The Social Construction of Identity in HIV/AIDS Home-based Care Volunteers in Rural KwaZulu-Natal; South Africa

Home-based care volunteer (HBCV) identity and how it is shaped was the main focus of the study. Fifteen HBCVs were interviewed about their work and personal life stories and then interviewed reflectively using a narrative interviewing style. Specific attention was paid to contextual meta-narratives and social field narratives in understanding the women's stories. Findings indicate that social field narratives of the women's stories were dominated by negative aspects of gender; poverty and socio-political factors. These were seen to coincide with the 'feminisation of responsibility' in this context effectively coercing the women into agency which manifested as their home-based care work. Meta-narratives influencing the women's lives were dominated by stories of communal motherhood; aspirations to service-oriented work and religious beliefs and commitment. The question of how it is possible for women who are seemingly constrained by oppressive narratives to voluntarily engage in community participation was answered in the women's personal life stories about being compassionate; hopeful; helpful and ambitious and having initiative. These characteristics collectively pointed to personal agency. Exploring connections between the different aspects of identity and context revealed that the women made sense of their community participation through their personal identities as strong and loving mothers. Connections between volunteer personal identity; agency and volunteer group identity were explored to make sense of the link between HBCV identity and volunteerism. The mother identity; encompassing personal agency (strength or power) and love (the meta-narrative of communal motherly love); was salient in influencing community participation of the group

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

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.

A care counselling model for HIV reactive patients in rural Malawi--Part II.

The purpose of the research conducted was to explore and describe HIV patients experience of their illness within the context of rural Malawi and, based on the results of the study, to describe a model for counselling HIV reactive patients in rural Malawi which would meet both the internal and external needs of the patient. Nursing for the Whole Person Theory, as well as symbolic interactionism and the research model of Botes, were used as paradigm, as the researcher believes a person is fundamentally a historical social being who can only be understood in a specific cultural context of space and time. The research was also conducted within a counselling context and different disciplines were integrated in the study. The research method followed two phases each addressing a different objective. Firstly, exploration and description of the HIV reactive individual's experience of illness, compilation of a demographic profile of the patients in the study and a description of their identified needs as well as possible resources, exploration and description of the primary care givers' experience of HIV reactive patients and the exploration and description of the viewpoint of counsellors in terms of counselling HIV reactive patients. In the first phase of the study in-depth phenomenological interviews were conducted with identified groups. Focus interviews were conducted with a hundred AIDS patients to identify the needs and resources of the patients and to compile a demographic profile. Focus groups discussions were conducted with counsellors for more complete comprehension. Data-analysis and literature control was undertaken. In the second phase of the study theory generation was used in order to develop a counselling model for AIDS patients and guidelines for implementing the model were generated. Based on the results of the analysis the major concept enable was identified as the essence of a model for counselling AIDS patients in rural Malawi. The visual model developed described a process of enablement with the counsellor as negotiator and the patient as a narrator in which the patient, family and community are encouraged to participate actively. By utilising the deductive reasoning strategy, relationship statements were inferred from the model. Guidelines were described for all three phases of the model, namely pretest counselling, post-test counselling and community care, in terms of objectives, strategies and activities. The value of this research was embodied in addressing a very real and urgent need in Malawi and proposing a solution with practical guidelines.