I have to trust that my family’s taking good care of him. If I don’t have airtime, I cry and cry. My family’s not around and I’m used to them – I miss my own home and want to be there, but I can’t because I’m in hospital. I can’t choose meals but am forced to eat hospital food daily whether or not it’s appetizing or not my favourite. It’s seriously painful and frustrating. We’re imprisoned – we can’t go out and interact with other people. I feel tired of being here. I feel lost as if I’m at a place where I’ve never been before, and there are no people around me –all the people have gone and I’m alone, enclosed by hospital walls. I feel empty.

Nevertheless, not all the days are the same – I’ll wake up and laugh and on others I’ll cry, but I don’t stay sad all the time. Sometimes I’m right and normal, neither happy nor sad, but in the middle and I remain that way. I have many bad days when I feel pain and emptiness, not knowing what to say, do or expect. Sometimes when it’s morning … I don’t know myself; I’ll look all around and wonder if it’s me; yes, it’s me and I’m still in hospital. I keep wondering and asking many questions – Why aren’t I cured? Where is the treatment I’m taking going, because I’m not cured? What’s the treatment doing inside me? I wonder if it’s damaging. Do I really have DR-TB or not? When am I going to be discharged? What will happen if my sputum culture results are persistently positive? I wonder if things will ever be okay. For instance, if I develop a rash I begin to worry if it’ll go away or if my hearing deteriorates, will it come back? I have these questions all the time. I try to find answers, but they all remain unanswered, and I feel more and more confused. Every day I’m afraid and not afraid at the same – I’m in between.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 65

Worse still, there’s no change in my condition; my sputa culture results are persistently positive. I feel bored when everything’s the same every day, every week, but I feel nothing’s wrong in my body. When I look at myself, I see I’m well, but the doctor tells me the sputa culture results are still positive, which means that the DR-TB is still active and I’m infectious. I have to wait for another sputa result which may take six to eight weeks. Then I’m disappointed. My worst days are the doctor’s consultation during a general clinical ward round. It’s very challenging as I have so many thoughts the moment I see the doctor entering the ward and during the entire consultation. What’s the doctor going to say today? What news is she bringing me? As usual she’ll let me down again; she’ll tell me the same. My sputa culture result‘s still positive and I have to wait for another one. I’ll feel disappointed as I have to wait yet again, and cry a lot to relieve the pain inside. I’ll shortly accept the situation, let it pass and start to look forward to the next week.

I let everything pass, good or bad, because it has no value. The days are going by, and I’m looking to the future. I tell myself, wait and see what happens next week or after six or eight weeks. I keep saying maybe; maybe next week, maybe the following week, maybe next month, maybe the following one. I keep counting days and don’t get tired. I count, I count, I count.....Maybe, maybe. I hope again and focus on the future, not looking back at the bad things that have passed, and becoming stressed.

I always count because I’m expecting the doctor to tell me one day that I’m cured. I keep hoping… at the end everything will pass, no matter how discharged DR-TB patients react or continue to pass odd and silly remarks like, Are you still here?, or they still don’t want to let you go? Such remarks make me angry; they were here once and understand how things work but now they’re discharged, they act as if they’ve jumped over this place. It doesn’t mean I like being here, or have chosen to be here. I don’t have an option, but finally this will pass.

4.2.2. Narrative Summary for Goitsemodimo My name is Goitsemodimo. I am 45, a single man from a township in Johannesburg. I lived with my parents and sister prior to hospitalization. I came here many months ago with MDR-TB which later progressed to XDR-TB.

When I came here, I was sick – I was coughing a lot, unable to walk, get out of bed or stand up; it was even difficult to talk. I was very bad. In time I improved. I’ve now received the life I came for but it’s not enough. I’ve stayed here a long time and my condition’s still the same; my sputa culture results are still positive. This hurts; I’m tired of being here. I‘ve been treated for a very long time,

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 66 and it’s enough. I totally don’t want to be here, but I’m enduring because I’ve seen what kills patients and I totally don’t want that to happen to me.

Many patients kill themselves by their behaviour – they abscond every weekend and come back the following week; some don’t come back at all and stay at home without treatment. In some cases they come back when they’re too ill. Others will go out on pass outs and return much later when they’re sick, or else they don’t return at all and stop treatment. Some patients stay for 7, 9 or 12 months, but stop taking their treatment; others stop after being discharged. They too will come back to hospital when they’re very sick and die here. These incidents happen week after week

I want to leave here so much, and I feel bad every time other patients are discharged, on a pass out or when my visitor leaves, and I have to stay behind. I wish it was me going out. These thoughts will fade. I go to sleep and when I wake I’ve forgotten it all. I then accept I’m not fit to be discharged. Certain days I feel somehow, I cry, I feel somehow, and it goes on. I end up thinking about what other patients do every week to get out and think maybe I should do something as well. I quickly realize I would be doing wrong which will kill me in the end. Such thoughts will pass and I won’t think that way anymore.

I tell myself: I’ll stay in hospital until I see what will happen and where I’ll end. I have to wait for negative results because then I know I’ll go with treatment. My heart will feel free and I’ll be thankful to God that things are eventually right. At least I’ll be happy and free. I’ve seen how treatment is important and I won’t stop taking it post discharge. It’s helped me, it will take me out of here and it will keep me alive.

All I want is to get out of here. When I’m discharged, I’ll know I’m free and will be completely free – I’ll be able to live with other people, I would be happy with my family and support them; I’d find piece jobs and be able to buy anything I wanted in my own time, I’d buy liquor and drink with my friends. Even if I’m discharged, I won’t really be free – because I’ll have to continue my treatment. That’s why I’m not truly happy – I’ll have to continue with it until, until, until. I’ll also have to come for routine check-ups. The difference is that I’d be able to see many different things.

Every day is just the same – I have to eat porridge, make my bed, drink tea and take tablets. If it is the doctor’s round, she will come, if I have an appointment with the social worker I’ll go, or if it’s my review date at the HIV/AIDS clinic I’ll go. Then I sit and do nothing, or walk to other medical wards to be with other patients. Later I go back to my ward, watch TV, eat, and drink the tablets and sleep. That’s all I do. I feel bad because I’m not free. I can’t go to town or any other places. My

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 67 family usually visits once a month, but at times they don’t because of finance; then I’m without the things I need and have to eat tasteless hospital food.

I end up wondering how they are and feel that I should be the one who’s doing this and that for them. I can’t. I’m badly affected by the long time I’ve spent here; I’ve lost a lot of time. I totally hate this. If I was outside, I would’ve progressed, I would’ve done many things for myself and my family; I would be employed, married, own a house and a car. I just stay here and do nothing. My life is standstill.

When it’s time for treatment, I feel somehow and think about the long time I’ve spent here and the many tablets I’ve taken. I also worry a lot that my sputa results are still positive and I’ve been drinking the treatment a long time without change. It hurts to stay here so long without knowing what’s happening. I ask many questions; why do I have to stay such a long time and my results are still positive? How come? Where’s the problem? I have no answers. Maybe there’s something wrong I don’t know about. I think it shows there’s a God, Only God knows; He’s the one who has brought us on earth. Even the doctor doesn’t know, although she can say it’s like this and that. She’s also from God. It hurts so badly and I end up knowing nothing; I imagine when I’m dead, I’ll no longer see what’s happening.

I also feel hurt when the doctor comes. I’m always expecting she’ll tell me good news, something good about the results that I’m improving and my sputa results are negative, and I can go home. I’ll be happy and hopeful. Instead the doctor will tell me my results are still positive and I should continue treatment and wait. I end up dying. It goes just like that and just like that still. I can’t see what I am living for.

I feel I’m going back. I’m going nowhere, despite having taken the treatment so faithfully. My results are always positive. I can’t see any future. I wish I could just die, it would be better because then I won’t see anything. I’ll rest. When a person’s dead, he’s dead and can’t wake. I get terrified when I see other patients dying. I’ve seen many things, good and bad happen here. Some have inspired me, others have scared me, but I realize people kill themselves by not taking the treatment.

4.2.3. Narrative Summary for Moagi My name is Moagi. I am 65 unmarried and worked as a builder before I became ill. I lived with my mom and siblings in a township in Johannesburg before my admission. I was admitted months ago, having been told by the nurses at the local clinic that I needed to come here to get injections for TB for 56 days, then I’d be discharged.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 68

Many days have passed, many more than 56 days; I’ve been here for two years because my condition hasn’t changed and my sputa results are still positive. I don’t understand why the doctors are keeping me so long, as it’s obvious that their treatment isn’t curing me. They keep telling me I’m infectious and can’t mix with other people and that they want still more tests. It’s not necessary for me to be here; it’s a waste of time. I’m really ill-treated because I can’t go home, where I could still drink these tablets the same as I do here. It’s terrible because all I do every day is to drink the tablets and then spend all day doing nothing. I sit doing nothing and wait for food. I eat, sit and do nothing, wait for the next meal, eat again and sleep.

I feel I’m not different from a prisoner; I’m pulling an iron leg like a chained prisoner. I can’t go home. I can’t do what I want. When I’m home I can do chores, but here I sit and do nothing; there’s so much I could do outside. I used to work as a builder, had my own money and was able to maintain myself. I’m no longer able to work as I’m here – I sleep here and have spent so many months in bed doing nothing. It’s terrible depending on others. I have to wait for people outside to do things and bring stuff; I know I could do things for myself.

I’ve spent two consecutive Christmas in hospital and my medical condition’s still the same; I can’t imagine spending a third Christmas here. I want the doctor to discharge me, I’ve been here two years, they must just let me go because I’m like a prisoner, I can’t do anything; I ask for discharge, and they refuse. My neighbours and my family don’t understand why I’ve been here so long. They ask, when are you getting discharged? What are you doing in hospital? Such questions make me so angry because I’m still here and I myself don’t even know what I’m doing here or when I’ll be discharged. I’ve had enough. All I want is to go home to fix things and put them in order. I am looking forward to this.

It’s disturbing being so long in hospital; I’m in jail, I’m arrested, but I don’t know why. It’s better in jail because then you know the crime you’ve committed and when your sentence is ending, but here I’m told nothing. I’ve lost too much time and could have done a lot outside. I could have built two houses, not RDP ones, but proper houses. My life is standstill. I’m not at all happy here. There are no Ndebele, there are only a very few older patients. I feel strange, as if somebody drove a lorry around and picked up many different people off the streets and dumped them here. These people talk among themselves and I have no one to talk to; I get stressed because I can’t talk to them, so I end up sleeping during the day.

Most patients come here and get discharged soon. I’m very stressed and disappointed when they’re discharged before me. When am I getting out? Why am I staying here? Why am I a captive? I sleep, but can’t rest; I think all the time. I don’t want to be here at all, I want to go home because my

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 69 possessions are left unsupervised and getting damaged and I worry how I’m going to fix all the mess. I don’t know what to do or say, and what to put together, because my family’s not at all concerned about our home, and that I’m here in hospital and suffering. All the troubles and suffering are on my shoulders; they’re not suffering or stressed, I’m suffering and I’m alone. I don’t understand why they’re doing this – I ask myself why they’re not worried and why they’re not visiting me. I realize they’re leading a cosy life and have abandoned me, despite me having raised them with love and care.

I realize my family was just pretending to care and love me, but they only wanted my money. That’s extremely painful as I’m alone now, and have no one to support me; I have to do everything for myself. My mother and two siblings died suddenly while I was here and I couldn’t attend their funerals. They are gone, now I’m alone and have no one. When I think of the mess I’m in, I wonder when I’m going to be discharged. Who’s going to help? What am I going to do? My mind becomes so upside down, and I go to sleep. People say go to hospital and you’ll get help, but there’s nothing good here, although it relieves bodily pains. I’m still coughing although I’ve been taking the tablets for two years so nothing has changed. I hate hospital because it has abused me. I’m no longer able to do what I did in the past and my body is in the shabby state. I have to be helped to walk because I fall easily and don’t have the strength any more. I’m also partially deaf in one ear; I’m no longer myself.

4.3. The Experience of Long Term Hospitalization: Thematic Analysis (Second Voice) The previous section presented, in ‘first voice’ format, the distilled narratives of the three participants. The findings in this section are a step removed from the participants’ individual narratives, hence are referred as ‘second voice’, and are based on theme-centred analysis, interpreted in the light of the literature reviewed in Chapter Two. There are six themes. These help us understand the experience of long term hospitalization and the effects on the person/patient. They also form a preliminary link to Yalom’s existential framework which will be presented in detail in section 4.4. The six themes are:

1. Anxiety, hospitalization and death 2. Time 3. Isolation 4. Loss 5. Stigma (social pain) 6. Loss of perspective (living with endless uncertainty)

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 70

4.3.1. Theme 1: Anxiety, Hospitalization and Death Hospitalization evoked anxiety and emotional distress throughout the participants’ stay. They recounted fear, worry and uneasiness from the moment they came to hospital. They were uncertain if they would ever survive/cope. Dikeledi (#91)13: “When I first came, I said if I stay for a month I’ll die because I won’t cope.”They were doubtful and hesitant, and had no confidence in the hospital. Moagi (#24):“I hate the hospital with all my heart; there’s nothing good about it.”One participant perceived the hospital with relief, calmness and gratitude as he had been very ill and needed help. Goitsemodimo (#132): “When I came here I was very sick. I’m thankful I was helped until I got strong. If I had refused to come then, maybe I’d be dead by now.”

Ordinary hospitalization itself is stressful and can cause anxiety and other mixed emotional reactions, but TB hospitalization is usually longer and most patients are aware of this. Many regard hospitalization with fear, worry, unease and doubt; because their admission confirms that they are indeed sick and that prolonged hospitalization cannot be avoided. It is difficult and painful being sick and part of the totally new and unfamiliar world of the sick and the patient has to adapt. The very strangeness may cause anxiety (Field, 1967; Noonan, 1981; Parry, 1989; Radley, 1994; Wilson-Barnett, 1979).

The participants complained of the difficulties and challenges of being long in hospital, but they persisted as they wanted to be cured and hoped for an early discharge. Goitsemodimo (#17): “It’s enough; I’ve stayed for a long time. I can see ... I’ve improved and feel better now. I was very bad ... when I came here. (#55) I had side effects from the treatment ... I vomited, vomited every time ... until my body got used to it. I then realized that this is my thing.”Being aware of their medical state and that of fellow patients was a comfort as they gradually accepted and adjusted. Dikeledi (#39b): “Most of the time I deny I have this disease and I look at the people around me. I [see] they’re weak and I can walk, that I’m better than them. I comfort myself ...through the people around me... and others who are coming for check-ups… It means....I’ll be discharged too, though I won’t go out now,…the treatment [works] slowly, slowly….I continue comforting myself… by studying them.” Goitsemodimo (#116):“When I see someone was very sick and he/she recovered... [it] gives me hope.” Anxiety remained their constant companion. Dikeledi (#53):“When you have a side effect you become afraid… then you comfort yourself and say, so and so had it and it faded.(#51)Every day you’re afraid and not afraid at the same time – you’re in between. (#53) You’re feeling down and [then] become normal again.”

13For all direct quotations from participants, I provide the participant name and a line reference to the transcript, to facilitate an audit trail if required. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 71

Life changing events like prolonged hospitalization require adjustment (Radley, 2004; Thompson, 2002; Wilson- Barnett, 1979). People are able to hope and capable of making each moment count (Popovich, Herth, & Farran, 1985;14Sourkes, 1982). Hope is challenged or might be shattered causing a person to react with mixed emotions as people are unique.

A devastating part of the adjustment includes hospital procedures: medical ward rounds or consultations with doctors, the collection of sputa specimens and feedback on test results, discharges and pass outs, hospital visits and the deaths of others. These are pain filled, and the extended length of DR-TB hospitalization worsens the experience. Patients are confronted with the dark unknown, anticipating the worst while trying to be composed and hoping for the best. The participants were desperately worried and complained about various challenges, which are detailed below.

The negative attitude of the health staff (nurses/doctors). There were critical incidents which happened to participants during their hospitalization, such as treatment side effects, feeling weak and immobile, experiencing physiological pain and asking for pain control medication. They complained of insufficient comfort and support from the health staff, particularly the nurses. When they were often physically weak with physiological pain and asked for help and pain control medication they did not get help, but were ignored and treated indifferently. They wanted comfort and empathy which was not forthcoming, and regarded the health staff as inconsiderate and uncaring.

Goitsemodimo (#51): “Sometimes you’re not be feeling well and ask something [medicine] from the nurse and she’ll respond very negatively….. She’ll tell you that such medication wasn’t prescribed. You then feel somehow... Such things are very hurting... you feel down ...and become sicker.”

Patients rely on support, care and comfort, as nurses are their daily close source of these needs. Support and comfort preserve dignity and make patients feel valued, respected and listened to, alleviating their fears and anxiety (Parry, 1989; Radley, 2004; Wilson-Barnett, 1979). Good doctor/nurse/patient relationships should be caring, respectful, with adequate communication. This should not be limited to nurses/doctors, but expected of every one of the health multi-disciplinary team (MDT). The social worker plays a very important part in supporting and helping patients to cope.

14The paper by Popovich, Herth and Farran (1985) was not part of literature review, but it was brought in after data collection due to the data that emerged about hope and hopelessness. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 72

Insufficient information from the nurses or doctors about their disease, treatment side-effects or hospitalization. The participants were constantly concerned and worried about their medical status and felt a general need to be discharged. They wanted to understand their disease, treatment side-effects and the rationale for longer hospitalization to fully comprehend what was happening. They constantly wanted information or explanations from the health staff and other patients. When they got unwelcome information, like being told that treatment could cause blindness, they then regarded the nursing health talks negatively and also lacked confidence in the information given because they regarded it as insufficient/erroneous.

Dikeledi (#45): “I don’t like the health talks… Since I’ve been here, they tell us that the tablets are like this, they’ll do this and that to you ... It’s like it’s an everyday thing. When I attend the health talk, I already know we’re going to talk about the tablets and food.”Sometimes they had contradictory thoughts about the talks and the information as they had lost faith in the knowledge and skill of the health staff to treat and manage their DR-TB. Dikeledi (#47): “It’s not [that] the health talk isn’t important, it depends on the nurse who gives the talk and what kind of information she’ll provide… They rotate weekly...Then you…compare what one said last week and what the other says, this week about the same thing… we talk as patients ... and you discover they didn’t say the same thing – one patient will say they told her about the side effect of headaches and another one about blindness… These [nurses] don’t even know [what] they’re talking about… Then you want to follow up…to fully understand….you continues to ask the others.”

The participants complained that the medical staff showed no interest and concern, but were always in a hurry, unprepared to listen. They were most annoyed when the doctor didn’t conduct a physiological examination and then told them they were progressing well. They complained that doctors were quick to prescribe new or additional medication while saying that their sputum results were still positive and that they couldn’t be discharged as they were still infectious; they felt the negative responses were harsh. Goitsemodimo (#85):“When the doctor comes, she’ll ask, are you okay? I can see you’re okay.(#87) The doctor comes and tells you you’re okay, ‘net so’. I ask, how can you say I’m okay when you haven’t examined me? How can you say I’m okay, just like that? She’ll just stand there doing nothing. When you say you have pain, she’ll just prescribe tablets.”A good doctor/nurse/patient relationship must preserve human dignity and make patients feel valued, respected and heard, lessening anxiety about symptoms, medical condition and hospitalization.

The participants showed mixed emotions: sadness, annoyance, confusion and disappointment. Dikeledi (#31): “You don’t remain sad all the time – you’re happy and sad… sometimes in the

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 73 middle.” Goitsemodimo (#103): “On a certain day you feel somehow… you cry, you feel somehow, just like that.”

Information on treatment, procedures and side effects is vital because it helps patients understand what is happening and relieves their anxiety. Wilson-Barnett (1979, p. 27) states that anxiety is reduced when more “accurate” information is given. Field (1967, p. 88) agrees that erroneous information may perpetuate anxiety levels. At times patients are not receptive because they do not want to hear information which threatens their perceptions.

