The experiences of persons with AIDS within the St. Francis Care Centre

M.A.The rapid spread of HIV in South Africa has necessitated the creation of hospice-like care centres for those who have already developed full blown AIDS in the most severely affected areas. These centres face unique difficulties and problems that need to be addressed in a sensitive and understanding manner. Little is known or has been recorded about the interactions within and problems facing these centres. The St. Francis Care Centre is one such a hospice where mostly AIDS patients come to find relief from pain and sometimes, eternal rest. It is situated on the East Rand and serves members of all communities, white and black, rich and poor, male and female, old and young. The centre can take up to forty patients — twenty adults and twenty babies. Twenty-four permanent paid staff members and a number of volunteers run the centre. Together they cater for all the physical and emotional needs of the patients. As this is an emerging phenomenon and a subject rarely touched by sociological investigation, I decided to conduct an inductive study with the care centre experience as the primary focus, in order to gain a clear understanding of the care giving process in such a centre. To study this care centre and its occupants, it would be most appropriate to employ qualitative techniques. The two most important techniques used were qualitative interviewing and participant observation. The duration of the study was nine months. During February 1998, I started to work at the care centre in order to establish a relationship with the personnel and the patients. From March to July I conducted all the qualitative interviews while working at the centre as a volunteer counsellor. This gave me the opportunity to interact closely with the patients and the centre staff. The remaining three months were dedicated to the interpretation and analysis of the data I collected. From the information gathered regarding the experiences and social relationships of the patients and the personnel during the six months that I worked closely with the centre, I have come to the following conclusions: The social relationships in the care centre: Most patients have very close bonds with their mothers, who generally assume the most active role in the care-giving process. The sisters of these patients would generally be the person who gives the most assistance to the patient and the mother of the patient. )=. The fathers of some patient assisted with the emotional support of the patient, but would play a small role in the physical care of the patient. )%. Brothers played insignificant roles in all cases at the centre. Patients often have quarrels with the nursing staff. â Patients tend to forge friendships with other patients and volunteers rather than with the nursing staff. Important problems that face the care centre are as follows: Even though patients were very happy with the care they received at the centre, some of them were bothered by the restrictive measures taken by the centre to ensure their safety. The most important problem facing the patients is boredom. Steps need to be taken to occupy the patients during the day. Problems were experienced regarding the interactions between patients and personnel. Due to revisions in the training programme for nurses in South Africa, most nurses are ill equipped to deal with the emotional requirements of palliative care, and this factor causes some stress between patients and nursing staff. This may be rectified through the appointment of a qualified social worker that can train both nurses and patients to sustain better relationships. A problem affecting the volunteer group is the tendency of certain patients to manipulate volunteers. This lead to cases of 'burnout' among the volunteer group. Once again, the appointment of a qualified social worker may offer a workable solution, by training volunteers to recognise the signs of manipulation. The parents of some patients also expressed the feeling that they are being excluded from the care giving process. The recommendations made in this report were done to benefit the centre, which could in turn use the results of this study to develop a strategy of care that may benefit the patients and the community it serves