The experience of HIV reactive patients in rural Malawi--Part I.

Abstract

Malawi has a population of 9 million people with AIDS the leading cause of death in the 20-40 age group. The HIV positive prevalence rate, estimated at 23% in urban areas and 8% in rural areas, is one of the highest in the world (AIDSEC, 1994:1). Evaluation of counselling practices showed poor results with counsellors feeling ineffective and inadequate. Patients are mostly tested on medical indication but patients who do not see the benefit of knowing their HIV status increasingly refuse testing. The counselling practise as it is known in the Western world is a foreign concept for patients living in rural Malawi. The high stigma of AIDS complicates support of the patients. The goal of the research study was to describe a model of counselling that would meet the needs of an AIDS patient in rural community in Malawi. A qualitative research design that was explorative, descriptive and contextually specific to rural Malawi was used for the study. In order to describe a counselling model it was important to understand the illness experience of HIV reactive patients. The patients are seen in group context congruent with the African culture and therefore the experience of the primary care giver of AIDS patients is explored as the other major factor in the phenomenon examined. One phase of the research is described in this article namely exploring and describing the experience of the HIV reactive patient in rural Malawi. Results show that patients are in an advanced stage of AIDS when they are diagnosed and complain of weakness and an inability to do work, including an inability to do their daily chores. This causes a feeling of desperateness that is worsened by the perception that support systems are inadequate. Support systems are mostly identified as parents, partners and siblings to assist mainly with the physical care and financial support. Despite the fact that the family is very important to patients there is a reluctance to acknowledge their HIV status. Patients fear being rejected once it is known that they have AIDS--not only because AIDS is a sexually transmitted disease, but also because it is perceived that financial and other support will be withheld if it is known that patients have AIDS and will therefore die and not be able to return the support provided. Patients feel they have no future once a diagnosis of AIDS has been made which results in refusal of testing, as they do not see the benefit of knowing their HIV status. Assessing the coping ability of the patient within the household as part of an overall assessment is one proposed strategy that could be taken. Secondly the patient is encouraged to take a more active role in the counselling process, which could be achieved by narration. The family should be incorporated into the counselling process as early as possible.