There may be defence mechanisms like denial and anger. Anxious patients have an intense desire for information and are never satisfied with answers or explanations so they repeat the same questions again and again. It is paramount that the therapist understands the patients’ anxiety; unless this is fully understood, it may affect the patients’ relationship with other health staff and cause tension (Field, 1967). Wilson- Barnett (1979) states that patients who display such behaviour may be regarded as problematic and avoided or ignored by the health staff.

Did not know what to expect from medical ward rounds, test results for sputum culture and treatment side effects. The participants perceived general hospital procedures, like ward rounds and feedback on test results, or their disease progress with fear and nervousness, because they did not know the outcome. They did not know whether their sputum culture results had converted and whether they would be discharged or not.15Dikeledi (#14):“When…the doctor is here for a ward round, I feel somehow – I don’t know what to expect. ... I wonder what news she’s bringing me today.”They reported that they were unfortunately often turned down, told that their sputum culture results weren’t available, remained unchanged, were persistently positive. And that they could not be discharged. Dikeledi (#18):“I already know what (the doctor) is going to tell me because she always says… the same thing. ... She’ll say okay you’re right, but … “mos” ... your results haven’t arrived. So you feel down… your heart becomes sore.” Goitsemodimo (#72):“The doctor will come after a long time, and tell you your results are still positive. It goes on like that; just like that, just like that, still.”

The participants said these medical procedures were always disturbing and caused them great emotional pain. Dikeledi (#14):“When the doctor comes… my heart hurts.... I don’t know what to expect....This pain is present every week.” Goitsemodimo (#87): “You feel bad and hurt when the doctor leaves because you were hoping she [would] tell you something good ... that you’re

15 Sputum culture conversion: In the treatment and management of DR-TB, when a patient’s sputum culture is converted from positive to negative, he/she is considered less infectious and is discharged home. The patient then continues with DR-TB treatment as an outpatient completing 18-24 months. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 74 improving and the results are okay.” Afterwards they often cried because of severe pain or feeling angry and disappointed; their anxiety increased. Dikeledi (#06): “Most times, I come out of the doctor’s consulting room feeling sad ...I cry. (#16) I cry every week.” Patients suffer great emotional pain and anxiety from general hospital procedures. This precipitates anxiety from hospitalization.

They also reported loss of appetite and sleep disturbances/insomnia because the situation was too overwhelming. Dikeledi (#29): “I eat, but lose [my] appetite most of the time.” Moagi (#48): “I’ve had enough of hospital food, I don’t have (any) appetite.(#74)If you were working night shift, you’d find me awake… around 01:00 am and 02:00 am.”Patients suffering from depression show symptoms like sadness, lack of appetite, insomnia and apathy. If a patient cries it is a call for help and should not be ignored, but attended to promptly. The social worker can play a vitally important role in giving the necessary emotional support (Parry, 1989; Wilson- Barnett, 1979).

All aspects of their treatment evoked negative emotional reactions and interpretations. Goitsemodimo (#107): “When it’s time for treatment, I feel somehow, I think how long I’ve been taking these tablets … so many.(#112)I’ve faithfully drunk the treatment but … [I’m] going nowhere.… It’s still the same.” Dikeledi (# 27): “What’s the purpose of drinking these tablets? … There’s nothing responding.” Moagi (#20): “The tablets aren’t working, not helping me.”Prolonged hospitalization is stressful; it can cause varying emotional reactions in patients. Anxiety is the most common.

The participants were particularly afraid of side effects: what kind, how and when they would manifest, and most importantly whether they would be reversible. Dikeledi (#29): “I develop a rash. I’ll ask, what about this rash? What causes it? (#51)You wonder if things will be okay. … If the rash will ... go away, or if your hearing deteriorates… will it be reversible. ... It’s like every day you’re afraid and not afraid, – you’re in between.”They monitored body changes all the time and asked others about their physical appearances. They questioned nurses or fellow patients on the different side effects, saying that advance knowledge lessened their fears and helped them to be mentally prepared. Dikeledi (#29): “I wonder why the treatment’s changing me. Then I’ll go and ask other people, when I see I no longer look black…I look red…I worry if these tablets aren’t damaging me inside.”Although the pain and worry did not disappear, they were not as deeply afraid when side effects did occur. Dikeledi (#49): “You benefit from [asking others about treatment side effects]. I know when I take my tablets, I may have side effects, and when they come, I’m not alarmed and afraid, instead I remember they’ve said I may develop such and such a side effect.”Anxious patients react with hypochondriasis: the constant and excessive anxiety about one’s

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 75 health which can cause severe depression (Wilson- Barnett, 1979). Sourkes (1985) adds that the presence of symptoms implies the presence of the disease to the patient.

Changes in health trigger thoughts of death or death anxiety. Dikeledi (#20) affirmed this: “When I wake up, I look at myself to see how I look. Most of the time I see I’m strong, I’m fit, and not feeling any pain…. As long as I’m not feeling pain, I’m not so worried. It doesn’t mean that I’m not worried … just that I’m not so worried. If I feel a sharp pain...that’s when I think maybe there’s something wrong with me.”

Goitsemodimo (#99): “I’m not thinking about where I’ll end or maybe it [will be better] if I was dead, instead I want to die because I don’t see what I’m living for.”Awareness of the symptoms and sources of anxiety is paramount for a therapist. Terminally ill people and hospitalized patients frequently show depression or depressive symptoms (Qualls & Kasl-Godley, 2010; Wilson-Barnett, 1979), and Popovich et al. (1995, p. 24) state that terminal illnesses influence patients’ ability to maintain hope. Depression may cause complex emotions, like all-pervading unhappiness, chronic pain and suicide ideation. The person might not talk about suicidal inclinations, but instead loses the will to live and wants a quick death. Frankl (1986) writes that even though patients express suicidal thoughts, they usually do not kill themselves. Qualls and Kasl-Godley (2010, pp. 90-91) state that ideally all hospitalized patients with terminal disease should be screened for depression. The overlapping of symptoms associated with advanced or terminal illness, medication and depression is a key issue. Decreased appetite, loss of weight, sleep disturbances, and fatigue or decreased energy can be indicators of depression, disease or medication. Differential diagnosis is important for effective intervention.

General dislike of hospital events (witnessing dying patients or other patients being discharged). Participants experienced emotional distress at being around others who were very ill or losing control or parts of their bodies and dying. Goitsemodimo (#51):“I felt bad when I saw different things happening here, like people dying ... others looking otherwise ... being very sick and eventually dying. Some people come here in good [health] able to talk, see and hear. After time… they lose their speech, hearing and sight, and end up dying...These things make me feel somehow, they affect me badly. I don’t know why they happen. I say, well, that’s how things are in hospital.”They became afraid of dying, or their own death. Goitsemodimo (#134):“If you’re dead you can’t wake up. It may happen that I die when I get back to the ward after talking to you.(#136) That’s not something that worries me for myself, but it scares me when I see a person … changing condition and dying in front of me. I ask myself what kind of treatment is this? ...What killed this

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 76 person? It frightens me, because when you’re dead, you’re dead forever. There’s nothing.”Wilson- Barnett (1979, p. 29) states that hospitalized patients have a high level of anxiety about mortality.

They were distressed when other patients who had not been in hospital long were discharged before them or going on a pass out. They were discouraged and realized their vulnerability so their anxiety was magnified. Moagi (#76): “When they start to talk [about] leaving and take their bags, I go to sleep immediately. This [experience] triggers many thoughts, it brings back many worries - you start to think, when am I getting out?”Goitsemodimo (#15):“When other patients are going on a pass out, you also want to leave. (#17) I will then feel something in my heart.”Different events provoke varied emotional reactions in patients, and add to the sum total of stress and anxiety about hospitalization.

4.3.2. Theme 2: Time The concept of time presented most strikingly among the participants. Moagi (#72): “I’ve lost a lot of time being here, my time is lost... A lot of time has passed.”Their perceptions underwent a dramatic change, which was stressful and accompanied by different emotions because they were greatly bewildered about their present and future, in the midst their lengthy hospitalization. Dikeledi (#04):“It’s not easy, but it takes day by day… some days I cry and on others, I wake up and laugh.” Goitsemodimo (#103): “On a particular day you feel somehow… you feel somehow, you cry, you feel somehow, it goes on just like that.”

Their experiences were not unusual. Charmaz (1991)16 and Sourkes (1982) have written that one’s perspective of time changes when confronted with protracted illness or hospitalization. Charmaz (1991, p.29) states further that “different factors such as the types of illness, ill people’s preconceptions about illness, their lives and their actual illnesses all affect how they will experience time.” The participants constantly linked time to their truncated lives, clear evidence that their ideas about their lives influenced their experience of time, and led to new formulations of its dimensions. This varied from passing or lost time, waiting time, unchanging time to existing one day at a time (Charmaz, 1991).

Passing or lost time. The participants were severely disturbed by lost time. Goitsemodimo (#15):“It’s all about the time I’ve stayed here. (#61)I could have progressed so much in my

16Charmaz (1991) was not part of the literature review, but it is only emerging now because it was brought in after data collection due to the theme that emerged about time. This action is justified because when conducting a qualitative study, one can do literature review and literature control after data collection (De Vos et al., 2005, p. 264).

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 77 life.”They felt they had been taken away from their valued lives and viewed the long hospitalization as a waste of time. Moagi (#70): “I’ve stayed too long in hospital... I could have built two houses ... during the two years I’ve stayed.” They talked about how they could be using their time and said they could organize their lives better, doing and completing unfinished tasks. Moagi (#78): “If I was outside I would’ve done a lot of things, (#60) …fix a lot of things at my home.” Charmaz (1991, p. 170) states that patients can use either time structures or time perspective to perceive their time: “A time structure denotes how people frame, organize, and use time, whereas, a time perspective means ideas, beliefs and views about the content, structure and experience of time.” Time structures predominated in this study. This is not surprising because society enforces the need for responsibility and being involved and when people cannot function properly, they experience tension and conflict. The participants were angered, confused and frustrated at different intervals. Moagi (#72): “When I look at my situation… now, in addition to the time I’ve lost being here, my mind becomes upside-down. It’s another mess.”

Waiting time. The participants were devastated by the uncertainty of protracted waiting. Although the concept of waiting was common in them, it emerged magnificently in Dikeledi’s case. She painted a striking portrait of waiting and what it feels like to wait. Dikeledi (#43): “I keep on looking forward to the next week. Hoping next week, next week. Every day I have something to count on, every day I keep counting and saying next week, and when the next week comes, I say next week again. …Time’s moving and things keep happening ... I keep saying next week... Sometimes… I say … on such and such a day I’ll be discharged. When the week comes [and nothing happens], I’ll count the next one… next week becomes a month, then two, three, four, and five months…I keep counting because I have something to count on. I count, I count, I count… [and] count…[and] count.” Charmaz (1991, p. 31) states that “the period of waiting is necessary to pinpoint problems or create recovery whether by fighting illness and taking responsibility or by becoming a patient. As people increase their fight against illness, time quickens.” Life rolls on and events keep unfolding.

When people accept hospitalization, they hope to get help and be cured, that their situation will improve and that their ordeal will end soon. At first the participants felt this way, expecting a quick cure and discharge; they waited. Goitsemodimo (#17): “Let me stay here and see what’ll happen and where I’ll end.” Dikeledi (#41A):“You accept you’re in hospital ... well I’ll stay here and continue taking my tablets ...maybe I’ll be cured.” Popovich et al. (1985, p. 7) state that the process of hoping involves accepting. “Assured outcome means waiting for proof asserting health or promising recovery. Patients wait for concurrence of expected good news and they long for the forced and protracted waiting to pass” (Charmaz, 1991, pp. 30 & 33).

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Sometimes, such anticipated results never happened, forcing them into limbo. Dikeledi (#8): “You keep on... You stay on, not knowing what to expect, you are in suspension – you don’t know... you stay that way.” This was not exceptional; treatment for DR-TB can be protracted, leading to an extended hospital stay and a devastating and unpredictable waiting period. Dikeledi (#41):“I tell myself, well I’ll stay here and continue taking my tablets so I can be fine. It’s important ... maybe I’ll be cured. So I keep on saying maybe, maybe next week, maybe the next week, maybe next month, maybe the month after. I keep counting days…every day is next week.” Waiting is an ordeal often accompanied by uncertainty leading to anxiety and fear (Charmaz, 1991, p. 32). Charmaz (1991, p. 31) states that “the distinctive feature of waiting is the irritating, concrete experience of it.” Waiting time means a loss of control over time.

The patient has to continue to wait for convalescence and consequent discharge. The participants did wait stoically, hoping they would be discharged. Dikeledi (#35b): “I keep on counting... I continue to have this belief in me that things will change ...even though I’m disappointed... I keep telling myself that that disease will change, (#18) I keep on hoping.”Charmaz (1991, pp. 30 & 32) states that waiting happens for different reasons. Patients wait, expecting an assured outcome and good news about their condition, that they are healthy and cured. They wait for information and change

Despite protracted waiting, they still did not get what they so desperately wanted. Goitsemodimo (#61): “I want to go out… so badly, but I have to wait for negative culture results.”Dikeledi (#65):“When the doctor tells me my results are still positive, I [realize] that I… have to wait for next week or two weeks or another month. It is painful... I start to think when next month will come.”Different types of waiting emerge. An agonized waiting means excruciating psychological or physical suffering now, and losing control of self and life (Charmaz, 1991, pp. 32-33).

The forced and prolonged waiting became so intolerable that they became impatient and weary losing the focus of their hospitalization. Moagi (#58): “The doctor took a sputum specimen… and said he wants to check this MDR-TB. It’s just a waste of time because their tablets don’t work.” Waiting becomes annoying and/or as if it wastes time. Also its experience is irritating to the person (Charmaz, 19991, pp. 30-31).

The participants felt as if they were suspended in a vacuum. Dikeledi (#18): “I feel down when the doctor tells me my sputa results are still positive.… when she says we’ll see next week, I become hopeful again ... for the whole week, and it continues like that the next week, next week,… when I see the doctor again, and she tells me the same thing…. My heart is broken. I still have to accept…fine we’ll see next week or the week after or after six/eight weeks or whenever the results

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 79 are available.”Waiting ranges from disquieting moments to a distressing ordeal, and it can result in great uncertainty. Waiting seems endless (Charmaz, 1991, p. 32).

The participants pleaded for early discharge; they longed for an end of their extended suffering. Goitsemodimo (#89):“My results are bad....they’re always positive, positive, positive … for the [entire] long time.(#05) I don’t want to be here any longer. I want to be outside and get treatment outside hospital.” Charmaz (1991, p. 33) states that when patients wait too long, they seek relief.

In anticipation they continued to map their future, planning how they would structure and carry on their lives once discharged. Moagi (#60):“I’m looking forward, I want to fix lots…at my home.” Dikeledi (#134):“I’m looking forward… I’ll... [leave] here cured… I know such a day will come…I’ll ... look for a job, I’ll look after myself and.... my child.”Charmaz (1991, p. 190) says that mapping the future means “expanding one’s perspective, permitting oneself to plan, and thinking about how to move on the map.” Mapping the future helps the participants to have hope in the midst of the devastating and uncertain situation.

Unchanging time: “During illness [and lengthy hospitalization] time takes on new dimensions and meanings; a person becomes lost in time. Different meanings of time emerge, depending on whether someone experiences a routine or serious immersion in illness” (Charmaz, 1991, p. 87). The participants experienced stasis in the monotony and regimentation of hospital life; boredom and feelings of emptiness were constant. Goitsemodimo expressed this deeply; it was more superficial in the others. Goitsemodimo (#72): “Every day when I wake, I have to eat porridge, make my bed, drink tea, and take my tablets. Then I’ll sit or walk to other medical wards [then] go back to my ward, watch TV, eat again and sleep. Tomorrow I’ll do the same. It’s like that, it goes on just like that…just like that, still. (#74) I do the same thing every day –I wake up, eat porridge, drink tea and then the tablets. If it’s the doctor’s consultation day, the doctor will come, and if I have an appointment with the social worker I’ll go, or if it’s my review date at the ARV clinic, I’ll go, then my day will be through.”Hospital routine was both frustrating and boring. Goitsemodimo felt time was static; the long drawn regimen yielded nothing positive. Goitsemodimo (#79):“My life is standstill; in one place…I’m not moving forward.”Charmaz (1991, pp. 87-89) writes that “an immersion in routines leads to a sense of unchanging time. The same set of experiences is repeated with little variation; time seems static. The day moves in a cycle reproducing yesterday – and all the yesterdays before.” Contact with only a few people each day contributes to a sense of unchanging time. Also lengthy hospitalization without improvement or decline fosters slipping into routines.

Goitsemodimo (#65):“Here you sit and do nothing… I just stay doing nothing. (#81) It hurts…that things go on like that.” Dikeledi (#120): “When I say stress I mean stressed ... that I’m here...when

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 80

I wake I think there’ll be so and so… okay, they’re here, but if I was outside maybe I could do something.” Moagi (#24): “What we’re doing here we can do at home. …We can still drink these tablets there. But now, here, after we drank the tablets we do nothing for the entire day. (#26) We just wait for food, we eat, sit and do nothing. Afterwards we eat again and sleep. (#28) Doing nothing hurts me too much.”The participants felt incapacitated and inactive as time slipped away meaninglessly each day and their existence and selves disappeared. Charmaz (1991, p. 90) says that a sense of unchanging time develops whenever anyone experiences lengthy immobilization from illness in a quasi-institutional setting. Also when days slip by and few undifferentiated events break up a day, week or month, such an experience constitutes a sense of unchanging time (Charmaz, 1991, p. 88).

Existing/living one day at the time. Charmaz (1991, p. 78) writes that living one day at a time means dealing with illness each day – but only one at a time. The future is uncertain and people implicitly acknowledge their vulnerability. Dikeledi (#04): “It is not easy [to be here in hospital], but it takes day by day. That isn’t easy at all… you cry and other [days] you wake and laugh. ....You cry and relieve the pain inside. (#91)Good and bad things have happened, but… I let them pass...because it will cause pain. (#118) …sometimes the results are positive, negative, positive, negative and scanty positive…. it’s all part of the process. That is why I said that you sometimes become happy and at other times sad...I let [everything] pass...I avoid stress ... I’m relieved.”

Patients exist one day at a time to focus on the present and minimize distractions that could lead to more stress, gaining a sense of control over their situations. Charmaz (1991, pp. 178-179 & 181) states that living one day at a time allows a person to concentrate on the present and relinquish future plans. Functioning each day is less frightening, as it lessens being overwhelmed by illness and the regimen, and minimizes a person’s fear of death and disability. The person can monitor his/her own emotions and maintain the self in uncertainty; giving a sense of control over both the self and the situation. Charmaz (1991, p. 49) states that patients tend to evaluate their days by monitoring what is happening to them, and their progress. In addition patients experience rapid twists in time and experience, separating them into good and bad days.

4.3.3. Theme 3: Isolation Being thrown in a ‘remote’ area can cause a person to live on the edge, with turbulent inner emotions of solitude and a sensation of ‘wilderness’ which can cause immense psychological damage. The participants found their isolation from ordinary life overwhelming; they felt alienated and completely alone. Moagi (#16):“She [his sister] ...doesn’t visit me here ... I’ve raised all these children [his siblings]… but now they’re relaxed and cosy, they aren’t stressed at all. I’m suffering.

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It means I am alone.”They felt confused, desolate and constricted. Dikeledi (#2): “We’re imprisoned. (#67)We can’t go out and interact with other people.” Goitsemodimo (#63): “I’ve had enough…. I no longer want to be here. (#43) I’m not free, I won’t lie. If I could get out I would be free.”

