Illness narratives: time, hope and HIV

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Abstract

Life threatening illness, such as HIV/AIDS, also threaten people's sense of identity and taken-for-granted assumptions about the temporal framing of their lives. In response, people often experience transformations in values, spirituality and life priorities. Drawing on a combined quantitative and qualitative study of people living with HIV/AIDS in Australia, three different narratives that people use to make sense of their illness experience are identified: linear restitution narratives, linear chaotic narratives and polyphonic narratives. Linear illness narratives colonise the future, assuming that the future can be controlled through human action. They emphasise a faith in medical science, tend to be secular and self-centred and assume the end of life to be in the distant future. Hope is focused on concrete outcomes such as improved health or material possessions. Linear narratives can be either restitutive or chaotic. Restitutive linear narratives anticipate a life that will mirror the narrative. Chaotic linear narratives anticipate a life that will fail to meet the linear ideal resulting in despair and depression. In contrast, polyphonic illness narratives are oriented toward the present, emphasising the unpredictability of the future. These narratives tend to include spiritual experiences, a communally oriented value system, and to recount increased self-understanding and the gaining of new insights as a consequence of their illness. Hope in polyphonic narratives is more abstract and focused on a celebration of mystery, surprise and creativity.

Introduction

Narrative theory has been increasingly utilised to study of the subjective experience of illness (Kleinman, 1988, Mattingly, 1994, Hassin, 1994, Frank, 1995). This reflects a more general move to the narrative understanding of human action in psychology (Sarbin, 1986), history (White, 1973), philosophy (Taylor, 1989) and sociology (Maines, 1993). As Polkinghorne (1988, p. 11) points out, the core argument of narrative theory is that narratives are “the primary scheme by means of which human existence is rendered meaningful”. Narrative theory has numerous advantages, not the least of which is that it provides a sophisticated response to some of the philosophical and methodological problems raised by postmodernists (Ezzy, 1998). Narrative theory provides an innovative and useful way of approaching the subjective aspects of human experience in general and the illness experience in particular: “We make as well as tell stories of our lives and this is of fundamental importance in the clinical world” (Mattingly, 1994, p. 811).

Interwoven with narrative theory is a focus on the temporal nature of human self-understanding and more specifically, of the illness experience (Ainlay, 1988, Charmaz, 1991). The teleological nature of human understanding and action is captured in the analysis of the temporal aspects of illness narratives. As Mattingly (1994, p. 819) has noted, the stories that people tell enable them to act with a view to shaping their own future: “we are situated with an eye to the future and that future saturates each present moment with meaning”.

Further, some studies have begun to explore the moral, political and public health implications of specific narrative forms. Hassin (1994), for example, examines the public health implications of the narratives of female intravenous (IV) drug users, arguing that ‘dope fiend’ narratives deny these women agency and dignity, making it more difficult for them to take responsibility for their actions and participate in public health prevention campaigns. Similarly, Good et al. (1994, p. 860) identify a therapeutic narrative composed “for the moment” that is associated with the “commodification of ‘hope’ and expectations of material salvation through biomedical technologies”. These analyses can be extended through an examination of the association of narratively constructed temporal orientations with particular moral, spiritual and political orientations. This article emphasises the complex interweaving of assumptions about the future, types of narrative form, illness experience and prognosis, spiritual beliefs (or their absence), value orientations and specific behavioural responses to illness.

To address these issues a review of several existing theories of illness experience is combined with results from quantitative and qualitative studies of people living with HIV/AIDS (PLWHA) in Australia. The article is divided into seven sections. After this introduction, the second section reviews existing studies of time, narrative and hope during illness. Third, the methodology of the research is described. Fourth, the results of the quantitative survey are summarised. Fifth, the results of the qualitative interviews are presented. Sixth, the results and their implications for public health policy are discussed. The final section presents a brief review and summary of the central argument.

