5.2 THE CONCEPTUALIZATION OF CORE TERMS: CARING AND TERMINAL
5.2.1 CONCEPTUALIZING CARING
5.2.1.3 Caring as Transforming
It was evident from this study that the nurses perceived caring as a process of restoring hope and full recovery to the terminally ill AIDS patients. In a context where HIV/AIDS is still viewed largely as a terminal illness, a disease that has no cure, adherence to anti-retroviral treatment was promoted by the participants, thereby encouraging and supporting their patients to recognize that AIDS is a chronic illness that persists for an extended time during which they can still lead a relatively normal life, rather than perceiving AIDS as a terminal illness with poor prognosis.
Theories on transformational leadership, namely supportive leadership and personal recognition, recommend supportive strategies which advocate for individualized consideration by encouraging behaviors that facilitate subordinates’ needs and
91 preferences such as showing concern for their welfare, thus creating friendly, supportive and therapeutic environments (Rafferty and Griffin, 2004). The participants in this study used supportive measures to re-establish a sense of hope and dignity to the patients who were in despair and refusing to take treatment, after having been diagnosed with HIV/AIDS. On admission to palliative care wards, the nurses remained patient with them, listened to their grief and advised them on the long-term benefits of antiretroviral drugs that reduce HIV related illnesses and death.
In this way, the nurses were agents of change who facilitated a change in their patients’ attitudes from a mind-set of gloom and fear of death due to AIDS, to a more positive frame of mind where they could have a future by adherence to the treatment.
By paving a way to proper care, treatment and support of the terminally ill patients living with AIDS, the nurses gained victory over the negative stigma associated with AIDS through counseling, supportive care and promoting an enabling environment for disclosure, (Greeff, Uys, Holzemer, Makoae, Dlamini, Kohi, Chirwa, Naidoo, and Phetlhu 2008). Thus, the nurses in this study were instrumental in transforming the negative attitudes of fear, stigma and isolation that are attached to AIDS diagnosis and treatment interventions to positive attitudes of acceptance of a life-long condition through lifestyle changes, prevention of opportunistic infections and adherence to antiretroviral therapy beyond the palliative care setting.
It has been acknowledged that lack of supportive efforts in fighting the AIDS epidemic defeats the efforts to care for people suffering from AIDS. The South African Government, particularly in the mid-90s, obstructed this support due to bureaucratic restructuring of the new democratic government and denialism that argued that HIV did not cause AIDS, but that it was caused by socio-economic problems such as poverty and life-style choices. Thus, the doubt in the established
92 science of HIV/AIDS etiology and treatment led to disappointment and failure of initiatives and strategies addressing the epidemic (Bloor, 2012).
In the early period of the new millennium, however, the government launched the HIV testing and counseling campaign, thus changing the situation. Through appropriate state response, efforts were made to reduce the stigma around HIV testing through public speeches and open talk about HIV/AIDS, and increased access to antiretroviral drugs (Bloor, 2012). While the patients were being treated in palliative care wards, the nurses provided information on the benefits and the long- term complications of antiretroviral therapy, and also equipped them with the knowledge of how to deal with the problems of a chronic and life-threatening illness such as AIDS.
By transforming the attitudes of terminally ill patients through encouragement, supportive care and empathetic listening to their grief and suffering, the nurses made great strides in improving the quality of life of their patients and witnessed the reward of seeing patients’ transition from terminal to chronic stages of the disease. Nurses were enriched by the gratitude of their recovering and discharged patients who had learnt to comply with the necessary adherence to antiretroviral drugs.
The South African National AIDS Council (2011) has expressed that positive progress has been made by the SA government in its target of reaching 80%
coverage with antiretroviral drugs, and that 1,4 million people have been initiated on ARTS since their role-out in 2003. This has transformed the lives of patients ravaged by the debilitating effects of AIDS and revived their hope by prolonging their health through early HIV testing and treatment, from terminal to chronic stages of the disease. Nurses have shared in the sense of achievement and Bernard et al, (2001),
93 observed that the satisfaction of the nurses lies in the recovery of their patients from their illnesses. This was affirmed by the participants of the current study who saw their role in caring for patients who were terminally ill as a process of renewing hope by encouraging acceptance of their HIV status so that adherence to antiretroviral therapy was ensured for successful recovery. The nurses experienced a sense of personal reward, which they expressed as “feelings of joy” and “feeling good” as the patients’ psycho-social dimensions were transformed as they gained confidence and control over the management of their chronic disease.