Each participant experienced isolation uniquely. They were forced into hospital routines, deprived of meaningful interactions with others as well as the larger world. Goitsemodimo (#65):“Being here you sit and do nothing – you can’t go anywhere [to town or some other place], you just walk round the hospital or go to the tuck shop. You sit and do nothing; you only get a visitor sometimes, maybe after a month. You do nothing…You just stay on.”Dikeledi (#75): “I mostly miss… my family. (#77) I’m used to them.”The hospital environment is unfamiliar and constricting, and patients have to adjust. Hospital routine is different from one’s usual home routine. Also long-term patients become bored by the same surroundings (same bed, room, people for months) (Noonan, 1981, pp. 45, 47 & 55).

The social isolation was seen as negative, straining family resources and keeping them further apart for lack of transport money. Goitsemodimo (#117):“You need this and that, and your family comes once a month and you’ll only see them again the next one…it’s because… they too, are struggling [financially]… the visitors are coming here depending on their budget. Those who have money can visit daily and bring you nice food.”Poverty, a lack of social resources and finance, reinforces social isolation (Charmaz, 1991; Gillis, 1988).

Moagi (#02): “I’m ill-treated…. I’m really ill-treated here… I’m no longer able to go home… this thing’s hurting me.”Institutionalization has many effects; it disorganizes one’s life (Field, 1967; Noonan, 1981; Wilson-Barnett, 1979).

While hospitalization was constricting and had debilitating consequences, there was a positive side; their restriction kept harmful social distractions and contacts with friends or relatives at bay. Dikeledi (#77):“If it’s someone’s birthday and ... the family isn’t able to come [here], then I wish I were there...it’s so painful…but if I was there ....maybe I’d get hurt… or injured, or something bad might happen...I’m benefiting by not being there.”Moagi (#93): “Christmas last year, Sister N, gave me R50 and said go home for Christmas. I refused and told her I’m not going home (#101) These people [his siblings and tenants] drink a lot and behave recklessly. I would have to fight with them. So I wouldn’t rest. They would give me too much stress.” Hospitalization has certain implications to which all patients individually react. Some patients regard the hospital with misgiving and fear (Field, 1967, p. 56). Conversely, the patients here, in this moment of the interview, had a sense of relief because their prolonged hospitalization protected them.

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Any event can be seen as positive or negative depending on the person’s emotional state/capacity and other factors (Wilson-Barnett, 1979). Social isolation is not always negative (Charmaz, 1991, p. 95).It was a welcome freedom from everyday life: for Moagi and Dikeledi. Goitsemodimo said that his seclusion in hospital had given him the chance of learning to take responsibility for his life and make better decisions through observing others. He realized his reckless drinking and smoking had affected him adversely and felt guilty and responsible for his current situation and suffering. Goitsemodimo (#41): “I’ve learned now that too much drinking and smoking….have killed me and… caused things to be this way.”Patients can blame themselves and feel guilty about their situations. This realization brings them in touch with the real self (Charmaz, 1991).

‘Locked up’ and restricted in the hospital, the participants remained inactive, despite having more free time; their experiences of isolation deepened; they discussed the difficulty of living alone and confined– existential isolation. They began to focus on themselves and their plight at a deeper level, shifting from the restrictive nature of the hospital, to its strangeness and ‘wilderness’. Dikeledi (#35):“I have a nice dream – being at home. When I wake… it’s quiet. I look [and see] hospital wards on all sides. I ask, serious is it me? ... Yes, it is me ... I’m alone ... and there are no people ... All the people have left.”Moagi (#46): “I’m not at all happy. Most people here speak Sotho and Zulu, there are no Ndebele. They talk and talk among themselves. It’s like someone took a big lorry, drove around, filled it with people and dumped them here. People come [here] and they also go out. There are three patients who will be discharged this Friday.” Long term hospitalization enforces separation from the familiar and evokes a sense of aloneness.

When people cannot be active and involved they do not feel fulfilled; when their minds have no focus, they turn inwards (Charmaz, 1991; Wilson-Barnett, 1979). This becomes the ‘wilderness experience’ – the sadness, emptiness, unhappiness, loneliness, helplessness, hopelessness and, most prominently, the confusion of being alone or existing alone. Dikeledi (#39):“When people have gone on a pass out …, it becomes so quiet…, there are no people. This Easter, I didn’t get a pass out, so ... when I woke, it was as if I was alone... It becomes so quiet…that you end up asking, where are the people, because they used to be always here. ...you’ll then [become] bored or you’ll sleep. (#22) When it’s cold, that’s when I miss home the most..... It’s not warm enough here.(#25) What I [mean] is, I don’t have ... my family around … I feel lost.”

Field (1967) and Noonan (1981) state that the hospital environment is disconcerting and can bring strange feelings to the surface. The participants said that apart from being separated from the external world and others, they felt disconnected from themselves and in a state where they did not know who they were or where they were. Dikeledi (#22): “When morning comes… you will not

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 83 even know yourself, [and I] didn’t know what to say or do. (#33) At night I have a dream... I’m at home…. when I wake up…, I’m still in hospital… and ultimately realize that ‘aah’, I’m still in hospital. During weekends it becomes so quiet ... I feel lost…one day I was not able to feel if it was still me. I asked, is this me? ...Afterwards, I turned and said it is me. The other people in the ward… laugh at me and say I am mad or I am imagining things.... I will feel lost… as if I’m at the place where I’ve never been before. I have here one year, but on certain days, I wake feeling as if it is not me.” They further said that this state of aloneness remained through the many days of their prolonged hospitalization. Dikeledi (#39): “You’ll be bored or sleep… you realize that there is no change, you are still in hospital and there’s nothing you can do.(#41) I’m alone, there’s nothing I can do.” Moagi (#38): “I sleep during the day… because I ask myself who will I talk to? There is no one. (#40) There is no one who is Ndebele, whom I can sit and talk to.(#103) It is hurts…well it’s clear I’m alone.” Charmaz (1991, p. 95) states that illness isolates people but it is not only the illness that isolates people, confinement also does. Also separation from the familiar surroundings raises disturbing questions about those with whom they will associate with (Field, 1967, p. 57). Further, the patients lose emotional support and can develop anxiety.

4.3.4. Theme 4: Loss The concept of loss generally expressed in relation to the prolonged hospital stay, was experienced uniquely by all three. One recounted, on a superficial level, a death-related loss of three family members who had died during his prolonged hospital admission. Moagi (#50): “My youngest brother died suddenly in [this] hospital. I still don’t get it. (#62) My mom, my younger brother and my younger sister have died. They are all gone.” Their words implied that their prolonged hospitalization was the cause of their numerous losses, including family relationships. Dikeledi (#75): “I miss being with my family…. I miss [them] the most. (#77) I’m used to them.”Loss of personal roles, ideals and acquaintances featured in Moagi’s case (#64): “There are few elderly patients here.”We experience diverse losses in life. Loss, whether death related or non-death related, has impact on human beings (Thompson, 2002). The following is a brief account of the types of losses experienced by the participants.

Loss of identity. There were changes in their bodies because of sickness and consequent prolonged hospitalization and they were very concerned, because it was difficult to come to terms with their new selves. Dikeledi (#29): “I ask... why am I losing weight this week? ... Why is my complexion lighter and [yet] the other week I became dark? ...Why is the treatment changing me?” Sourkes (1982, p. 35) states that physical signs of illness and the subsequent physical changes often make a major impact on identity. It is often difficult for a person to adjust to such imposed identity. The

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 84 participants revealed the impact of prolonged hospitalization from DR-TB on their identity. Goitsemodimo (#21): “I was sick. I wasn’t able to walk, I was coughing a lot. I wasn’t fit, it was even difficult to talk ...Sometimes… I wanted to get out of bed and I wasn’t able to do that…I wanted to stand up but could not.”

They reflected on their past selves focusing on what they had been able to do before their assumption of a sick identity. They worried that they could no longer keep their previous selves intact – capable, healthy, active, independent and in control of their bodies. Moagi (#20): “My body is now weak and in bad shape – I never had to be helped to walk before, I used to run and do everything for myself, but I can no longer do that - people have to help me...walk.”They were bereft. Moagi (#22): “A small stone tripped me, and I fell. What kind of a thing is that? …My right leg and knee are still strong, but the left one is weak.”

This reinforced the terrifying reality that they were no longer the people they used to be, and evoked feelings of anger and frustration. Moagi (#36):“I’m not able...I just fall easily. (#78) I don’t have the physical strength as before.(#87) I also hate the hospital because I’m mistreated... now I hear in [only] one ear, the hearing in the left one is deteriorating.(#89) It’s worse because I can’t even hear with this ear- it’s full of air and a funny sound rings in my head... When other people speak to me I can’t hear. Even now there’s a ringing sound in my ear; it goes on and on.”

Parry (1989, pp. 87-88) states, “Where loss occurs, grief – a universal response – will follow. A loss of self, such as… blindness or deafness, will always cause grief.” Karp (1996, p. 56) states that when such critical incidents occur they force the person to recognize that “I am not the same as I was, as I used to be.” Social workers have to understand all this grief and help those experiencing such physical losses.

The participants also expressed the anticipated loss of identity. They feared change, loss of body parts or functionality, or deteriorating health. Dikeledi (#51): “It’s very painful… You wonder if things will be okay. ...When you develop a rash you wonder if it will go away, or if your hearing deteriorates you wonder if you will recover.” Goitsemodimo (#53): “You’ll find a person was admitted, maybe 3 or 4 months after you, and stayed 9 or 12 months. That person will lose his eyesight in the end.” Loss, whether actual or threatened, can cause great anxiety and complex emotional reactions, interfering with one’s sense of identity (Parry, 1989; Thompson, 2002; Wilson- Barnett, 1979).

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 85

Loss of relationships.17 This was reported consistently and can be categorized into two sub- themes: absence from home and their role; and the need for emotional support and a sense of belonging.

Absence from home and roles. Sourkes (1982, p. 38) says that absence is part of every loss; mainly it is a continuous absence which renders a defining structure for loss of relationships. Dikeledi (#12): “I think about people who are outside, I think about my family, and want to talk [to them]. (#85)Sometimes… I don’t have airtime and I’ll cry and cry, and other patients ask me, why are you crying and I tell them that I miss home, and I need to talk to my child.”

Participants recounted the constant pain of losing their normal roles. Dikeledi (#24): “I often think that if I was at home I would be doing this and that.”This brought concurrent stressors and cumulative losses. Such role changes in turn meant that the participants’ families had to assume new roles; the families reacted differently to this challenge and forced change. Dikeledi talked about her great sorrow of being absent from her home and away from her maternal role. Dikeledi (#85): “He [her young son] is the person I think about [most], especially when it’s cold...or if it’s hot, I wonder …if the caregiver will … dress him appropriately. I wish I was at home.”She was stressed that she had to depend on her family for the upbringing and day to day care of her child. On the other hand her family had to assume the new parental responsibilities while juggling everything else. Dikeledi (#87): “I get tired [of staying in hospital] when something bad happens. For instance, if there’s nobody at home to fetch [him] from the nursery school until seven o’ clock... if I was at home, I would be the one to fetch him. ... [and] doing this and that for him.” She had no option but to face her situation. Dikeledi (#85): “I’m tired...it becomes so painful but I tell myself that it’s okay... he’ll be fine. [The caregiver] will be thoughtful.”Thompson (2002, p. 149) states that every time change happens, loss is involved. People grieve their losses.

Moagi expressed the loss of being away from his role in his home and complained that such absence meant his home was left unsupervised and without any maintenance. His great pain was worsened by the fact that his family wasn’t at all concerned. They would not assume the new role of looking after his home; a role he had lost unwillingly because of his extended hospitalization. Moagi (#2): “I’m no longer able to go home, there’s no one who’s supporting me anymore. (#4) It hurts me, it’s obvious a lot of my things are being destroyed as there’s no supervision… Things are destroyed ... in front of them [his family], it’s like they’re just onlookers.”Families react and deal with such challenges differently – some withdraw their presence and support, while others will

17There is an overlap between loss of relationship, grief, isolation (or separation). Separation brings loss in a person’s life. Individuals grieve their loss. It is like these aspects are intertwined. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 86 continue to support the patient no matter what happens. Such support and involvement is vital (Parry, 1989; Sourkes, 1982).

A need for emotional support and sense of belonging. The participants, particularly Moagi, experienced a great loss of relationships, lack of emotional support and meaningful contact. Unlike the others whose families were consistently involved, his family was not involved and offered him no support whatever. Moagi (#2): “There’s no one who supports me anymore, my young brother, T, has run away, he stopped visiting... He used to come at least two weekends a month. (#16) My sister, A, doesn’t come. (#52) A[his sister] doesn’t care for me.(#56) She ... has only come four times since I was in hospital.” Some families stop visiting the patient, or even telephoning, cutting off all communication and contact (Parry, 1989).

This was devastatingly painful for Moagi. He couldn’t understand the reason, particularly as he had made sacrifices for them. Moagi (#42): “I raised them [his siblings] when they were small, but why aren’t they bothered about me? (#16) They’re relaxed and live cosy, not stressed at all, but I’m suffering.”It brought a deeper awareness of the attitude and relationship between them. Moagi (#54): “People only need you when you have money. They act as if they love you but ... they don’t want you...No one comes to visit me. It means they’ve abandoned me.” Hospitalization with its enforced long separation from family and friends evokes a sense of abandonment; it also brings a sense of losing the status one once possessed (Field, 1967, pp. 56-57). He mourned such loss, and tapped into the awareness that he was alone. Moagi (#14): “If my brother T is abandoning me now, and the two, P and J [his siblings] have died ... who’s going to help me? ... It means I must do everything myself. (#16) It means I am alone. (#56) They don’t care at all.”

The support and involvement of family in the life of the hospital patient is crucial. It is, however, influenced by the type of the relationship, close and caring or estranged, which the patient and the family shared before illness and hospitalization (Sourkes 1982, p. 38). Patients can lose emotional support which is often painful (Noonan, 1981), and may have underlying feelings of isolation (Sourkes, 1982). Financial resources influence the families’ involvement and support; those with the means visit the patient regularly and bring him/her good food which minimizes the experience of loss (Charmaz, 1991; Field, 1967; Sourkes, 1982).

Participants complained that their lives had been disrupted and worried over their patterns of living; they needed social and leisure time. Dikeledi talked about her friends whom she missed (#12): “I think about my friends… outside. I have friends here, but I choose who to talk to.” Goitsemodimo missed spending his leisure with friends (#41): “If I was outside, I would buy and drink alcohol with friends.” Moagi longed for social belonging (#46): “I’m not at all happy. Most of the people

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 87 here speak Sotho and Zulu; there are no Ndebele here.” Sourkes (1982, p. 37) states that loss of relationships includes physical, psychological and social absence and can result in profound emptiness.

4.3.5. Theme 5: Stigma (Social Pain) The participants, particularly two of them, 18experienced both micro and macro level stigma. Their hospitalization seemed never-ending and the lack of further visible change or progress in their medical condition led others to communicate or interact with them in a way they perceived as offensive and insensitive. Stigmatization raised questions, leading to self-examination on the perceptions, attitudes and treatment of others towards them as patients.

Moller and Erstad (2007, pp. 106-107) state that stigma is a social problem with a complex social process, influenced by socialization and human judgements. People’s reactions and attitudes stereotype and stigmatize both the disease and the patient (Charmaz, 1991, 2008; Karp, 1996; Popovich et al., 1995). Writers use different terms for stigma. Popovich et al. (1995) talk of social pain, Charmaz (1991) calls it private and public audience, and Roos (2002) writes of chronic sorrow resulting from the indifference towards the inflicted. Stereotyping harms and isolates patients.

Like those in mental health institutions, hospitalized DR-TB patients suffer stigmatization. The experience can be on two levels:1) how a person perceives himself/herself in the situation: micro stigma, or 2) how he/she is addressed, perceived, reacted to and treated by others: macro stigma.

The participants recounted the experiences and feelings on both levels. On the macro level (social or public stigmatization) they reported that interaction with others was negatively affected; they were treated differently; people would question them about their lengthy hospitalization most insensitively. They complained that people, whether discharged patients, family members or neighbours, would respond negatively or pass unpleasant remarks. Dikeledi (#93): “A person [discharged patient] will ask, they still don’t want to let you go? ...If I’m here it means my lungs aren’t cured yet, but you continue asking, Are you still here? Are you still here? These words make me angry... It’s as if I’m enjoying being here.” Moagi (#16): “This happened when I was on pass out, I said to my mom, now it’s time for me to go back. She looked at me and said, are you still going there? Again? ... What for? What are you going to do there? I said, mom… I don’t know what

18 The two participants recounted the experience of being stigmatized due to hospitalization and in both the feelings of pain were evident. However, the expressions from Dikeledi were evocative and palpable as compared to those of Moagi, which were superficial. Hence expressions from Dikeledi will be mostly employed in this section to create a sensation of the experience of both self and social stigma.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 88

I’m going to do.(#80) My neighbour visited me...and asked, When are you going to be discharged? I said don’t ask me [that]... because you can see I’m still in hospital. (#83) What kind of a question is that? It makes me...very angry.” The participants were deeply hurt and angered. Dikeledi (#91): “When you meet a person [in the hospital], and he/she says to you, Are you still here? ... that question stays ... it kills me.(#91) A person can see you’re still in hospital... he/she knows very well why he/she was discharged, it’s the very same reason I’m waiting [the sputa culture results converting to negative]. He/she will [still] say, Are you still here? ...You feel empty.”The participants did not understand why others (particularly the discharged patients) were reacting in such a negative, humiliating way. They were deeply offended. Dikeledi (#99): “This person… has forgotten that he/she was once here. He/she acts as if he/she had jumped over this place and was never here. ... it’s as if I like being here or have chosen to be here... for a year – it’s as if there’s an option – a yes or a no.(#91) I ask myself what the person means because he/she knows… If I’m still here it’s obvious my sputum is still positive… I look at the person and think, but I don’t know what to say.(#95)It [really] makes me angry. (#108) [and] it’s seriously confusing.” Stigma has the potential to harm patients emotionally, causing pain, confusion and anger.

They did not expect such insensitive and offensive reactions from former patients as these people knew and understood every aspect of the conditions of hospitalization and eventual discharge.19Dikeledi (#106):“These people have forgotten what is happening here ... [and] the conditions of discharge ...they’ll still ask the same question, are you still here?” They had expected empathy, support and thoughtfulness from them. Dikeledi (#99): “It will be better if the person greets me [before asking] Are you still here? (#95) A person can say, it’s been a long time since I’ve seen you, and not be surprised (#99) [or] ask, what’s the doctor said? Or how’s your treatment progressing?”Stigmatization marginalises patients, particularly when it comes from those who are in the know, those who have been previously hospitalised with them.

They eventually wondered if there was something more drastically wrong or whether they were doing something wrong, if they were too sick or not sick at all, provoking anxiety, doubt and great confusion about themselves and the entire situation. Dikeledi (#93): “I wonder because this person was in DR-TB hospital as well, he/she seems to have very quickly forgotten what happens here. It’s fine that maybe he/she stayed for two months, but saying, Are you still here?, discourages me, [they]look down on me…maybe I’m too sick (#104) [but]maybe I’m not sick and supposed to be here, [or] maybe there’s something more wrong I don’t see (#91) there’s something I’m not doing

19 Such conditions of treatment and management (Ogunbanjo & Savva, 2011) of DR-TB included that the patient with DR-TB needs to be secluded in hospital for treatment and can be discharged home to continue with treatment as an outpatient once the sputa culture result converts to negative. A patient with a negative sputa culture is considered less infectious. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 89 right.” Social stigma is potentially harming, with profound consequences on the patient’s emotional state, which may produce self-imposed stigma. The patient can develop negative views about himself/herself; feeling depressed. Stigmatization can cause a person to feel that there is something wrong with him/her; it dents one’s identity (Charmaz, 2008; Moller & Erstad, 2007; Popovich et al., 1995).This can make it difficult for the patient to accept his/her disease or illness.