Section snippets

Illness narratives: existing theory

This section demonstrates the theoretical usefulness of combining narrative accounts of illness with an explicit analysis of temporal orientations, ethics, ontology and spirituality drawing on the work of Davies, 1997, Frank, 1995, Nussbaum, 1986, Barnard et al., 1995. Each of these studies draw on different empirical material and have different theoretical emphases. The review below uses insights from each study to develop a more sophisticated understanding of illness narratives.

According to

Method

The results reported below draw on a dual methodology of a large national survey and a smaller qualitative study. Both studies were conducted in 1997 and are of PLWHA in Australia.

The survey results are from the ‘HIV Futures Survey,’ that is a national representative survey of Australian PLWHA (N=914) conducted during the second half of 1997. Full details of the survey methodology are reported elsewhere (Ezzy et al., 1998a, Ezzy et al., 1998b). With regard to the specific questions for which

Survey results

An HIV diagnosis results in an increased likelihood of religious belief. Forty percent of respondents identified themselves as either atheist or agnostic and 60% identified as religious. The proportions of believers are lower than in the general Australian population (Ezzy et al., 1998c). However, the Futures survey is representative of PLWHA in Australia where more than 85% of PLWHA are gay men who are much less likely to be religious. Prestage et al. (1995, p. 19), for example, found only 37%

Narratives of living with HIV/AIDS

The qualitative sample consisted of eight women (seven heterosexuals and one lesbian) and 38 men (33 homosexuals, two bisexuals and one heterosexual). The average age of the men was 40, ranging from 27 to 62 years old. On average they had been diagnosed with HIV for eight and a half years, ranging from 1 to 14 years since diagnosis. The average age of the women was 37, ranging from 25 to 50 years old. They had been diagnosed on average for three and a half years, ranging from one to seven years

Linear restitution narratives

Linear restitution narratives were characterised by an attempt to narrate and live a ‘normal’ life in spite of an HIV/AIDS diagnosis. Depending on the individual's anticipated prognosis, respondents variously planned to achieve goals including completion of a course of study, buying a home and taking care of a dependant child. All of these activities represented a continuation of values and goals that the respondent had held prior to their HIV diagnosis. Some people refused to believe that

Linear chaos narratives

Linear chaos narratives were characterised by expressions of depression, anger, isolation and social dislocation. Depression was often intermingled with attempts to avoid or deny these emotions. One respondent described weeks of intense partying in which “I attempted to trash myself”. Other respondents described intense anger. Many were taking anti-depressant medication.

The empty present and a bleak future were typically contrasted with a past that had promised much until HIV had destroyed that

Polyphonic narratives

The term ‘polyphonic’ literally means ‘many voiced’. Polyphonic narratives are characterised by overlaid, interwoven and often contradictory stories and values. They are ‘many voiced’ in the sense that they explicitly contain a variety of different and often contradictory goals, values, temporal assumptions and attitudes. While all narratives contain contradictory elements, polyphonic narrators embrace many of the contradictions and tensions in their accounts rather than suppressing them.

Discussion

The results of the quantitative survey demonstrate that religious belief is associated with short-term planning amongst Australian PLWHA. The two most common forms of religious belief are Christian and New Age or New Age like beliefs, with the latter being much more common than would be expected. New Age beliefs are characterised by an emphasises on understanding developed through experience and typically reject attempts to formulate doctrinal systems (York, 1995). These belief systems embrace

Conclusion

In summary, this paper makes six main points about illness narratives. First, integral to many existing narrative studies of health and illness is an assumption that privileges linear narrative structures with a simple plot oriented toward success in the future. In contrast, I highlight the polyphonic nature of some illness narratives, with multiple and sometimes contradictory plotlines and stories overlaid one upon another.

Second, the moral, ethical and spiritual, implications of a narrative

Acknowledgements

The data analysed here were collected as part of the ‘HIV Futures Study’ conducted by the National Centre in HIV Social Research at La Trobe University and was supported by an Australian Commonwealth AIDS Research Grant, and a La Trobe University Central Starter Grant. The study was endorsed by the Australian Federation of AIDS Organisations (AFAO) and by the National Association of People Living with HIV/AIDS (NAPWA). I would like to acknowledge the work of Michael Bartos, Richard de Visser,

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