An exploration of the experience of living with and making meaning of HIV: a phenomenological study

D.Litt. et Phil.HIV/AIDS is an epidemic of grand proportions sweeping through South Africa and the world at large. The statistics reveal that HIV/AIDS particularly in South Africa is fast becoming a major health crisis and psychological emergency. It is one of the most challenging, perplexing and alarming realities of recent times. Because of its terminal nature and the distant possibility of cure, infection with the disease to date provides death as the only available option. This in turn has enormous ramifications on multiple levels inter alia personal, societal, economic and political levels. These ramifications are potentially devastating. Furthermore, because of its common sexual mode of transmission, it is a disease that confronts individuals and society at large with some of the most vicious forms of prejudice and injustice, often leaving those living with the disease shamed and alone. This is confounded by the fact that it is a disease that follows no precedent for coping both on a personal and societal level, leaving society and the individuals living with HIV/AIDS helpless and hopeless. It therefore is a disease and experience that necessitates urgent exploration and investigation. The literature review attempts to present the frame of reference from which to understand and contextualise the experience of living with HIV specifically focusing on the biological (Ungvarski & Flaskerud, 1999; Webb, 1997), psychosocial (Antonovky, 1979; Carson & Green, 1992; Cohen & Willis; 1985; Hedge, 1991; Nicholas & Webster, 1993; Ragsdale & Morrow, 1990; Zich & Temoshok; 1987) personal (Kubler-Ross, 1969; Tegius, 1992), cultural (Fee & Fox, 1988; Ungvarski & Flaskerud, 1999; Van Dyk, 2001), gendered (Glover-Walton, 2001; Lawson, 1999; Wilton, 1997) and political (Grundlingh, 2001; Webb, 1997) experience of HIV/AIDS. It explores the impact of diagnosis on identity and psychosocial development (Tegius & Ahmed, 1992) and attempts to explore ways of coping with the experience (Cohen & Willis, 1985; Folkman & Lazarus, 1980; Lazarus & DeLongis, 1983). Further it examines the social constructions that shape and guide the personal experience of the disease (Dansky, 1994; Sontag, 1991). It explores the intersection and influence of culture, gender and politics on the experience of living with HIV/AIDS (Brandt, 1988b). The literature review further explores the experience of meaning making from a religious (Baumeister, 1991; Yalom, 1980), existential (Frankl, 1965; Frankl , 1967; Frankl , 1969; Frankl, 1978; Frankl, 1984; Fromm, 1949; May, 1967; Yalom, 1980) and cultural perspective (Hammond-Tooke, 1989; Kiernan, 1981; Louw, 1994). It examines the philosophy of existentialism, as well as elucidates various developmental frameworks of meaning (Erikson, 1963; Fowler, 1981; Kohlberg, 1984; Mezirow, 1991; Reker, 1991). Western and African worldviews in relation to meaning making are examined exploring the intersection of culture with personal meaning systems (Marsella & White, 1982). Meaning in suffering, specifically focusing on meaning in illness, is examined (Janoff-Bulman, 1992; Toombs, 1992). The literature review reveals that most of the research on people living with HIV/AIDS is focused on medical factors describing transmission and biology. Only a small number of theoretical studies and empirical research have begun to explore how people living with HIV/AIDS cope. Research on the exploration of the idiosyncratic meanings and experiences of people living with HIV/AIDS is very limited. Research on the lived experience and meaning making of HIV particularly within the South African context has to an extent been ignored and neglected. Furthermore, much past research has focused on the experience of HIV/AIDS in poverty-stricken communities and ignored the experience of HIV/AIDS for middle class individuals. The present investigation of the lived experience of HIV within a phenomenological framework, seeks to address these gaps. It seeks to provide an understanding of the lived experience of HIV as well as explore the meaning making process for middle class individuals living with HIV. The phenomenological system of inquiry is employed as a mode of research in an effort to study the experience of middle class people between the ages of 30 and 39 years, who are living with and potentially making meaning of their experience of being HIV positive. Because an in-depth understanding of such an experience is most suitably accessed through a qualitative approach, a phenomenological research method was chosen, in an attempt to gain access to the idiosyncratic, lived experience of the participants. Four people living with HIV were accessed through the media and through ‘word of mouth’ referrals. Individual interviews were held that lasted between one hour to an hour and a half. Interviews were recorded and transcribed