The chronic grief or unhappiness caused cannot be adequately expressed. Such negative reactions or comments made them feel they should not appear in public. Dikeledi (#104): “All of us have our weaknesses. If a person asks, are you still here? ...that really challenges you.”Moagi (#97): “People talk too much; they’ll say Moagi this, Moagi that when you arrive at the township ...that’s why I refused to go on Christmas pass out.” Sometimes the participants tried to ignore a person. Dikeledi (#93): “Sometimes I keep quiet and look at that person, other times I just ... act as if I didn’t see him/her.”Social stigmatization is inescapable. Karp (1996, p. 46) says that patients may protect themselves or their identity and they may withdraw socially.

The impact of social stigma is very great on patients, both socially and emotionally, and they struggled to overcome its consequences on their lives. They held negatives views about themselves and their disease, resulting in emotional pain and being excessively concerned and worried about contagion, fearing the potential of infecting others, including their relatives and associates. They engaged in self-blame and guilt, and endured the pain of prolonged hospitalization to get cure to protect infectivity to others. Moagi (#97): “I was told I’m infectious and shouldn’t mix with other people.” Dikeledi (#67): “We can’t go out and interact…I [have to] protect, I won’t say I’m protecting the community; first I’m protecting my family... I won’t infect them. It’s important I leave here cured so that even if somebody who’s close to me gets it [DR-TB] they couldn’t say that I had it and have infected them. (#71) I will live with guilt if the person close to me gets infected.” They wanted to be seen as normal, not labelled as DR-TB patients and feared being regarded as infectious by others. Dikeledi (#69): “I don’t want to be blamed. …If someone close to me gets TB, it shouldn’t be after my discharge but… at least 10 or 15 years [later]. It’s better when they say you had it [TB] not you have it.” They perceived their absence as a protective measure. Dikeledi (#77):“If it’s someone’s birthday … [I] wish I could be there...then I think...I might infect them.” Social stigma can produce fear of social interaction.

Conclusion. Hospitalized DR-TB patients also experience chronic sorrow from the stigma attached to them. Literature states that stigma has severe and lasting effects on a person’s self or identity. Karp (1996, p. 46) says “stigma taints the identity of people, causing blemishes of individual character”. Charmaz (1991, p. 27) states it is a branding or marker which could become permanent.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 90

4.3.6. Theme 6: Loss of Perspective (Living with Endless Uncertainty) The participants lacked perspective, as everyday life was filled with uncertainty. The unknown end was the only certainty. They were tormented because they could see no end and could not escape. They were tired, hopeless and helpless and longed to be free and back to normality, with responsibility and control of their lives.

These quotes illustrate their uncertainty and despair. Moagi (#10): “Two years! Two years! Such a long time in hospital ... when you’re arrested, you always know how long your sentence is, and when you’ll be released…In hospital, they tell you nothing, ...It’s like they say, Moagi, let us go, ... and you don’t even know where you’re going.” Goitsemodimo (#130): “You’ll meet with a person [referring to a fellow patient], and he’ll tell you I’ve been here for 1year and 6 months or 2 years, but I don’t understand why. I’ll tell him, man, I don’t have an answer because I’m asking myself that... I’ve been here for 2 years, but my results are still not right ... It’s bad to stay a long time not knowing ...what’s your position.”

Their experience was almost unspeakable; they ran out of words to describe it. Karp (1996) states that distressed patients at times lack the vocabulary to express themselves and their pain. Dikeledi (#14): “This pain, this pain… I don’t know what to say. ‘Ah’, this pain I don’t know how to explain… It’s not easy… it’s present every week. (#6) I don’t know what to do.” Moagi (#44): “I don’t know what I can say.” The participants did, however, manage to describe their primary concerns about the indefinite discharge and uncertainty of their future in a unique and interesting way.

They fretted about the unknown end of hospitalization becoming restless and wanting to go home. Moagi (#68): “We’re in jail here, how can one stay in hospital for such a long time. (#34) I just want to go… finish and ‘klaar’. There’s nothing more than that.” Goitsemodimo (#2): “I’ve stayed...a long time. (#09) I totally don’t want to be here. (#13) I’m tired… I’m too tired.”They were angered and discouraged when they realized nothing special was being done to discharge them. Moagi (#93): “I’m enough of this hospital. I’m like a prisoner ... you ask for discharge, they refuse.”

They felt the drug therapy was futile and questioned its effectiveness. Eventually they even asked what wrong they had done to be faced with such horrifying problems. Moagi (#30): “[Why] am I staying here? ... I’m arrested, but I don’t know what for. Tell me why I’m held captive here.” Field (1967, p. 90) states that when the disease does not respond to treatment, the treatment itself

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 91 threatens the patient, causing constant fear. Roos (2002, p. 131) affirms this, when people question their existence, they may ask what kind of crime they have committed to go through such suffering.

They raised fundamental existential questions: What’s happening to me and my life? Why is it happening? When is it going to end? Where will I end? Some of the concerns were stated openly, but the participants engaged in self-examination most of the time, asking themselves questions and trying to answer them simultaneously. Dikeledi (#27): “I think things [over]... When the doctor says that my results are positive, I ... tell myself [but] I always drink my tablets, where do they go? ...I’ve been taking this medication a long time...What’s the purpose of drinking them because this thing [TB], there’s nothing that’s responding... I ask and answer myself at the same time.(#29) Why am I not cured [because] ... I don’t smoke; ... drink [alcohol] ... I drink my tablets every day.(#22) I ask myself again, What if my results are never negative? What will happen? I’ve been here too long.”

Goitsemodimo (#35): “I think a lot ... I’ve stayed too long here. (#89) Other people come and stay only 5 or 9 months. I wonder why I have to stay such a long time. (#7) I ask myself how come, what is happening exactly.” Roos (2002, p. 131) says that existential questions take many forms – What? Why? When? and How?; these will severely intrude on the person’s mind.

They turned to God. Goitsemodimo (#51): “I wonder and ask, my God what’s happening? ... I don’t know why all these things happen. I tell myself that it shows there is a God.(#53) It’s only God who [really] knows, (#91) because He’s the one who has brought us on earth.(#93) The doctor doesn’t know because even if she says that it’s like this, and that, she’s from God ‘mos’.”When people realize they are trapped, they often feel hopeless and powerless. The problem itself is not important, but rather how the person reacts and is able to find meaning and transcend the problem. Frankl (1986, pp. 43-44) talks of experiential and attitudinal values to describe the uniqueness of human beings when confronted with unaltered situations.20 Existentialists hold that when a person is overwhelmed by the lack of coherence, he/she tends to turn to the higher power, God, and poses questions or needs answers to believe that there really is a God.

Intrusive questions stayed in the foreground, along with constant confusion. Dikeledi (#31): “I become so confused and ask myself, why things are this way. Why aren’t I cured?...I [try to] answer myself, and become [even more] confused.”When patients are aware that a lengthy hospitalization

20Experiential values are realized in experience, in one’s receptivity to the world, whereas attitudinal values are realized in a person’s attitude towards an unalterable situation (Frankl, 1986, pp. 43-44). Life situations will at some point demand the realization of either of these values. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 92 can’t be avoided and their condition is severe and nothing can be done, existential questions will ultimately be all encompassing.

There was a sense of being imprisoned,21 particularly in Moagi (#62):“It’s better when you’re in jail because you know when your sentence is ending; you know when you’re getting out…but here you don’t know...I’m like the prisoners.” Suffering forces a person into a state of provisional existence where hope is challenged by a sense of meaninglessness existence.

Worry and uncertainty about the future was their second concern. They wanted to return home and their waiting tasks, to resume their normal lives, and remain responsible for their lives. Moagi (#22): “This isn’t a place to stay... I’m here [in hospital] ... sleeping here, but my things are getting destroyed even more. (#52)I must go…so I can… fix everything at home and [get it] all in order.” Goitsemodimo (#45):“I didn’t get life enough as I’m not outside [the hospital], and there are things I need to do for myself, (#47) [for instance] get a part time job.”

Frankl (1986, pp. 99-100) holds that our existence is connected to the future and everything we do is directed towards it. When this future is lost, existence seems meaningless. The participants had different reactions, including: (1) seeing no reason for further hospitalization and/or continuity of drug therapy, Moagi (#20): “The nursing staff of the clinic deceived me, they told me I was going to take injections for 56 days and afterwards go back home…their tablets ... aren’t helping me ... Just think about that, two years[in hospital],”(2) needing discharge, but not from drug therapy, Goitsemodimo (#5):“I wish to be outside.(#7) I still need treatment even if I go outside; I will ... continue with treatment ... Maybe I can improve in some way,” and(3)accepting and enduring the situation for the sake of an ultimate cure, Dikeledi (#02): “We’re imprisoned [in hospital]… for the sake of … going out of here healthy.”

They said they had endured the situation with the expectation that they would be discharged before Christmas or during Easter. Moagi (#58): “I want to go. I asked my doctor and the chief medical officer yesterday about my discharge, and said to them, are you saying I must spend my third Christmas here? They said it won’t happen. (#39) When I went out during Easter pass out, I wished my results would be right when I came back. At least I would know that I would go out with treatment, and feel happy and say thanks to God my things are right.” When this doesn’t happen,

21 The term ‘imprisonment’ was used by participants in two ways: in one sense to capture the experience of being isolated and cut off from conventional life, and in the other as a sense of living with endless uncertainty, worse than a convicted person. The latter expression was greatly present in Moagi, in contrast to the initial one that was shared by Goitsemodimo and Dikeledi. However, Goitsemodimo did not use the term imprisonment explicitly but instead used ‘not free’ to express a sense of imprison or lack of freedom. Thus having to use the term imprisonment here and under the theme of isolation may appear as repetition to the reader, however detailed attention is needed to distinguish the aspects of the term as used under these two different themes. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 93 they despair. Goitsemodimo (#131): “I don’t see where I am. I don’t see the future. I see nothing.” Moagi (#66): “I see I’m not different from him [the prisoner patient here]. It’s just the same. (#68) It’s like I’m also dragging that chain among the people just like him.”

Nevertheless, people have the capacity to hope. Popovich et al. (1995, pp. 20, 24 & 26) say that hope functions as a healing power to the human spirit, giving a person a sense of control and ability to transcend the situation. Hope is challenged, however, and at some point possibly shattered.

The participants eventually viewed the whole process of prolonged hospitalization and protracted treatment as senseless, meaningless. Moagi (#58):“My life is [at a] standstill,” Goitsemodimo (#79):“My life is [at a] standstill ... I’m not moving forward.” Moagi and Dikeledi projected themselves into the future and held on to this while talking about the prospects of being set free. Moagi (#99): “There are many things needing my attention… when I go out… it must be forever and I’ll have enough time to do [everything] I want.(#85) I want to extend the kitchen, (#87) and build my home and have it in order.” Dikeledi (#134): “I see I’ll go out… cured, and I won’t infect other people ... I’ll look for a job and look after myself, and take care of my child. ... I can educate patients at the local clinic [on MDR-TB].”

Goitsemodimo felt there was no future. Although he talked about the prospects of leaving the hospital, he did not keep and move with it throughout. He was distracted and haunted by the feeling that he could not expect anything from life, that he would never be entirely free from illness and its ramifications, but bound and restrained by the effects of DR-TB. He felt his life was useless because of future bad health. Goitsemodimo (#61): “I know that even if I ... go out, I’m not free – I’ll have to continue with treatment until, until, until.(#83) Even if I get negative culture [sputum results] and go, I’ll still [have to] carry on with hospital life; drinking my treatment. Even if I’m outside, I’ll still be in hospital; the [only] difference is that I’ll be outside.” He had no meaning and purpose, had lost the will to live and was unable to set himself future goals. He yearned for an early death. Goitsemodimo (#99): “I wish I could just die ... because I don’t see what I’m living for. (#101) It’s better… to die, because I will rest.”

Frankl (1986, pp. 98-102) states that when a person cannot see the end of the provisional stage in life, they lose the future and are unable to project themselves into the future. These different reactions indicate that there are two kinds of people; the resilient and the vulnerable. Frankl (1986, p. 44) says that it is the experience of carrying one’s own cross, and not the cross itself, which signifies a person’s suffering. He also (1986, pp. 105-106) writes on the importance of attitudinal

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 94 values22and concludes that life can also be fulfilled in suffering. Human existence can never be meaningless; meaning can be made in the face of suffering (Frankl, 1986; Krill, 1978; Thompson, 1992).

4.4. Linking Experience to Existentialism: Theory-Centred Analysis (Third Voice) This third part of the analysis examines the experience of the long term hospitalization for DR-TB in terms of Yalom’s existential theory and builds on the two previous sections; it takes the experience of long term hospitalization due to DR-TB to an even higher level of abstraction and generalization than before. In section 4.3, the participants’ experiences were discussed within the context of themes emerging from their own data; but in this section, their experiences are discussed in relation to an external theoretical framework – existentialism. Hence it is referred as the ‘third voice’ – most removed from the participants’ original narratives. This section will illustrate the relevance of understanding, identifying and effectively managing the concerns and the resultant conflict rooted in an individual’s existence.

4.4.1. Yalom’s First Theme: Death Death is fundamental, dreaded and unwelcome by most people, as physical death is regarded as the destroyer. This is ubiquitous (Frey & Heslet, 1975; Kubler-Ross, 1970; Yalom, 1980). When Yalom (1980) writes of death, he goes beyond mere physical death – explaining the deeper levels of concealed, internal fears and conflicts. The existential paradigm maintains that death anxiety emanates from a person’s confrontation with his/her own death (Worsely, 2002; Yalom 1980). According to Yalom (1980, p. 8) this confrontation is the tension between the awareness of the inevitability of death and the wish to continue to be. The experience of death is inescapable; each person must face death alone.

Fear of death can cause death anxiety which appears in disguised forms such as depression, depersonalization, compulsive behaviour and hypochondria (Yalom, 1980). A person adopts death denial defences, belief in specialness and an ultimate rescuer to cope with the death experience. Despite its overwhelming reality, death can bring growth depending on a person’s experience and attitude.

22Attitudinal values, according to Frankl (1986, pp. 44 & 105), are “actualised whenever the individual is faced with something unalterable, something imposed by destiny. From the manner which the person takes these things upon himself, assimilates the difficulties into his psyche, there flows an incalculable multitude of value-potentialities. Therefore attitudinal values are among the highest values in the list of categories of values. Thus what is important is the person’s attitude towards an unalterable fate – whereby a person can act by acceptance, what courage and dignity he manifests in suffering. Therefore attitudinal values indicate to us that human existence can never be intrinsically meaningless rather a person remains responsible for his life throughout to the moment he ceases to be.” An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 95

The participants experienced a general fear of death: “I’ll die in hospital... I’ll not cope in hospital… I hate the hospital, and there’s nothing good about it.”23Their fear centred on personal death. They used phrases such as, “I was very sick, my speech was affected, I was not able to get out of bed or stand, and I wasn’t able to walk. I’ve seen how people die. I then realised maybe I would’ve died already if I had refused to be hospitalized.” Yalom (1980, p. 51) states that although the fear of death is everywhere, and people react with fear, institutionalized people are more overtly fearful about death; they experience high levels of mortality anxiety.

While experiencing death anxiety at a superficial level, the participants experienced fear of death at an unconscious level too, concealed in both neurotic and characterological reactions like hypochondria, depersonalization and depression or depressive symptoms. They said: “I’ve been long in hospital, but my results are still positive… I feel pain in my heart every week when I see other patients discharged daily.”Their reactions and utterances revealed their anxiety in a disguised way – crying frequently, spending time alone and sleeping when in great pain: “I cry every week to relieve the pain I feel in my heart, I cry, I sleep. Crying helps me to relieve the pain, but it doesn’t heal completely.”

Other times, they complained of a lack of appetite: “I don’t have appetite... I eat but most of the time I don’t have appetite… I just don’t feel like eating.” They also talked about the frustration of insomnia: “If you were working night shift you would find me awake at 02:00 am in the early hours of the morning.” They felt alone, lost and estranged: “You find that when morning comes you don’t even know yourself, not knowing what to say or do.”

Hospitalization raises thoughts of death and is a constant reminder of death and dying (Gillis, 1988; Kubler-Ross, 1981; Wilson-Barnett, 1979; Yalom, 1980), and Yalom (1980, p. 112) states that death anxiety is not immediately apparent: it is revealed by the onset of psychotic utterances, neurotic behaviour and neurotic symptoms exposing the core conflict within a person. It is imperative that that the social worker pay attention to these concealed cues.

At times the participants wished for a hastened death; they longed for an end to their suffering: “I wish I [could] just die. When I’m dead I’ll no longer see what’s happening.” Yalom (1980, p. 40) states that recognition of death contributes a sense of poignancy to life. He says people fear death differently; the most central death fear is ceasing to be, without any experience. Kubler-Ross (1981) concurs.

23In this section the format on quoting the participants’ phrases has changed, containing no names. This is because the focus here is not on the individual narratives of experiences of LTH for DR-TB, but rather the more abstract existential themes. The purpose is to pull out evocative phrases which help to take the human experiences about prolonged hospitalization to a higher level of abstraction. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 96

The participants’ death anxiety was concealed in hypochondriasis. They spoke intensely about the safety and effectiveness of their prescribed drug regimen, and the fear of treatment side effects. They were concerned about vomiting, skin rash, headache, loss of hearing and altered complexion: “I get afraid when I get skin rash or a headache… I worry when my complexion is altered and [I] wonder if things will ever be okay.”They also worried about deteriorating health/bodily strength: “My body’s shabby, I just fall easily now, my knee joints are now weak, I’m not able, I’m now supported by others when I walk.”They became obsessed: “I ... look myself in the mirror when I wake… I ask other patients about my physical appearance.” Hypochondria occur after a severe illness suffered by a patient or someone close to him/her. Also, Yalom (1980, p. 172) states that milestones such a deteriorating functionality, problem with joints and so on, provokes death anxiety. The rapid passage of time highlights the fear of death and its inevitability (Yalom, 1980, p. 171): “I cry all the time after ward round… The doctor comes and tells you your results are still positive – it goes on like that, just like that, just like that, I feel hurt when the doctor leaves because I was hoping for a positive report and I could be discharged.”

The participants grieved their many losses. They were obviously terrified and bewildered by these losses, especially the deaths of others:“I’ve seen many things in hospital that have hurt and terrified me – seeing people dying and not knowing what’s happening they affect me badly…I get terrified when I see another person [with a complicated condition] die in front of me… I get confused when the other person dies… When I see another person dying while taking treatment I get afraid… I don’t know why all these things happen; it shows that this is how things are in hospital.” They experienced the reality of death and had a deeper awareness of their limited power.

They feared that when a person died, he/she had been annihilated: “Death’s not something I think too much about, because if you’re dead you can’t wake up… When I’m dead I’ll no longer see what’s happening… This is what scares me: I will be dead forever and there is no other thing.” According to Yalom (1980, p. 173) people have a very limited perception of death until they are confronted with it. Yalom (1980, p. 27) states that people erect defences based on denial in order to cope and that these are shaped by one’s character. Repression is ubiquitous. Yalom (1980, p. 115) states that belief in specialness and belief in an ultimate rescuer are two basic denial defences.

Yalom (1980) states that belief in specialness exists when a person believes in his/her inviolability and invulnerability, and only understands the death of others, not his/her own death. This irrationality is deeply embedded in our unconsciousness. No one consciously denies the reality of death, yet deep, deep down each of us believes that mortality applies to others, but certainly not to

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 97 ourselves (Kubler-Ross, 1981; Yalom, 1980). Yalom (1980, p. 120) states that experiences make a person realize that the universe treats everyone in the same harsh way, with no specialness.

Participants reacted with immense denial. They believed they did not have the disease as they looked healthy: “Most times I deny I have this disease, I look at people around me – I see they are weak, and I can walk, and that I’m better than them.” In other instances they were convinced they had profoundly recovered since their admission and that they were fit to be discharged: “When I look closely, I find I’ve improved and my body’s now strong [enough] for me to be home.” They were totally convinced that their doctors were keeping them longer for no apparent reason: “I don’t understand why they’re keeping me here; why am I staying here?” Despite this belief, they were often greatly perturbed by their unchanging medical condition, especially the persistence of positive culture results: “My results [have been] positive for so long, it means they’re bad.”

