Abstract
M.A. (Clinical Social Work)
The focus of this study is to understand patients’ experience of the long-term hospitalization from drug resistant tuberculosis (DR-TB). Tuberculosis (TB) has been prevalent in many societies over a long period with significant effects, and the World Health Organisation (WHO) has declared TB a global emergency. The eventual emergence of DR-TB globally has added to the TB burden.
DR-TB is highly infectious and difficult to treat, with less chance of cure, more complications of the disease and more side effects of treatment. It is also more expensive to treat. The treatment and management of DR-TB requires a protracted course of medication (18-24 months), requiring long-term hospitalization, which is often involuntary. Hospitalization involves complete withdrawal of patients from their regular social environment.
When DR-TB patients are hospitalized, it means that they can no longer perform their normal roles. Prolonged hospitalization brings sudden changes and interrupts the patients’ lives and compounds all kinds of losses. The isolation of DR-TB patients in the hospital, away from the social environment, to receive medical treatment and management of the disease, can have a complex biopsychosocial impact on the patient. DR-TB is complex and requires a multidisciplinary approach, not just medical treatment. The key to DR-TB control and management requires biopsychosocial intervention to ensure holistic care and treatment of those infected. Social work care and support is imperative and plays a very significant role.
My premise is that DR-TB patients, who are hospitalized for a long time experience and confront overwhelming existential problems which they are unable to understand and address – questions of mortality, purpose and meaning, hope, belonging and identity. Yalom (1980) states that the givens of existence are important and will happen to each person during life. Unless they are discovered, one’s existence will be frustrated, leading to pain and great confusion as well as an inauthentic existence. The existential issues are very painful, with devastating and complex effects on their lives, and require adequate and relevant social work care and support. The existential framework is vital, as different people attach different meanings to their daily life experiences of being hospitalized for DR-TB. This will enable the social worker to explore, understand and raise patient awareness of his/her existence and help the patient deal effectively with these issues.
This study seeks to answer the question: What is the experience of long term hospitalization like for DR-TB patients? This study adopted a qualitative, exploratory-descriptive approach to understand in-depth the patients’ experience of being hospitalized for a long time due to DR-TB.A 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.