verbatim, providing the information from which intra-individual analyses and discussions were carried out on each participant. The analyses rendered an understanding of the participants’ idiosyncratic experience of living with and making meaning of HIV. An inter-individual analysis and integration was then undertaken. Common themes arising from the inter-individual analysis of the participants’ responses related to feelings of being overwhelmed and bewildered by contradictions and perplexity of life with HIV. The participants described finding balance and voice to their experience through the world of work. Thus, in exploring the experience of HIV with others they noted that their sense of self, both physically and psychically, had been profoundly transformed. In turn this impacted their experience of others, which formed an integral part of living with HIV. From a biological perspective the participants noted that through the use of medication, vitamins, exercise and correct diet they had found a means of gaining control over their situation. Nonetheless they felt unable to hold onto the hope of a possible cure. When describing the experience of becoming HIV positive the participants relayed a process of overwhelming and intense feelings. They noted that they had felt ambivalent feelings towards their infectors but in time were able to forgive them. In disclosing their HIV positive status to those close to them the participants described feelings of shame and fear of rejection. They noted that while they did experience rejection from some, they also experienced deep care and support from others close to them. Invariably they noted that becoming HIV positive impacted their ways of being in relationships as it also impacted their way of knowing and being generally in the world. They described feeling fearful of the future and saddened by the experiences of loss and limitation on many levels. Furthermore, they became sensitised to a sense of limited time and in turn became more aware of their inevitable death. Thus in tackling their fears of death the participants noted that they had begun preparing for death and in some way gaining a sense of control. In making sense of their experience and death the participants noted that they had experienced a need to celebrate life and focus on the here and now. They further noticed that in celebrating life they had rediscovered spirituality and religion. They noted a greater sense of depth and compassion in their lives, and felt that they may find a sense of purpose and meaning through helping others. Finally, in elucidating their experience of living with HIV they noted that in many ways the influences of culture, economics and gender had mediated their individual experience of being HIV positive. It is important to note that these central themes of the phenomenon of meaning making and HIV are generated and influenced by broader contexts. The individual with HIV is a being-in-the-world with physical, psychological and social domains, all of which influence and shape his/her experience, the meanings he/she derives from it and the decisions he/she makes in regards thereof. The value of this research lies primarily in its ability to gain an in-depth understanding and insight into the lived experience of people with HIV, particularly within the South African context. The responses of the participants provided insight into and emphasis on the inextricable link between the personal and the political, as it displayed how economics determine access to resources and inevitably determine the experience of living with HIV. For the participants economics was the determining factor in terms of the possibility of using anti-retroviral medication, which invariably determined their prognosis. This has huge implications for public and political policy. Furthermore, the research suggested that living with HIV was very different to life with other terminal diseases, as it is bound up with very potent, social and private constructions of shame, stigma and prejudice. This has implications for public and social education around HIV/AIDS. The participants suggested that becoming HIV positive forced them to relook and re-examine their own stereotypes, transforming their experiences of self and others. The strength of the study lies in the use of a phenomenological framework, as it provided access to a rich, broad and deep description of the subjective experience. However while the qualitative research paradigm yielded fundamental insight into the subjective experiences of the meaning making and HIV, it was unable to quantify these experiences or establish the strength of correlation and causality between variables. These limitations may be circumscribed through the use of both quantitative and qualitative methods in future research. Furthermore, follow up studies should be done to explore continual patterns or newly emergent trends providing a fuller picture of the experience