They expected to receive special treatment from their doctors particularly as there had been no change. They eventually realized that they were not going to be given any preference, but get exactly the same treatment as others. “I worry that I’ve been taking this treatment for too long, yet my results are still not right. It doesn’t mean I’m the only one. There are others who have stayed for 7 or 12 months.” They discovered they were no more special than the others; that they were living in the same indifferent world as everyone else, and that the universe treated everyone the same without acknowledging their specialness (Yalom, 1980). This shattering of their belief precipitated feelings of anger and betrayal, especially towards their doctors, and they regarded the whole endeavour as worthless: “Why are they keeping me, because their medication isn’t helping – it’s a waste of time.”

When a person finally becomes aware of reality, he/she starts feeling betrayed by life and blames the cosmos. People cope differently: they have brief moments of awareness, denial, acceptance, fear and internal processing, oscillating between these emotions. Yalom (1980, p. 118) calls this “staccato fashion”. He says these emotional reactions are temporary, and that a person can be happy or relieved. The participants affirmed this: “The days aren’t the same; every day you’re afraid and not afraid at the same time. Sometimes you become right and normal; you aren’t happy or sad, but in the middle… Most of the time I cry, I cry and go to sleep, but I’ll wake up the next day and laugh.”

Yalom (1980, p. 129) talks of the belief in an ultimate rescuer as the second fundamental death denial defence. He defines it “as the belief in the existence of a personal omnipotent intercessor: a force or being that eternally observes, loves and protects one.” Significant people fulfil this role: a person’s partner or spouse, child, a parent, a friend and even one’s doctor.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 98

A person will hold onto this belief as it serves to control fear of death and also provides a considerable source of solace, but the belief can collapse at any point. Yalom (1980, p. 134) states that such a breakdown is precipitated when the belief in the presence and power of the ultimate rescuer is withdrawn or fails, for example when the significant other dies, leaves or withdraws love and attention. People react with mixed emotions, from losing faith in the ultimate rescuer’s power, feeling angry, deceived, overwhelmed, disappointed and helpless, to feeling alone. Some regret past behaviour. One participant considered his family members as selfish, not worried about him, but continuing with their lives: “I’m alone, my family doesn’t care and they don’t support me, they aren’t worried I’m sick in hospital, but they’re relaxed.”

The participants put their faith in their doctor(s) while taking their prescribed drug therapy: “I’m getting treatment here and I’ll be cured and go home.” They continued to hope they be cured and waited patiently for their medical condition to change: “As long as I’m drinking my treatment every day, I’ll be fine.” The passage of time and lack of evident change or expected recovery made them doubt whether their doctors and prescribed treatment would ever help and cure them: “How long I’ve been taking these tablets, faithfully, many tablets, but I’m not progressing.” They were also angry: “Their tablets aren’t working, it’s not helping me, and I’m just drinking them.” They were agitated:“I ask myself, I’m always drinking my medication, but where’s it going? What point is this treatment?”

They scorned the doctors and health staff, especially the nurses, saying that they were not really good at their jobs because they did not know how-to treat DR-TB, even though they claimed to be the only experts in the field: “These people don’t even know what they’re talking about during health talks; the nurses always give us different information – one will say such a tablet causes a headache and another one will say the same tablet can cause blindness. They just give us their opinions, not real facts.” They also lost confidence in the doctors’ expertise: “The doctor isn’t God; she doesn’t know why. She’s also from God; only God who knows.”

The participants also felt their doctors were insensitive and egocentric, always busy, never explaining their condition. They expected interest and empathy with sufficient time to ask questions and discuss their concerns and fears. They blamed doctors for not respecting them, and always giving bad news; they were concerned that the doctors never conducted a physiological examination, just telling them quickly that their sputa results were positive or not available. The doctors were also too quick to prescribe medicine when they had physical ailments: “The doctor will come after a long time, and she’ll say, are you okay? I can see you’re okay. I ask her, how can you say I’m okay when you didn’t even examine me? How can [I be] okay, just like that?” They

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 99 referred to the nurses’ negative reactions: “You’ll ask for something from the nurses and they treat you somehow, and tell you the doctor didn’t prescribe such medication.” These complaints reveal the collapse of belief in the ultimate rescuer – the trust and confidence in their doctors to cure and help them had been shattered.

Yalom (1980, pp. 132-133) says that patients want doctors to retain their power so that there is total confidence to the point that they will not challenge or doubt the doctor. They act obediently and cooperatively for the sake of peace: “I don’t bother anyone about discharge anymore, I believe in my doctor and the chief medical officer and I expect them to act swiftly. My doctor came for the routine medical ward round and he didn’t say anything [about discharge] – this made me very angry, but I don’t want to argue. I’m now afraid to tell him when I’m having physical pain because he doesn’t care, he can’t even ask me how I’m feeling.”

The withdrawal and tendency to be quiet, not asking any questions or complaining to doctors, being obedient and cooperative was a way to cope with their death anxiety. Commonly, patients with terminal illnesses fear angering or disappointing their doctors; these patients want to appear good and always remain obedient and cooperative, even though they are extremely anxious in a doctor’s presence (Gillis, 1988; Wilson-Barnett, 1979; Yalom, 1980): “When the doctor comes, I feel upset, my heart throbs, when they say the doctor’s here for a ward round I feel somehow, but I already know what she’s going to say and how she’s going to say it.” Many patients allow doctors to maintain the role of the “successful healer” (which fulfils them as doctors) by concealing important information on their psychosocial and physical conditions, and in turn the patients conceal their pain and despair from doctors, but will open up to other professional health staff, such as social workers. Such behaviour misleads doctors, as they believe the patient is well and coping. Consequently, these doctors are reluctant to refer such terminally ill patients for psychological treatment.

4.4.2. Yalom’s Second Theme: Freedom Yalom (1980) writes that freedom has many connotations. In an existential context, freedom is the human’s ability to create, desire, choose, act and change his/her life despite unpleasant adversity. It is central to human existence and important for survival, placing responsibility on each person for his/her life and conduct. Existential freedom implies that there is no structure in the world, leaving one confronted with terrifying groundlessness. Yalom (1980, pp. 8-9) states that “a key existential conflict is our confrontation with groundlessness, and our need for ground or structure.”

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 100

Responsibility and willingness are the central concepts (Frankl, 1986; Worsely, 2002; Yalom, 1980). There is no freedom without responsibility awareness, responsibility assumption and free choice or decision. Yalom (1980, p. 218) states that “responsibility means authorship; to be aware of responsibility is to be aware of creating one’s own self, destiny, life predicament, feelings and suffering.” Responsibility can appear so overwhelming that a person might do anything to avoid it and use defences. Being responsible can be fulfilling and lead to growth.

The key approach to dealing with the theme of freedom requires that the therapist is able to uncover how the patient has contributed in creating his/her life, situation, predicament, suffering or feelings (Yalom, 1980, p. 232). The therapist must work within the patient’s frame of reference.

Freedom was masked in complaints about the disruption of their lives through protracted hospitalization: “You’ll knock off work and go home. What about me? I’m sleeping [here], yet my things are getting destroyed… I miss being with my family.” The participants regarded the cause as external, yet failed to examine the role they had played in creating their own dysphoria. Yalom (1980, pp. 216 & 273) states that when the patients complain about their life or what they miss doing or what’s going on or is wrong, it is a signal that they are confronted with the theme of freedom as an existential concern. It is imperative that the therapist is able to pick this up, bringing it to the patient’s consciousness as a means of personal change. Patients must come to a point where they accept the situation and act by making free choices. Frankl (1986) talks of actualizing values, stressing attitudinal values. We must respond by realizing three values: experiential, creative and attitudinal, the last of which he regards as the most critical.

I will discuss the participants’ complaints separately, illustrating the part of freedom in their experiences and how this is an existential concern. It is vital to note that each participant blamed external forces or others. They avoided responsibility and thus were unable to discover what role they had played (Yalom, 1980).

Loss of relationships. The participants blamed the hospital as an institution for their hardships: that their life was no longer the same. They constantly complained that they were out of their familiar environment: “I miss home the most when it’s cold. It’s not warm enough here in hospital because I don’t have my family around.” They were miserable about being alone, without a sense of belonging. They were angered by the extended hospitalization, and regarded this as mistreatment. “I’m really ill-treated here – the reason is that I’m no longer able to go home.”

They were indifferent to their surroundings. Despite their complaints about being lonely, they did not form new relationships or engage meaningfully with those around them. They were reluctant to

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 101 socialize with others for their own particular reasons. They did not share a common language with them and could not identify and accept them as their peers: “I’m not at all happy. Most of the people here speak Sotho and Zulu; there are no Ndebele. They talk among themselves.”

The participants were uncomfortable with other patients, always cautious and selective in communication. They did not trust them, instead they persistently wanted to communicate or interact with their relatives and old friends: “I think about my family [and] want to talk to them… I think about my friends.” Unfortunately, these people were not there because of distance and lack of finance: “Sometimes I have to wait for two months for my family to visit because the hospital is far and taxi fare’s expensive… I think about people, who are outside, my family; I want to talk to them. Sometimes I don’t have airtime and I’ll cry and cry.”

From these perceptions and their created reality, the participants became very unhappy and devised protection strategies. They decided (1) to withdraw themselves from social conversations and interactions: “[I] sleep during the day because I ask who I can talk to. There’s no one”; (2) to engage very little and then cautiously with others for fear of becoming too attached, and having to start other relationships when these people were discharged: “I have friends here, but choose who I talk to.”

We all face adversity; we are all challenged, but have to face the responsibility or choice of authorship and creation of our own lives, selves, destinies, life predicaments, feelings and even our suffering (Frankl, 1986; Yalom, 1980). The participants’ choices limited them. Sartre (as cited in Yalom, 1980, pp. 218 & 230) says we are responsible for what we do, the decisions we make and those we fail to make. The participants wanted to live as before. Existentialists stress that the therapist (or social worker) must identify how the patient has created his/her predicament and their part in the problem in order to help the patient become aware, accept and change.

Self-creation is lonely. Yalom (1980, p. 221) writes that people avoid responsibility because they fear groundlessness; we react to groundlessness the same way we do to fear: we seek relief by erecting avoidance defences. Yalom (1980, pp. 221-230) identifies five psychic defences. The participants used a defence of displacement of responsibility to another – they attributed their problems to factors outside themselves.

They were very unhappy that their relatives did not show any empathy and give them the emotional and financial support they had expected: “There’s no one who’s supporting me anymore, it means I’m alone… My family has abandoned me. They don’t care at all and I don’t know what to do.” The participants avoided autonomous behaviour. Yalom (1980, p. 236) states that typical resistances to

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 102 responsibility assumption are phrases such as: I don’t know what to do, tell me what to do. The patient pretends to be helpless, knowing what to do, but refusing to take responsibility. Fear of groundlessness brings loneliness but assumption of responsibility abandons the belief in the ultimate rescuer (Yalom, 1980, pp. 221 & 230).

Loss of social roles. The participants complained that hospitalization blocked them: “I’m unable to go home… How can I go, because I don’t have money; who’s going to give me money… I used to work as a builder; people would hire me.”

They said they could no longer be their old selves. One participant spoke of the pain and misery at the loss of her maternal role: “Sometimes I don’t have airtime and I’ll cry. Other patients ask me, why are you crying? I say I miss home and need to talk to my child.”She wanted to be part of her child’s daily upbringing and participate in all the daily decisions about him: “I wish I was at home. I would be the one to fetch him [from nursery school] [and] do this and that for him.” There are no absolutes; we ourselves create our own experiences (Yalom, 1980).

One participant worried that his home, left unsupervised or maintained, would be destroyed: “I’m sleeping here, and a lot of my things are getting destroyed at home. I should be doing the necessary renovations [there], but I’m here.” He realized he was indeed alone, left to face his life alone instead of getting any solace and empathy from others, especially his relatives: “I can see that all the trouble and suffering are on my shoulders only. My family doesn’t care. They’re not suffering like me.” He then accepted his adversity and was willing to take control, regardless of who was around him or what was happening to him. He projected himself into the future: “When I go out I know I’m alone. It’s obvious, I’ll do things on my own. That’s how it is.”

In spite of accepting his hardship and willing to take control, the participant was totally dissatisfied by his relatives not paying any hospital visits, and sharing in his suffering by showing concern and care with either emotional or financial support. He blamed them for his situation: “There’s no one who’s supporting me anymore, my young brother, T, has run away, he stopped visiting. My sister, A, doesn’t come to see me; she doesn’t care for me.” After deep reflection, he regretted the time he had spent for them – he perceived he had been used for financial and material gain, and felt he had wasted his life on them, gaining nothing in return: “I’ve raised all my siblings [and] stayed with them for a long time, but now they’re not stressed at all, but I’m suffering. I’m alone. They’re staying well. People only need you when you have money. They act as if they love you. Now no one comes to visit me; they don’t care at all.” Yalom (1980) says that people are capable of assuming responsibility in life, either fully or in some areas when they grasp their life situations and accept them. Unpleasant and unalterable situations are bound to happen to us at one stage in our lives, and

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 103 this could not be predicted. Therefore a person cannot control or change what is happening to him/her, but has power and control over his/her response, attitude, perception and choice to the faced situation.

The participant who complained about not being able to perform her role as a mother and the difficulty of entrusting the caregiver with her child’s upbringing, had after reflection realized that it was important for her to accept and take control, releasing herself from everyday stress, and also preventing future stress. She decided to trust the ability of the caregiver to care and protect her child during her absence: “I think a lot about my child, especially when it’s cold. I think that if I was home things would be different. In the end I tell myself that he’ll be fine, he’ll be well looked after.” Attitude toward the situation and the ability to decide is important, not the severity of the event (Frankl, 1986; Yalom, 1980).

Illness, sickness and loss of identity. They were anxious about physical changes, deterioration or limitations, and feared poor health: “I’m not able anymore. My limbs are weak”; weight loss: “I’m losing weight”; altered complexion: “Why is treatment changing my skin? I look black, and next I’ll be red”; speech difficulties: “I wasn’t fit, (and) it was difficult to talk”, and hearing problems: “I’m now hearing in [only] one ear.” They knew that they were not their former selves, no longer independent, active and able to control their bodies: “Sometimes you want to get out of bed and you are not able to [or] you want to stand up, but can’t do that… My body is now weak and in bad shape, I used to run and do everything myself; but I can no longer do that – people now [have to] hold me when I walk.” Their complaints and worries about their life, is the indication that they are challenged by existential freedom (Yalom, 1980).

The participants were also preoccupied with their long hospitalization. They complained about the reactions of others: “Are you still here in hospital?… They still don’t want to let you go?… When are you going to be discharged?” The participants were angered and blamed others for their pain:“They don’t think… You feel empty… You feel very weak.”They acted as victims: “A person knows it’s possible to stay in a hospital for a long time, but ask, Are you still here? This makes me angry.”

They claimed they did not know what to do or how to act when they really did have choices to take full responsibility: “That person said, ‘Are you still here’. I wonder because he/she knows a person must get a negative sputum culture to be discharged. I look at the person but I don’t know what to say… When I was on pass out, I said to my mom now it’s time for me to go back. She said, are you still going there? What are you going to do? I said I don’t know what I’m going to do [there].” They used resistances such as: I don’t know what to do, which evoked and maintained feelings of

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 104 pain and suffering from the unpleasant faced situation. Yalom (1980, pp. 231 & 233) says as long a person believes in ‘can’t’, then he/she will be unaware of his/her active contribution to the situation. Once a person gains awareness of responsibility, he/she must be able to decide and act even when confronted with an unalterable situation because choices influence attitude and emotions. The patient may distort the data to fit his/her assumptive world.

They also believed their situation was beyond their control and continued blaming others: “It’s as if I like being here [or] I’ve chosen to be here for a year [or] it’s like there’s an option, yes or no.” They constantly worried and felt vulnerable: “All of us have our weaknesses. If a person asks, are you still here, you look at yourself and think maybe you’re not sick, not supposed to be in hospital [or] maybe there’s something [else] wrong with you.” Unawareness of their responsibility caused them great unhappiness and lack of control in their lives. They played the role of an innocent victim and were unaware creating distress for themselves. Yalom (1980) states that the key approach to noticing, understanding and dealing with the theme of freedom is to be able to notice how the patient has contributed in creating his/her life, predicament, suffering or feelings.

They chose to ignore remarks: “Sometimes I’m able to ignore the question, are you still here… Sometimes I keep quiet and look at that person, and at other times I just ignore that person; I’ll act as if I didn’t see him/her.” Yalom (1980, pp. 221 & 227) states that when people avoid personal responsibility by displacing it and blaming external forces, they are simply avoiding the issue by choosing not to act and achieve personal change, even though he/she still remains fully responsible.

The participants were worried and feared the possibility of infecting others, especially their immediate families and those with whom they closely interacted: “We can’t go out and interact with other people. I’m protecting the community; my family [the] most. I won’t go out to infect them… If it’s someone’s birthday, you wish you could be there with others. But you realize you might infect them.”

The participants feared the inevitability of labelling: “It’s important I [leave] cured. If somebody close to me [gets] DR-TB they [people from my community] shouldn’t say it’s because I have it and infected him/her – I don’t want to be blamed. It shouldn’t [be] soon after I’m discharged. If it happens 10 or 15 years later they’ll [know] it’s not me, and will say that Dikeledi used to have TB 10 or 15 years back. It’s better when they say that you had it, not you have it.” Yalom (1980, p. 274) says patients play a significant role in their disease. They should therefore take active control and responsibility over their psychological state and attitudes; there is no limit to the range of psychological options available to a person in adversity; how a person receives and perceives what

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 105 is happening is most important, not so much the severity of the life event. The person is faced with choice and cannot escape freedom.

Patients are responsible for their worlds. Yalom (1980, pp. 231-232) says that “the therapist has to continually operate within the patient’s frame of reference, that a patient has created his/her own distress.” The social worker must always ask how the patient has contributed in creating his/her current situation, and what the patient fears (Yalom, 1980, p. 233). Resistance arises because the patient is not an objective observer and may use externalizing defence mechanisms and distort the data to fit his/her own created assumptive world. People hide behind these defences. It is critical to realize and accept that he/she has created his/her unhappiness and stop attributing it to external factors and beliefs that the situation stems from bad luck, bad genes and so on. A person is not a product of environment or heredity–he/she decides to believe, what needs to pursue and what to make of his/her uncomfortable life situation (Frankl, 1984, 1986; Yalom, 1980).

4.4.3. Yalom’s Third Theme:Isolation (Existential Isolation) Yalom (1980, pp. 355-356) states that, existential isolation (EI)24 refers to the separation of a person from the world, and is accompanied by deep loneliness. It is not interpersonal or intrapersonal isolation, but rather a fundamental form of isolation in an existential context. Being separate means to be cut off, without the capacity to use human powers, being helpless, unable to grasp the world actively – the things and people (Yalom, 1980, p. 358). Everyone is separated from the world, absolutely alone, regardless of all the people or objects around him/her, or the numbers of good and close relationships. People are, however, afraid to be alone, needing to love and belong, feel secure and protected. No one can escape existential isolation.

Each of us enters existence alone and must leave it alone (Yalom, 1980, p. 9). Yalom (1980, pp. 358 & 362) states this state of isolation invades a person’s existence violently, causing feelings of deep loneliness and powerlessness. Yalom (1980, p. 362) writes that one must be alone to experience aloneness, because it is through facing aloneness that a person is able to engage deeply and meaningfully about his/her life. This isolation is always within and waits to be recognised, not by looking outside, but through inward search (Yalom, 1980, pp. 359 & 362). Yalom (1980, p. 9) says that “it is through time, solitude and freedom from the everyday distractions which fill our lives that we will be able to engage in deep personal reflection on our situation/existence and be able to self- create ourselves”. We grow through differentiating or individuating ourselves from others and the

24 Existential Isolation and interpersonal isolation are closely related and they share a common boundary (Yalom, 1980, p. 355). Therefore there will be times where I will use existential isolation, isolation and separation interchangeably to refer to the same thing. I will use the abbreviation EI when referring specifically to Existential Isolation. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 106 world by courageously facing separation, and confronting it with determination (Yalom, 1980, pp. 361 & 363).

The experience of LTH overwhelmed the participants: “I’m alone… There’s no one… It becomes so quiet during weekends, and there are no people around.” They sought solace and protection from others to eliminate the experience: “It’s quiet here in hospital during weekends/Easter. You ask yourself where are the people? They always used to be here… There’s no one is visiting me.”

They were left alone: “You look at all sides, but you are still in hospital and there’s nothing you can do… It’s clear I’m alone.” They searched inwards: “I often feel hurt when my visitor leaves because I’m left alone. The end of visiting time bothered me for a long time until I comforted myself.” No matter how terrifying and lonely the experience of EI, we can still accept and face it with determination. We will eventually succeed by individuating ourselves, developing inner contentment and being less anxious and fearful.

EI camouflages itself in a need for interpersonal relations/fusion: “I’m unable to stay with my family – I’m not able to see and speak to them daily… I get [only] one visit a month, and have to wait for the next month… We can’t interact with others, see many things, and spend time with friends and family.”People need interpersonal fusion/relations for stability, solace, affirmation and protection, and so become dependent on others. Existential isolation and interpersonal isolation are intricately interwoven – fear of EI is the base of many interpersonal relationships and a major force behind transference (Yalom, 1980, p. 362). The social worker needs to identify and differentiate these and treat the patient accordingly.

The experience of absolute separateness greatly distressed and threatened their existence: “We’re imprisoned here… I’m not free here.” They perceived their prolonged hospitalization as the basis of great loss: “I’m no longer able to go home… I’ve missed special occasions, like Christmas, Easter and family birthdays since I’ve been in hospital… There’s no one who’s supporting me or giving money… I can’t be a mother while I’m in hospital, and instead my family has to raise him.”

When everything a person believed was valuable is stripped away, the world suddenly becomes unfamiliar. Yalom (1980, p. 358) terms it defamiliarization: a state where one is suddenly cut from the world of familiar routines, environment, objects and people. A person feels empty, lost and disenfranchised, as well as saddened by loss of control and independence and the need to remain part of the larger whole. The world becomes strange, violent, merciless and unfriendly. There is nothing left.

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Their perception and relationship with their former world was profoundly affected. Lost and empty, they were unable to exercise their own rules, values, morals and ethics: “It’s not warm in hospital – not warm enough… The hospital is not a place to stay… This isn’t life… I’m ill-treated here… There’s no one I can talk to – [they] only speak Sotho and Zulu. There are no Ndebele… There are few aged patients.” Yalom (1980, pp. 360-361) states that defamiliarization also involves roles, values, rules and morals which provide structure and stability. When one is deprived of such meaningful entities, then a person experiences EI. He/she cannot hide in the world of everyday familiar activities, but has to confront the world’s loneliness, mercilessness and nothingness. The participants wanted to fuse with others but everyone, including family and friends, was involved in their own lives and routines. The world unfolded as usual, time passed and waited for no one: “My family doesn’t care, they’re not worried about me at all… I’m alone and there’s nothing I can do.”

Separation is the source of all anxiety according to Yalom (1980, p. 358). This is natural because a person does not exist as a separate entity, yet is paradoxically alone. Interpersonal relationships are not the answer; instead they prevent opportunities of growth through isolation. Yalom (1980, p. 363) states that the major buttress against fear of EI is relational. People may use others as tools or defences to satisfy their personal needs and desires because they dread isolation.

Relationships serve various purposes for different people; engagement has its disadvantages as there is the risk of losing self-awareness by investing too much in others. The problem of a relationship is fusion – isolation (Yalom, 1980, p. 362). It is important to be cautious, creating a “need-free relationship” and not using the other as a tool or defence mechanism against isolation.25 The social worker must realize that such behaviour indicates internal conflict and that these defences are ways of concealment; the shared relationships are not genuine, but defences – Yalom (1980, p. 363) calls such relationships ‘miscarried’ or ‘distorted’. These, with their products, functions and metafunctions, constitute interpersonal psychopathological/pathological relationships (Yalom, 1980, p. 364). People who are capable of acknowledging and confronting their isolation can overcome the dilemma of fusion-isolation; they will be able to separate, stand out and grow, while a person who is not able to separate, will not grow. According to Abraham Maslow (as quoted in Yalom,1980, pp. 368-369), they are deficiency-orientated, relating to others for their usefulness and dependent on gratification of needs like safety, belongingness, identification, love, respect and prestige. EI is a gift – an opportunity for growth.

25 Yalom (1980) identifies a number of types of relationships. He however emphasizes that in order to understand and be able to notice pathological relationships; the therapist must first be able to understand what a genuine relationship is. He refers to a need-free relationship as the rightful, genuine relationship. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 108

A person cannot remain fused with others forever; there will come a time when he/she is forced to be totally alone. Yalom (1980, p. 363) says that no relationship can eliminate isolation, only relieve the pain of isolation. Although the participants were haunted by their distressing experiences, they ultimately acknowledged their separation/isolation and confronted it with courage: “It hurts when you have no one/or your family’s abandoned you, but at least I know now that I’m alone. Even when I [leave] I know I’m alone and I’ll have to do everything alone.”There is growth in separation; people can grow from pain and suffering (Frankl, 1986; Yalom, 1980).

4.4.4. Yalom’s Fourth Theme: Meaninglessness People require meaning for continued survival. When they cannot find meaning they enter into a distressing state of meaninglessness and are forced to question their lives. In severe forms this can lead a person to commit suicide (Yalom, 1980). The search for life meaning is persistent and critical as it questions the purpose of cosmic and terrestrial life. It takes the why, what and how format, and demands answers.

People search for meaning in secular activities to feel worth and self-actualize (Yalom, 1980, pp. 431-438). These meaning-giving activities cannot provide a person with life meaning because they can become meaningless, and then a person’s meaning will collapse. When this happens, a person is faced with too much time and is forced into a crisis of meaning. This is closely related to leisure and disengagement and can result in existential frustration and existential neurosis, causing great existential distress. This must be effectively treated in therapy. According to Yalom (1980, pp. 8-9) the existential conflict in meaninglessness arises from the dire need of existing beings who are constantly searching for meaning in the cosmos that has no meaning, and which waits for each person to create own meaning and structure for life.

The participants experienced a crisis of meaninglessness26 in their prolonged hospitalization. They did not know the end to their ‘provisional’ hospital admission and lived with great uncertainty daily. They constantly worried about the unknown; firstly the ultimate outcome and future, and secondly, the indefinite discharge date: “It’s bad to be in hospital for so long not knowing why, and what your position is… You don’t know what’s happening… You don’t know what to expect.”

Yalom (1980, p. 454) states that the crisis of meaninglessness can be precipitated by events including: confrontation with death, urgent or boundary experiences, or some major upheaval which

26 Yalom (1980) uses several terms (such as crisis of meaninglessness, existential stress, anxiety of meaninglessness, meaninglessness crisis and existential sickness) interchangeably or synonymously to refer to meaninglessness. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 109 suddenly uproots the ritual and tradition of a social order. The participants’ sense of meaninglessness over the unknown end to their situation had two interrelated aspects:

1. Uncertainty over the ultimate medical outcome and the future. The participants accepted hospitalization hoping for an ultimate cure and discharge. As time passed without any progress, they struggled with meaninglessness. They asked existential questions: What, Why, Where and How? But the Why question predominated:“You’ll meet another patient, and he’ll tell you, I’ve been here for 1year and 6 months or 2 years but I don’t see why. I say me too; I ask myself why? If we’ve stayed here for the same period, 2 years, we still ask Why?… Why have I been in hospital for so long?… Why are my sputa results still positive after being in hospital for 2 years?… I ask myself why I’m not cured.”

They searched for deeper meanings: “When the doctor tells me my sputa culture results are positive, I think every time, I always drink my tablets, but where do they go? Because it’s been so long that I’ve been taking this medication everyday… The first question is, why am I not cured? I don’t smoke [or] drink alcohol.”They also asked why they had to stay so long without a cure:“I was admitted months ago. I’ve now spent a long time here. I ask myself what’s happening exactly? Other people stay here 5 or 9 months only. Why I have to stay such a long time?” These questions confronted terrestrial meaning (Yalom, 1980).

The participants were preoccupied by many disturbing questions: “I don’t rest – I’m always thinking… I think a lot, I’m thinking about things… I think I’ve stayed far too long.” They questioned the reasons: “What’s happening? What’s going on, oh God? My God what’s happening?” These ongoing questions demanded answer(s): “I ask a lot of questions, but only God knows, because He’s the one who brought us on earth… Why aren’t I cured? I ask myself questions and try to answer them over and over again, I become confused – at the end of the day I [still] have questions.”

The participants were grappling with cosmic meaning and so looked up to a supernatural power or God to gain an understanding of their existence (Frankl, 1986; Krill, 1978; Yalom, 1980). Yalom (1980, p. 421) states that most patients, including institutionalized ones, question the senselessness and aimlessness in life.

Their forced and perpetual waiting haunted them: “When the doctor tells me my results are still positive, I think I have to wait for next week or two weeks or a month. I think about next month, and I realize it’s only the 2nd, so I start counting the days, maybe next week, maybe next month, maybe the month after; I keep counting; every day is next week, next week, and next week. You keep on, not

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 110 knowing what to expect.” It is extremely difficult to continue living without answers (Frankl, 1986; Krill, 1978; Roos, 2002; Yalom, 1980). Meaninglessness paralyses a person by haunting his/her soul.

They were frustrated by the ongoing situation: “When it’s time for medication I think how long I’ve been taking treatment, but my results are bad – they’ve been positive for the long time I’ve stayed here.” They ultimately questioned continuing the prescribed treatment when there were no changes: “What is the purpose of these tablets because there’s nothing that’s responding?… What if my results will never be negative? What will happen to me because I’ve been here too long?”

They regarded the drug therapy as useless, losing interest in continuing drug therapy without any limit: “We can still drink these tablets at home – why are we staying here? It’s just a waste of time.”They regarded the cosmos as harsh: “This isn’t a place to stay; you’ll knock off but what about me… I’m sleeping here yet my things are being destroyed – how many months have I spent in this hospital bed?”27

The problem of meaninglessness is ubiquitous, and a frequent clinical complaint among patients (Yalom, 1980). Frankl (1986) distinguish two stages of the meaninglessness syndrome: the existential vacuum and the existential neurosis. The participants experienced the existential vacuum, complaining about the lack of direction, as well as the prescribed (and apparently useless) drug regimen and consequent prolonged hospitalization. They needed to escape through early discharge and became apathetic at the complete lack of change: “I just want to go out finish and ‘klaar’. There’s nothing more than that… I’ve stayed a long time here. I no longer want to be here. I want to be outside.”

According to Yalom (1980, p. 451), the vegetative form of existential sickness is the most extreme degree of purposelessness, and indifference that is commonly expressed in a person’s vocabulary. Such expressions manifest in cognitive, affective, and behavioural form. The cognitive is the severe state of losing enthusiasm for life, seeing no value in any of the activities and compounded by the inability to pursue further life goals; the affective is the feeling of constant weakness and chronic sadness, with periodic depression. With time, the person settles into indifference. Those with a developing vegetative syndrome are troubled by their existence and ask what is the point of their lives and many life activities, such as having a family or studying; why endure any deprivation while life is threatened by death. Yalom (1980, p. 452) writes that many institutionalized patients

27 There is an overlap between meaninglessness and freedom, particularly, the aspect of willing and desire. Hence Yalom (1980) states that meaninglessness is contaminated. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 111 are existentially ill, in a vegetative state of meaninglessness, but are generally referred to as schizophrenics.

Their words could not solve the crisis of meaninglessness because the situation remained unchanged: “Even if I get discharged I know I won’t be free, I have to continue with treatment until, until, until… I’ll carry on with hospital life but I’ll be outside and see different things. I still won’t be free.” They had a sense of futurelessness: “I’m tired of staying [here]; I don’t see where I am. I don’t see the future. I see nothing… I wish I could just die because I don’t see what I’m living for.”

The absence of meaning is a crucial cause in neurosis; in its severest form it may lead to a decision to end one’s life instead of facing perpetual suffering (Frankl, 1986, p. 26; Yalom, 1980, p. 422). One particular participant lost the will to live; he wished for a quick death once he had discovered no meaning in his existence – he saw no purpose in suffering. The cognitive component is meaninglessness and an inability to believe in the importance of anything one does or can imagine doing. Camus (as cited in Yalom 1980, p. 420) says that the most challenging philosophical question is whether to go on living once the meaninglessness of human life is fully grasped. He also said he had seen many people die because life was not worth living. Frankl (1986) writes that people are unlikely to survive if they do not find any meaning in their current suffering.

One participant was willing to endure the prolonged hospitalization and continue with treatment until she was cured. She was able to persevere and hope, developing a sense of meaning in her life and transcended her suffering: “It’s not easy to be here for a long time, but I keep on expecting a miracle will happen. I keep on hoping. The days are [passing] and we must be cured. So I keep on looking forward. I keep counting and saying maybe next week something will happen, it’s next week, next week. Next week becomes one month, then two, three, four, five months. I keep counting every day. I don’t get tired, hoping things will change.”

A human is a meaning-giving being; he/she must create meaning in life as a free and responsible being. Frankl (1986) states that although we cannot comprehend meaning in its entirety, we must accept that there is a coherent pattern to life and a purpose to our suffering. There is a relationship between meaning and suffering: in concentration camps those who were without a meaning did not survive, but those who needed to survive transcended the situation – they wanted to survive for others, e.g. their families, or needed to complete some unique project. When there is a sense of meaning, it gives rise to the values by which one lives (Frankl, 1986). Frankl (1986, pp. 43-44) says there are three crucial categories of values: creative, experiential and attitudinal. The attitudinal values were evident in this participant’s experience; she was able to maintain courage, hope and

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 112 faith. The most important aspect is the person’s attitude towards an unalterable fate. As long as a person is alive and remains conscious, he/she has to realize these values.

2. Concern over the indefiniteness of the discharge date. The crisis of meaninglessness showed in the participants’ persistent worry, pain and confusion about the indefinite nature of their discharge date: “Two years! Two years! Such a long time! When you’re arrested, you always know how long your sentence [will be].Here you don’t know, and you’re told nothing at all.”They were distressed by their unending situation; it was unfair and abusive: “I’ve stayed too long, in other words, it has abused me… How can we stay so long, 15 months! It means we’re in jail.” They despaired: “I’m still in hospital and there’s nothing I can do.”Frankl (1986, pp. 98-99) says that a person may be confronted by meaninglessness when he/she can’t see the end of a provisional stage in an existence and/or finds no logic in a faced situation.

They were greatly angered by the endless monotony of hospital life: “I have to eat porridge, make my bed, drink tea, and take my tablets. Then I’ll sit or walk to other medical wards, and afterwards back to my medical ward, watch TV, eat again and go to sleep. Tomorrow I’ll do the same. It goes on, just like thatevery day.”Meaning is important for life at all times (Yalom, 1980).

Their free time was a source of existential stress. They were unable to use it freely and have a sense of satisfaction or accomplishment: “Being here you sit and do nothing, nothing. You just do nothing… We drink the tablets and [spend] the whole day doing nothing… We wait for food, we eat, we sit and do nothing. Then we eat again and sleep.” They felt they were not engaged in any meaningful activities: “I’ve had enough of this hospital. I’m like a prisoner – I can’t do anything… I’m stressed that I’m here. If I was outside, I could do something.”

Free time is a problem, as it forces freedom on us. People with free time have too much time to ask disturbing questions. Yalom (1980, pp. 447-448) writes that meaninglessness is intricately interwoven with leisure and disengagement: the more one is engaged with the everyday process of living and surviving, the less likely the emergence of the question of meaninglessness. LTH with little structured activity and unlimited free time invites profound questioning of life’s meaning.

Human beings are creators of their own world/destiny, and create themselves through a series of decisions (Yalom, 1980, pp. 425 & 464). People tend to shy away from this life-task, and try to find meaning outside themselves or in materialistic things. People think that compulsive working, pleasure and accomplishment bring meaning; existentialists regard this as deceitful. Those who are compulsive workers tend to suffer what Frankl (1986, p. 28) calls Sunday neurosis – a state filled

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 113 with emptiness and lack of content in a day of idleness. People crave work to self-actualize and fulfil themselves, but this is not the answer.

As the participants had ample free time which they could not use in a satisfactory way, their days were characterised by boring minimal activities; they then turned inward for meaning. They realized that valuable time was passing and that they were losing out, with no engagement in different meaningful activities; their lives were stagnant and aimless: “My life is [at a] standstill. I’m not moving forward.” They lamented the loss of time: “I’ve stayed too long. I could have built two houses during the two years I’ve been here.” They were trapped: “We’re imprisoned here… I’m like a prisoner. I’m no different. I’m also dragging an iron leg, just like him [a prisoner patient in hospital].”

They were apathetic most of the time, but then talked about the prospects of premature discharge and began to focus on the anticipated future, wanting to extract meaning from secular activities. “I’m looking forward.”

They anticipated how they could bring meaning to their lives and those of others, expressing a need to be of assistance to others post discharge. They talked about work, particularly altruistic activities once they had been discharged, e.g. doing volunteer work at local clinics by giving health talks on DR-TB: “I can educate patients at my local clinic”, and charity work, helping other hospitalized DR-TB patients, paying hospital visits for emotional support and encouragement: “I’ll visit patients and bring stuff for them, spend time with them [and] encourage them”, and transferring or teaching vocational skills to others: “I must find young men and teach them bricklaying when I get discharged.”

Yalom (1980) mentions five secular activities from which human beings derive a sense of life purpose. Only one, altruism, emerged strongly from the participants. People affected by meaninglessness want to leave something valuable behind when they die, by bettering their lives in the service of others, or searching for new ways of improving their own lives or completing unfinished tasks. They want to feel they made a difference.

4.5. Conclusion This chapter examined themes emerging from the data. The focus of the study was the narration and description of the patients’ experience of being hospitalized for a prolonged period due to DR-TB within the existential framework, outlining the psychosocial impact, in relation to Yalom’s (1980) key existential themes, namely death, freedom, isolation and meaninglessness. The data revealed patients’ complex existential issues/problems. This study accepts that existential conflict flows from

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 114 confrontations with the inescapable givens of existence. These findings highlight that patients will always have to deal with the primary concerns of existence. It is rare that a social worker is able to examine these concerns in a pristine form when working with troubled patients. Chapter 5 follows with suggestions and recommendations from the data.

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Chapter 5: Summary & Recommendations

5.1. Introduction This chapter provides a summary of the main findings of this study and highlights the participants’ experience of long term hospitalization due to DR-TB within an existential framework. This is followed by a recommendation and conclusions based on the main findings of the study answering the research question and addressing the research goal and objectives.

5.2. Summary According to Research Objectives The study goal was to describe the experience of being hospitalized for a prolonged period due to DR-TB within an existential framework. This was achieved through conducting one on one interviews with the DR-TB patients who had been in hospital for periods of 12 months or more, to describe and understand this hospitalization experience and the existential implications. Four study objectives were formulated:

1. Narrate the hospitalization experience of DR-TB patients

2. Describe the hospitalization in relation to four key existential themes, namely death, freedom, isolation and meaninglessness (Yalom, 1980).

3. Outline the psychosocial impact of long-term hospitalization for DR-TB in relation to these existential themes.

4. Expand the knowledge base of social workers regarding the existential issues associated with working with DR-TB patients who are hospitalized for extended periods.

5.2.2. Objective 1: Narrate the Hospitalization Experience of DR-TB Patients In answer to the first objective, which is to narrate the hospitalization experience of DR-TB patients, the findings show that the hospitalization experience was distressing and overwhelming. Rather than merely summarising the results presented in section 4.3, I here discuss the various emerging themes in a more integrated way, with the more formal themes indicated in brackets.

Hospitalization caused disruptive changes in their lives, bringing many challenges and accompanying losses, over which they constantly grieved (Loss).The entire experience was extremely difficult for the participants as they were isolated in a strange and restricted hospital environment, away from their familiar environment, routines and social roles (Isolation and Loss of

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 116 relationships, particularly absence from homes and roles).They were unable to have meaningful interactions with others and the outer (larger) world and were forced to focus on hospital routine and depend on others for care and support (Isolation and Unchanging time).

Their lives were out of their control; they perceived that their lives were regressing as they were unable to live according to their own plans and decisions (Loss of perspective).This evoked sense of entrapment (Isolation).They also felt that their lives had no direction and yearned to resume their lives and have a sense of purpose (Loss of perspective).They all struggled to adapt, cope and accept their hospitalization and its demands and were constantly worried about their lives, including the progress and outcome of their hospitalization, and were very unhappy. This demonstrated how difficult and demanding, painful and worrying hospitalization is and that it is still perceived with apprehension or it causes a lot of anxiety for many people (Anxiety, hospitalization and death).

Furthermore, the participants’ overwhelming experience from long term hospitalization (LTH) was aggravated by uncertainty and endless waiting since they did not know when their hospitalization would come to an end. Such forced prolonged waiting was devastating–they were forced to wait, not knowing what to expect, yet on the other hand, had to hope that something good would happen. All the great pain, confusion and helplessness led them to perceive themselves as living in suspension and they then struggled with fear, anxiety, death, meaninglessness and hope (Time and Waiting time).Though the participants experienced great pain, anxiety and extreme unhappiness during their LTH (Hospitalization, anxiety and death),the findings indicated that the participants managed their pain differently. They adopted defence mechanisms individually and on different levels in some instances to cope with or avoid the pain and the inner conflict from the LTH, but all of them felt constant pain and inner sadness (Time and existing one day at the time).

The findings illustrated that the participants were also worried about the contagiousness of the disease, leading them to develop fears of social stigmatization and labelling by others (Stigma). They perceived the hospital as the place of safety. This aspect fostered feelings of hope and they endured hospitalization, in anticipation of the ultimate cure.

5.2.1. Objective 2: Describe Hospitalization in Relation to Key Existential Themes The second objective, which is to describe the hospitalization in relation to four key existential themes, namely: death, freedom, isolation and meaninglessness (Yalom, 1980), recognised the following:

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Death. The participants experienced great anxiety due to the perceived threat to their existence, particularly the possibility of death and being reduced to nothingness. It has been shown in the literature that the death fear is ubiquitous, and we react with mortal fear, but it is particularly prominent in the hospitalized population.

The incidents and different procedures in their hospitalization provoked death anxieties adding to the enormous stress of being in hospital for a long time. The participants experienced varying levels of death anxiety and displayed varying emotional reactions including pain, fear and sadness. The hospital procedures such as routine medical rounds, receiving feedback on test results particularly, culture TB sputa and their medical condition from the doctors constituted strong precipitators of death fears resulting in high levels of anxiety.

The death anxiety tormenting the participants was not readily visible, but concealed by their behaviour. Such death anxiety was concealed in depressive symptoms or depression, showing the universality of human reaction to death anxiety. Hypochondria, compulsive behaviour and isolated incidents of the depersonalization syndrome were evident, particularly in one participant, showing the uniqueness of experience and interpretation of one’s life situation in qualitative research, very important in a phenomenological approach.

The participants were overwhelmed and frightened by confrontation with their own death anxiety. They adopted death denial defences by clinging to their specialness as well as a belief in the ultimate rescuer. They reacted with anger and blaming behaviour towards others, especially the nurses, doctors and their own family members when they were overwhelmed and not coping with death anxieties and the impending threat to their existence. Denial defences are not effective because they can fail at any time and expose the overwhelmed person. In such instances anger is manifest in a person and can be projected to those around them. In hospital settings, doctors and other professional health staff are the recipients of such displaced anger emanating from death fears.

Both the findings and literature acknowledge that denial is a temporary function and therefore it does not mean that the patient who is using denial defences will not be happy or relieved. The findings showed that there were some times when the participants were able to be happy and gain some insight and acceptance into their situations, even though this was temporary.

An understanding of death anxiety is vital for the social worker as it is a key to the patient’s behaviour and reaction to death and death anxiety, and the person’s level of coping. Death anxiety is embedded in the unconscious, rarely encountered in its purest form, manifesting in a disguised way. It is therefore important for the social worker to be able to notice this and assess accordingly.

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Unless the social worker understands the symptoms of death anxiety, it will be difficult to understand the patient’s behaviour, which is detrimental to the patient and therapeutic process.

Freedom. The findings show that the participants experienced the theme of freedom which challenged them. They adopted denial defences. They failed to act but constantly blamed others and external factors, considering themselves victims.

Although the participants struggled with responsibility assumption in some areas of their lives, two participants were able to do so in other areas. This is confirmed in the literature; it is possible for a person to exercise responsibility in certain areas and struggle, fail or be unwilling to do so in other areas. This experience enabled them to gain awareness and a better understanding of their situation and their responsibility by reflection. This brought a shift in perspective and enlightenment leading to an easier acceptance of their situation. They were motivated to take control over their situation, thoughts and attitudes, illustrating that it is possible for a person to transcend any unalterable situation.

The participants confronted the theme of freedom in their LTH experience. They really struggled to understand and manage this state of freedom by taking responsibility through their actions, decisions/choices and attitude towards their hospitalization.

Isolation. The findings indicated that the participants experienced a fundamental existential isolation resulting from the LTH, realizing that they were absolutely alone in the world. This experience of existential isolation was distressing and difficult to accept and confront. They used isolation denial defences to avoid this realization and its constituent pain, anxiety, fear and deep loneliness by constantly seeking contact to be part of the larger whole.

Existential isolation has the potential to overwhelm human beings entirely but it can be a source of potential growth and wholeness. It has great therapeutic relevance.

Meaninglessness. Hospitalization forces a person into a crisis of meaninglessness; prolonged hospitalization aggravates this. One participant particularly was tormented by the idea that one could not expect anything from life, losing the will to live, wanting premature death. In contrast, the other two participants, despite their meaninglessness state, were not overwhelmed and wanted to continue to live. The findings demonstrated that hope helped these participants through the LTH. They continued to project themselves into the future wanting to complete their life tasks and improving their lives. This indicated the importance of hope. The findings also demonstrated that the participants wanted to be of service to others post discharge by engaging in altruistic activities, confirming that people who are experiencing a meaninglessness crisis and are overwhelmed by it An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 119 still want to be of service to others and leave behind something valuable, to feel that they mattered and would be remembered by what they had done.

5.2.3. Objective 3: Outline the Psychosocial Impact of Long-Term Hospitalization The third objective, outline the psychosocial impact of long-term hospitalization for DR-TB in relation to these existential themes, illustrated that the LTH for DR-TB had a psychosocial impact to the participants. Hospitalization as an external event brought disruptive change causing them to deal with devastating demands: (1) isolation from their own familiar social environment, (2) separation from family, friends, loss of social status, and (3) a lack of or limited support from their families causing great pain, anxiety and sadness. This meant they had lost control and independence. The findings acknowledged the role of attitude in human existence, and showed that the participants experienced psychosocial impact and disruption in the area of social interaction. The participants’ interpretation of their situation played an important role in creating stress and anxiety for themselves. Their subjective perceptions and interpretations of their hospitalization in interaction with others caused them to believe that they were stigmatized and labelled by others. They were extremely unhappy and annoyed.

The participants were also devastated by being isolated in a constricted hospital environment, where they could not engage in meaningful interactions with others and remain engaged in society occupying and fulfilling their social roles according to their plans and decisions. They grieved the loss of social status or roles, relationships with own families and friends, financial independence and control and were faced with dependency. This experience of isolation was perpetuated by little support from their family, which was influenced by the family’s poor socio-economic status, geographical location or distance from the hospital, and/or by lack of interest in the patient’s hospitalization; they withdrew themselves and stopped contact. There were one or no physical hospital visits per month; even one visit per month was not guaranteed because of financial constraints. In addition, where the family was able to visit, they were unable to bring good food, leaving the patients to depend on hospital food most of or all the time. This caused tremendous pain. The findings showed that although physical hospital visits were needed and important, such interaction produced only brief pleasure. They also had negative effects evoking feelings of deep loneliness, abandonment, being lost and angry. This experience and emotions were compounded by the issue of time – they were faced with interminable and forced waiting. They did not know what to expect, so their uncertainty was overwhelming. They become irritable and in certain instances lost hope of recovery because of their sputum results that were positive all the time, and the pain was indescribable. They did, however, oscillate between hope and hopelessness. An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 120

5.2.4. Objective 4: Expand the Knowledge Base of Social Workers The fourth objective is to expand the knowledge base of social workers regarding the existential issues associated with working with DR-TB patients who are hospitalized for extended periods. In response to this objective, the findings showed that the participants experienced existential problems due to LTH; they constantly worried about their life, both the present and the future, and reacted with complex emotional reactions, including anxiety, fear, disappointment, uncertainty, unhappiness, pain, irritation and confusion. They experienced internal conflict which was manifested in their behaviour. Their distress and internal conflict was not readily visible, but appeared in disguised forms. Yalom (1980) and Frankl (1986) emphasize that the clinician’s knowledge and skill are vital in identifying and understanding such behaviour and its role. In addition, they state that the clinician must be attentive and attuned to such existential themes. It is imperative to have both knowledge and understanding of the aim and perspectives of this theoretical approach to facilitate effective therapeutic encounters. The existential framework provides orientation on observing and understanding such behaviour. The clinical social worker has to strive to understand the inner world of the patient from his/her personal frame of reference without any presuppositions.

Such knowledge and skill will expand social workers’ knowledge base and will teach social workers how to manage the therapeutic relationship when patients raise existential concerns. The findings showed the distress and overwhelming nature of these existential problems from LTH. These experiences illustrated that these existential concerns are of paramount therapeutic relevance as patients need good and effective support during their LTH. Yalom (1980) indicates that when patients are distressed and overwhelmed about their situations, they tend to open up to social workers, while they will conceal such information from their doctors. The social worker can play a critical role giving the most needed care and support to the patients by diligently addressing the existential concerns raised. Training of social workers on this approach will enable them to understand, be aware of and attuned to the patient’s behaviour within an existential framework, diagnose and treat accordingly. Such new and additional information will enhance the social worker’s counselling skills and will increase and develop a deep understanding of patients and effectively deal with the sources of their emotions and behaviour. It will also increase social worker’s confidence and competence, leading to better professional self and development.

5.3. Recommendations The findings recognised that the participants experience existential problems during their LTH. The findings have shown that the participants are not able to deal with these important existential

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 121 problems on their own. Therapy based on the existential approach will thus play a very critical role and may be helpful in exploring and dealing effectively with these existential concerns. Therapeutic intervention, with necessary care and support, will help the patients become aware of and understand their situation, including their own behaviour and emotions and help them confront and manage their situation effectively achieving change and wholeness.

It is important for the social worker to have adequate skills and knowledge to practise the existential approach. It is suggested that social workers in health care receive the relevant training to acquire the necessary knowledge and skill. The training will encourage and provide opportunities to reflect on their practice, including how they conduct and engage in this therapeutic process with clients. They will be able to conduct, facilitate and maintain therapeutic encounters with patients raising fundamental existential concerns without avoiding them, being threatened or overwhelmed by them or engage in selective attention to existential concerns. This will develop confidence, competence, and professional self-awareness.

Yalom (1980) indicates that most therapists are resistant to explore existential issues within the therapeutic encounter as they are overwhelming, evoking a sense of their own vulnerability, or they deliberately avoid them since they do not see any need to explore them, or simply are unable to recognise them. This learning process will add new knowledge and skill to social workers and develop an awareness of this approach increasing competence and the capability to work confidently and sensitively with these existential problems. It will then teach social workers how to maintain the professional relationship when patients raise these existential issues. Overall, this training will enhance the client-helper relationship, creating effective outcomes for patients; help patients to confront these issues; increase social workers’ self-awareness, knowledge, skill and growth in therapeutic skills and the professional self; and protect patients, ensuring that client/helper relationship is therapeutic and within professional boundaries.

How could medical social workers be trained on the existentialist approach to the therapeutic process? It is suggested that it is integrated into the post graduate curriculum for clinical social work. It could be included as part of training on theoretical models and/or form part of an internship programme. The University of Johannesburg’s social work department is teaching eclectic methods and theoretical approaches to social work students which are valuable and effective for social work therapeutic process and intervention. The social work profession has taken on other theoretical approaches from other disciplines.

It is important that a supportive, caring and non-harmful hospital environment is created to protect patients and to increase the awareness and understanding of all the health staff on the numerous

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 122 existential issues faced by the patients and the effect on them, raise awareness of the abnormalities of social interaction and its harm to patients to encourage positive change in relations. It is suggested that this awareness and understanding is done through staff training. It is suggested that a training programme be developed and endorsed by the relevant structural bodies, to be implemented in the hospital to reach all staff, recognising that existential concerns are of therapeutic relevance. It is, however, acknowledged that this exercise can be costly and time consuming, adding to the strain already present in the public health care system and public resources. It is nevertheless hoped that this identified element opens further research in the field of social work.

Considering that the mental health of the patient is also important during hospitalization, and should not be ignored, in addition to the above recommendations, the social worker can also use group therapy intervention with DR-TB patients. The purpose will be to encourage/assist patients to identify stressors in their hospital life. The common existential questions raised by patients would be used as a point of departure. This intervention can reduce the development of psychological stress, may enable the social worker to detect risks early in the patient, raise awareness and understanding, in patients about what they are facing and it will allow the patients to offer empathetic support to others and vice-versa. This will improve social work intervention to patients.

In the light of what is learned from the study about the psychosocial impact of LTH for patients, it is recommended that an assessment tool to identify the complex psychosocial needs of patients to prolonged hospitalization from DR-TB needs to be developed. This tool will ensure that the patients’ psychosocial needs are given necessary attention, and ensuring that patients receive continuous emotional and social support, and with easy access to the most needed resource systems. This study recognised that although clinical needs of patients are important, the psychosocial wellbeing of the patient is equally important and should not be ignored.

Apart from the existential crisis that patients experienced as precipitated by prolonged hospital stay due to DR-TB, the study also showed that certain factors such as treatment side effects, patient/nurse/doctor relationship and attitude and stigma also engendered feelings of pain, suffering and anger in patients. These factors are important components of management and treatment of DR- TB., and must be managed effectively/accordingly. Patient and staff relationships are important and require co-operation and understanding of involved parties. Absence of that can lead to negative behaviour on either the patient or staff, which will in disrupt patients’ relations with staff. Therefore the dynamics of the role behaviour on patients and staff are a key focus for social work intervention, to ensure quality patient care and that staff is more responsive to the needs of the patient and to minimise pain and suffering of the patient during hospitalization. So in the light of this, the social

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 123 worker can intensify nurse communication relationship between the social worker and the nurse, and the relationship between social worker, nurse and patient through group therapy for improved social work intervention. The former will be one to one basis social –worker intervention to elicit information on the varying difficulties encountered in treatment of patient. The latter, will constitute the main focus of the group intervention with patients, perhaps co-facilitated with the nurse in a non-directive way to talk about the difficulties of patients during hospitalization. This intervention will address emotional difficulties of the patients, and at the same time educate and clarify misconceptions on patients beliefs (for example about treatment side effects, forced isolation) and empower nursing staff on communicating and understanding better the patients faced problems. This will create support to patients in a relaxed setting, and establish solidarity between patient and staff. The ultimate aim of such intervention would be to draft a training programme which will address the challenges faced by both staff and patients during hospitalization of treatment and management of DR-TB.

There is no sufficient support for DR-TB patients as compared to other long term diseases. Therefore support must be put in place like it is the case with other life threatening disease (e.g. HIV/AIDS). Group therapy must be structurally set up to offer ongoing emotional support for patients, and to assist them to deal with disease, hospitalization and its effects, to ensure adjustment and re-integration into the community and family. This type of intervention could lead to the model of care being developed to ensure continuity of service/care from admission to hospital until treatment completion, which can be piloted and then rolled out to other provinces in South Africa, with the support of relevant high bodies overseeing the management and treatment of DR-TB. This may improve service delivery for DR-TB patients.

5.4. Conclusion The study managed to answer the research question and address the goal and the objectives. Relevant and significant theoretical information was generated from the rich and openly shared experiences by the participants and was supported and placed within literature. The shared experiences by the study participants created a palpable portrait of the experiences of the LTH due to DR-TB and the implications for social work practice in the health care, social work curriculum or training and the DR-TB hospital. The study produced an action guideline in relation to the study findings, and pointed out theoretical purpose for social work practice within this specialised area.

Central to the findings of this study is the fact that the experience of prolonged hospitalization due to DR-TB is extremely distressing and overwhelming. The study revealed the importance and the relevance of the existential framework in understanding and dealing with the resulting psychosocial

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 124 problems. The social worker can therefore play a critical role in offering care and support to the patients through therapeutic intervention based on Yalom’s (1980) existential framework which is relevant in the multidisciplinary team. Finally, the study demonstrated that the hospitalized patients always raise existential issues, which can be explored, understood and discussed through the use of an existential approach by the medical social workers to promote responsibility, awareness and change, but the responsibility assumption and personal change is the responsibility of the individual patient.

An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 125

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Appendixes

Appendix 1: Research Information Leaflet and Informed Consent

Dear Participant

My name is Paulina Kodisang. I am a current master’s student at the University of Johannesburg. One of my courses requires that I conduct a small research project at my workplace; you have been identified and I am asking you to participate in that project. Your participation in this study is entirely voluntary.

The research project aims to learn what it is like for you to be hospitalized (in DR-TB Hospital) for such a long time due to drug resistant tuberculosis (DR-TB). I am interested in learning about this (subject/topic) from you and to understand better the world from your point of view. That will help to get a better understanding of how to work in a better way with hospitalized DR TB patients in the future.

Your participation in this research project will entail one face-to-face interview lasting about 60 to 90 minutes each. The interviews will be audio taped. Whatever you tell me will be kept safe and confidential.

I shall write up a report at the end of the research study for the course tutor. Your identity as a participant will be protected; I will not use your name(s) anywhere in the report. Quotations from the interview may be used in the report – this will be used anonymously. Please understand that you may withdraw from the study at any time, without prejudice.

The results of this research study may be useful in developing better understanding of the experience of long term hospitalization for DR TB patients in relation to existential issues. You, together with the other participants will be called at the end of the study for briefing on the findings of the study.

I appreciate your willingness to give your time to participate in this research study to help me to learn form you about the experience of being in hospital for long term due to DR TB. Your cooperation and contribution in this study would be very helpful.

If you have any questions, please feel free to ask me. I can be contacted at 011 531 4463/ 082 481 6407 or consulted in my office.

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______

I have read the above and discussed it with Paulina Kodisang (the student). I understand the study and I agree to participate.

______(signature)

______(date)

______(Student’s signature)

______(date)

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Appendix 2: Exemplar of the Interview Process

This is an extract from Dikeledi’s original interview transcript.

The interview was opened by the student by asking a ‘major opening’ question.

St= Student, P=Participant (Dikeledi).

Line Interview Process 01 St:Thank you for coming. So, tell me what it is like for you to be here for such a long time due to DR TB. 02 P: instead of going out and infecting our own families. So being here, I can see that, like we are imprisoned, I don’t disagree with that, we are imprisoned. It is not nice – the food here is not nice and tasty [appetizing]. But for the sake of getting cured and in the end going out of here healthy. Just like me, ‘neh’, I have, I am having a child; he/she is small, so I will in the end infect him. So it is better that I go out here being cured and healthy, unlike going out and infecting my small child and at the end of the day I will still have to come back here to visit and check on him. Ultimately I will be here again – so in the end it will be him/her, me and my family all here, in the hospital. [The P was talking fast here – it felt strange especially at the beginning, and as if it was a pre-planned speech/ thought. But as she progressed I observed that it was not easy for here to talk about these things - it was in fact a scary and uncertain experience. I felt anxious too]. In the last statement she made, I sensed a feeling of fear – I noticed that she is afraid and pre-occupied with the possibility of infecting most important people in her life, but also of getting re-infected herself. Is it the feeling of shame, rejection, and stigma]. 03 St: so, in a way, you are saying that it is not easy for you to be here. 04 P: It is not easy, but it takes day by day. That it is not easy at all. On the other days you cry and on others, you wake up and laugh. The good thing is that the days are going on, as long as you are taking your own treatment. You cry and feel better, you feel better and okay, you cry and relieve the PAIN that it is there inside. So, mmmm..., I am benefiting and my family too is benefiting, and me, in that I am able to get proper treatment, though it is for a long time. It is frustrating seriously, but there is nothing we can do [a sense of helplessness]. But the thing is that we must go out here being cured [a sense of hope]. The good thing is that we must be cured. 05 St: So, you have said that some days you cry and on other days you feel different and you are able to laugh. You have also said that it is not easy and often cry to take the pain that it is inside you away. Tell me about that pain that is inside you. 06 P: Okay, it is like; the days are not the same, especially when the doctor is present in the ward – when the doctor enters the ward that is when you expect something. You expect the doctor to tell you something – you expect the doctor to tell you that you are going home. So even if, ‘eish’, she tells you that the results are not okay or ready, even though you know yourself that the results takes a long time, but you keep on expecting something, that a miracle will happen (she giggled and look at me ;making eye contact for the first time since the beginning of the interview process) or something. Something, like, she can tell you that you are right, that you are okay and you can go home or you can get a pass out or you can get a discharge. Then you will find out that when I go for doctor’s consultation during the ward round, I find that I do not have pain or feel anything in my body. I get inside and find

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Line Interview Process the doctor, and ask her, doctor, then today? The doctor will then say to you, your results are not yet here. And at that time you, yourself actually know that my results are ready and not present as yet (slight/ short giggle). Then you see (brief pause) that is painful (brief pause), you go out of the consulting room feeling sad, but then you cry. You feel that PAIN (she was talking while she was placing her right hand on her heart and holding her left hand into a loose fist) [I think that the nonverbal behaviour was resembling and marking the very same pain she was talking about]. Like me, most of the time when I go out of the doctor’s consulting room, I come out crying, I cry, even if she tells me that Dikeledi [name has been changed] your results are positive, even if she tells me that my results are not available as yet. The thing is that I will be in the state where I don’t know what to expect or what I want. If she tells me that my results are positive, I have to accept it and cry and also, on the other hand, when she says my results are not available, I still have to accept. In that case I also cry. It happens that you don’t know what to do. Most of the time I keep on hoping, hoping that something will happen. 07 St: You said that you do not know what to expect? 08 P: Yes, it is like you keep on, u keep on (pause) ‘ooh’, how can I put this...? You stay on not knowing what to expect, you are IN SUSPENSION – like you don’t know what to expect, you don’t know what you will expect; mmmn, YOU STAY THAT WAY (she said this last sentence with a low voice) [feeling of infinite uncertainty as described by Franklin; being and time] 09 St: minimal encouragements (mmmn and nodding). 10 P: It is like, as for me, I like to cry - I am a person who likes to cry, I cry a lot. So by crying, this PAIN fades away. You see. Even if you remember that eish the doctor has said my results are positive and I am supposed to wait such and such a time, you will still cry, but that particular day will pass. (Pause). 09 (Interruption by student..., tells me about this pain...) 10 P:and feel better. (Giggling), this pain... 11 St: I have noticed that you keep talking and referring to this pain, this pain. Now I want to understand what you mean by this pain. 12 P: It is like you want to go. Sometimes, like I feel pain and that pain, I feel pain in my heart. I think about people who are outside, I think about my family, you want to talk .I think about my friends, I have friends outside. Fine I have friends here but I choose who to talk to and not. I have friends, they are supportive and always encouraging me; telling me that I will be well and everything will be okay. They say you will be right. I will eventually see what they are saying to me. I will say also I will be right. But then I will cry (giggling). Like, one of my friends will say cry so that the pain that is inside you can go out, that thing that you are feeling inside can go out ( she stressed the word, cry when she said this. She also demonstrated with both of her hands. I think, this has displayed the intensity of what she was saying). 13 St: can you tell me more about that thing that you are feeling inside of you which makes you to cry almost all the time. 14 P: Like, this pain, this pain (breathing out heavily) ‘eish’, I don’t know how I can explain (saying that with a low, calm tone, she was also looking up to the ceiling and rolling her eyes). This pain. There is a time where, ‘eish’, you will feel (pause), you will feel (pulling words), like you are tired, on other days you don’t know yourself ; you don’t know what to say (giggling) ‘aaah’, this pain I don’t know how to explain or to relate it to you. In fact it is not easy that I can be able to describe it in the way that... (Omitting words), but it is painful, it is hurting – it is really hurting (her eyes become reddish and with a wobbly voice was sluggish). But through crying I feel better and get used to. I cry and go to sleep and when I wake up, I will be feeling better. And even the day after that I will still wake up and laugh. I forget about all that

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Line Interview Process But when the doctor comes, it is like ..., my heart hurts. It is as if, I mean, ‘eish’, I don’t know what to expect today (pause). It is like, (pause) (student’s minimal encouragement), this pain come forth or it is present very week. It is like, when I see the doctor, immediately when they say the doctor is here fora ward round, ‘ eish’ I feel somehow – I don’t know what to expect. I wonder what she will say today, I wonder what news she will be bringing for me today. You see (with a low and sluggish voice).

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Appendix 3: Exemplar of Coding

The following exemplar is taken from Dikeledi’s interview, the transcript of which was provided in Appendix 2.

Line Interview Process Coding 01 St: Thank you for coming. So, tell me what it is like for you to be here for such a long time due to DR TB. 02 P: instead of going out and infecting our own Don’t like being her families. So being here, I can see that, like we are imprisoned, I don’t disagree with that, we are here for healing/life imprisoned. It is not nice – the food here is not nice no choice and tasty [appetizing]. But for the sake of getting here to protect families cured and in the end going out of here healthy. Just we are imprisoned like me, ‘neh’, I have, I am having a child; he/she is it is not nice being here small, so I will in the end infect him. So it is better here for cure that I go out here being cured and healthy, unlike here to protect children going out and infecting my small child and at the end of the day I will still have to come back here to Cost-benefit analysis28 visit and check on him. Ultimately I will be here again – so in the end it will be him/her, me and my Once-for-all-cure family all here, in the hospital. [The P was talking fast here – it felt strange especially at the beginning, and as if it was a pre- planned speech/ thought. But as she progressed I observed that it was not easy for here to talk about these things - it was in fact a scary and uncertain experience. I felt anxious too]. In the last statement she made, I sensed a feeling of fear – I noticed that she is afraid and pre-occupied with the possibility of infecting most important people in her life, but also of getting re-infected herself. Is it the feeling of shame, rejection, and stigma]. 03 St: so, in a way, you are saying that it is not easy for you to be here.

28 COST BENEFIT ANALYSIS Seems to be weighing the costs of the LT hospitalisation versus the benefits of LT hospitalisation. Feels like a meaning making activity, trying to make sense of the costs of LTH by highlighting how it will be beneficial in the long term. ? Yalom’s theme of meaning? Benefits in terms of: • The family Costs in terms of : • The length of stay An Existentialist Study on Prolonged Hospitalization for Drug Resistant Tuberculosis 137

Line Interview Process Coding 04 P: It is not easy, but it takes day by day. That it is Not easy not easy at all. On the other days you cry and on Crying others, you wake up and laugh. The good thing is Laughing that the days are going on, as long as you are taking The days are going on your own treatment. You cry and feel better, you Cry to relieve the pain feel better and okay, you cry and relieve the PAIN that it is there inside. So, mmmm..., I am benefiting and my family too is benefiting, and me, in that I Cost-benefit am able to get proper treatment, though it is for a long time. It is frustrating seriously, but there is nothing we can do [a sense of helplessness]. But It is frustrating the thing is that we must go out here being cured [a Helpless to change situation sense of hope]. The good thing is that we must be Here for cure cured. 05 St: So, you have said that some days you cry and on other days you feel different and you are able to laugh. You have also said that it is not easy and often cry to take the pain that it is inside you away. Tell me about that pain that is inside you. 06 P: Okay, it is like; the days are not the same, the days are not the same especially when the doctor is present in the ward – expect good news from the when the doctor enters the ward that is when you doctor expect something. You expect the doctor to tell you something – you expect the doctor to tell you that you are going home. So even if, ‘eish’, she tells wish to go home you that the results are not okay or ready, even though you know yourself that the results takes a long time, but you keep on expecting something,thata miracle will happen (she giggled keep on expecting something and look at me ;making eye contact for the first good (in suspense) time since the beginning of the interview process) wishes for a sudden change or something. Something, like, she can tell you that of situation you are right, that you are okay and you can go home or you can get a pass out or you can get a want cure discharge. Then you will find out that when I go for doctor’s consultation during the ward round, I find that I do not have pain or feel anything in my body. I get inside and find the doctor, and ask her, doctor, then today? The doctor will then say to you, your results are not yet here. And at that time you, Expecting to hear something yourself actually know that my results are ready good from the doctor (being and not present as yet (slight/ short giggle). Then in suspense) you see (brief pause) that is painful (brief pause), you go out of the consulting room feeling sad, but It is painful then you cry. You feel that PAIN (she was talking Feeling sad (sad) while she was placing her right hand on her heart Crying and holding her lefthand into a loose fist) [I think Feeling pain (it is painful) that the nonverbal behaviour was resembling and marking the very same pain she was talking about]. Like me, most of the time when I go out of the doctor’s consulting room, I come out crying, I cry,

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Line Interview Process Coding even if she tells me that Dikeledi [name has been Cry most of the time/ often changed] your results are positive, even if she tells me that my results are not available as yet. The thing is that I will be in the state where I don’t know what to expect or what I want. If she tells me that my results are positive, I have to accept it and cry and also, on the other hand, when she says my Don’t know what to expect results are not available, I still have to accept. In or want that case I also cry. It happens that you don’t know Have to accept the situation what to do. Crying Most of the time I keep on hoping, hoping that Helpless about the situation something will happen. Keep on hoping for something positive 07 St: You said that you do not know what to expect? 08 P: Yes, it is like you keep on, u keep on (pause) ‘ooh’, how can I put this...? You stay on not knowing what to expect, you are IN SUSPENSION Don’t know what to expect – like you don’t know what to expect, you don’t know what you will expect; mmmn, YOU STAY THAT WAY (she said this last sentence with a low Remain in suspense voice) [feeling of infinite uncertainty as described by Franklin; being and time] 09 St: minimal encouragements (mmmn and nodding). 10 P: It is like, as for me, I like to cry - I am a person Cries frequently who likes to cry, I cry a lot. So by crying, this Cry to relieve the pain PAIN fades away. You see. Even if you remember that eish the doctor has said my results are positive and I am supposed to wait such and such a time, Wait for a time/period you will still cry, but that particular day will pass. Crying (Pause). The days go on 09 (Interruption by student..., tells me about this pain...) 10 P:and feel better. (Giggling), this pain... 11 St: I have noticed that you keep talking and referring to this pain, this pain. Now I want to understand what you mean by this pain. 12 P: It is like you want to go. Sometimes, like I feel Want to go pain and that pain, I feel pain in my heart. I think Hurting about people who are outside, I think about my Miss people, friends and family, you want to talk .I think about my friends, I family outside have friends outside. Fine I have friends here but I Want to talk to friends and choose who to talk to and not. I have friends, they family are supportive and always encouraging me; telling Sense of belonging/getting me that I will be well and everything will be okay. support They say you will be right. I will eventually see Hoping for cure what they are saying to me. I will say also I will be right. But then I will cry (giggling). Like, one of my friends will say cry so that the pain that is Crying inside you can go out, that thing that you are Crying to relieve the pain feeling inside can go out ( she stressed the word, cry when she said this. She also demonstrated with

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Line Interview Process Coding both of her hands. I think, this has displayed the intensity of what she was saying). 13 St: can you tell me more about that thing that you are feeling inside of you which makes you to cry almost all the time. 14 P: Like, this pain, this pain (breathing out heavily) Hurting ‘eish’, I don’t know how I can explain (saying that with a low, calm tone, she was also looking up to the ceiling and rolling her eyes). This pain. There is a time where, ‘eish’, you will feel (pause), you will Tired at times feel (pulling words), like you are tired, on other days you don’t know yourself ; you don’t know Don’t know oneself what to say (giggling) ‘aaah’, this pain I don’t Don’t know what to say know how to explain or to relate it to you. In fact it is not easy that I can be able to describe it in the Not easy way that... (Omitting words), but it is painful, it is It is painful hurting – it is really hurting (her eyes become It is hurting reddish and with a wobbly voice was sluggish). But through crying I feel better and get used to. I cry and go to sleep and when I wake up, I will be Crying to relieve pain and feeling better. And even the day after that I will accept the situation still wake up and laugh. I forget about all that Cry to relieve the pain But when the doctor comes, it is like ..., my heart Laughing hurts. It is as if, I mean, ‘eish’, I don’t know what to expect today (pause). It is like, (pause) (student’s Hurting minimal encouragement), this pain come forth or it is present very week. It is like, when I see the Don’t know what to expect doctor, immediately when they say the doctor is here fora ward round, ‘ eish’ I feel somehow – I Feeling pain every week/ don’t know what to expect. I wonder what she will hurting every week say today, I wonder what news she will be bringing for me today. You see (with a low and sluggish Don’t know what to expect voice). (being in suspense)

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Appendix 4: Exemplar of Developing Categories/Themes

The following exemplar is taken from Moagi’s interviewtranscript.

Line Speaker Interview Process Coding Themes P01 Paulina Tell me what is like for you to be here, in hospital for such a long time... P02 Moagi Eh man, I am ill-treated in Feels ill-treated He thus feels harm and hurt this hospital, I am really ill- Feels ill- treated by being in hospital treated here - the reason is Not able to go # 02: I am no longer able to that I am no longer able to home go home,- shows theme of go home, there is no one Have no support isolation [ being extracted who is supporting me Having no from familiar environment anymore, my young brother, visitors/family which is his home, he is thus T has ran away, he stopped not visiting mourning the loss of home visiting. I wonder if he is got anymore1 and also, implicitly, loss of a piece job or what. But ?? independence] even if he has one, he cannot work all the time. [need for # 02: there is no one who is fusion]I have asked my supporting me anymore, my sister, A, about his young brother, T has ran whereabouts. She told me away, he stopped visiting.- that he has lost his phone. feeling of loss of family, and She said she was also no support from the family; wondering because she used thus experiencing a sense of to call him but could not aloneness reach him on his cell number, until he, T, phoned her the other day and she learnt then that he had lost his phone. You know this thing is hurting me.He used to come at least two weekends in a month [mourning loss of relationship and contact/interaction with his brother, that is family] when J[Moagi’ youngest brother, who is now late] was still here in the hospital. It means that he was actually coming to see J and not me [feeling of disappointment and?? fear of abandonment]. P03 Paulina You are saying that this thing is hurting you... P04 Moagi Yes, it is hurting me and it is Feeling hurt Loss is expressed here in obvious; a lot of my things Possessions are terms of the inability / are getting destroyed at destroyed restriction to perform

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Line Speaker Interview Process Coding Themes home as there is no Want to go out desired activities, thus supervision. Once I get out of hospital leading to lack of control of hospital and fix Want to repair over the situation → the everything, they [his goods at home experience is hurting and family/siblings] will start to Lack of family frustrating to him. He seems talk and comment - they will support and also to be having implicit say you could have done this cohesion anger towards the way and that here or you were Family is things are, i.e. the family is not supposed to do this and inconsiderate not worried or concerned. that here. But all the things at home are getting destroyed in their presence; in front of them, it is like they are just onlookers. P05 Paulina You have said that there is no one who is supporting you now. Tell me what you mean by this? P06 Moagi There is no one who is Have no support # 06: There is no one who is supporting me now. There is Have nobody supporting me now. There is no one. At home there is my Cannot be no one.- seems youngest brother, C, who is dependent on frustrated/annoyed by being very problematic; he drinks alone→aloneness a lot and smokes dagga. Pause. You see this RDP houses are not real houses, they are not strong at all. If it can happen Needs someone that I take a hammer and hit to depend on/ it three times, the wall will trust fall down. So it is important that there must be someone, Needs a a woman who is responsible dependable enough to look after my person1 home – a responsible person who is able to pay attention to everything that is happening around, for instance if they are building or renovating the house, she can be able to notice how many bags of cements and Do not know bricks are being used, such what to things, you see. [Pause and do[feeling shaking his head while overwhelmed by looking down]. Eih man, the situation] you know what,[with a very Do not know low voice] I don’t know what to do [? what to do in this situation, I Sense of don’t know what to put helplessness] together, eih [ long pause]

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Line Speaker Interview Process Coding Themes P07 Paulina What do you mean by that? P08 Moagi I can see that all the troubles Feels weighed Grieving the loss of family and suffering are upon my down by the and feels disappointed or shoulders only. They [his situation annoyed by their lack of siblings] do not care about Uncaring family support. anything. They are not Suffering Has anxiety and fear of suffering like me because alone[pain and being alone without family they have their spouses and misery]1 around they [their spouses] are Receive no Has anticipatory grief of giving them money. I don’t financial support being alone and suffering have any one who is giving from family alone - me money, except for the Have no money # 08: I can see that all the government. My old age Have to depend troubles and suffering are pension was stopped; they on social upon my shoulders only. said it is because I am now systems They [his siblings] do not in the hospital. Do you see Old-agepension care about anything. They such things? Can you see stopped are not suffering like me now? 1 because they have their spouses and they [their spouses] are giving them money. I don’t have any one who is giving me money, except for the government. P09 Paulina You have said that staying here [in hospital] for a long time has hurt you so much. Tell me more about that. P10 Moagi Eish man, two years! Two Two years in Feels he is wondering and years! [He was stressing the hospital questioning his current words and with frowned Stayed a long situation or what is fore head]. Pause. Such a time in hospital happening to him → he is long time in hospital? You trying to make sense of his know, when you are arrested Know situation, thus asks and sentenced, you always sentence/prison fundamental existential know how long your term 1 questions, that is, 1. how sentence is, and when you long will the situation will be released from jail. Told nothing in remain like this or when it is But here, in hospital, ah, hospital about going to be over they tell you nothing, they discharge date 2. What is going to happen say nothing at all, at all, you Health personnel to me; where will I end, [# see. It is like they say, says nothing 10: you don’t even know Moagi, lets us go, for about date of where you are going] →thus instance they find you discharge lacking perspective into his sitting and chilling out with Do not know future. However, he also friends – you don’t even where he is lacks perspective into the know where you are going. going (heading present situation because he to)1 said that unlike the inmates, he does not know when his situation and suffering will be over, rather he remains in a state on protracted

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Line Speaker Interview Process Coding Themes unknowing [ therefore yielding endless uncertainty and TIME (waiting time) →# 10two years! Two years! When you are arrested and sentenced, you always know how long yoursentence is, and when you will be released from jail. But here, in hospital, ah, they tell you nothing, they say nothing at all, at all, you see. It is like they say, Moagi, lets us go, for instancethey find you sitting and chilling out with friends – you don’t even know where you are going. Theme could be: lack of perspective/ endless uncertainty and time

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Appendix 5: Interview Schedule

Interview Schedule

Participant’/ interviewee’ Name: Researcher’s notes/reflections:

Interview Question (Opener):

“Tell me about what it is like for you to be hospitalized for such a long time in this DR-TB hospital.”

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