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PHENOMENOLOGY OF TIME:

LIVED EXPERIENCE OF PEOPLE WITH HIV/ AIDS IN


CHINA

JOURNAL ANALYSIS

PRESENTED TO
Mam Carolyn R Magat

PRESENTED BY : GROUP – 1
Avula Krishna Reddy
Anilkumar Menon Athulya
Badana Naveen Kumar
INTRODUCTION
Phenomenology is the study of human experience and the way things present
themselves to us in and through experience. Phenomenology has been used in social and
health science disciplines to study the lived experiences of health and illness. Phenomenology
of time attempts to account for the way things appear to us temporal or how we experience
time. This journal synthesis is based on the qualitative study of lived experiences of people
living with HIV/AIDS in China. More clearly it explores the role of time, in particular time as
lived. The Human Immunodeficiency Viruses are two species of Lentivirus that causes HIV
infection and over time acquired immunodeficiency syndrome (AIDS). AIDS is a condition in
humans in which progressive failure of the immune system allows life- threatening
opportunistic infections and cancers to thrive. In most cases, HIV is sexually transmitted
infection and occurs by contact with or transfer of blood, pre-ejaculate, semen, and vaginal
fluids. Non- sexual transmission can occur from an infected mother to her infant during
pregnancy, during childbirth by exposure to her vaginal fluid, and through breast milk. Within
these bodily fluids, HIV is present as both free virus particles and virus within infected immune
cells. It damages the immune system. The immune system helps the body fight off infections.
Untreated HIV infects and kills CD4 cells, which are a type of immune cell called T cells. As HIV
kills more CD4 cells, the body is more likely to get various types of infections and cancers.
HIV is a lifelong condition and currently there is no cure, although many scientists are
working to find one. However, with medical care, including treatment called antiretroviral
therapy, it’s possible to manage HIV and live with the virus for many years. Without
treatment, a person with HIV is likely to develop a serious condition called AIDS, which is the
most advanced stage of HIV. At that point, the immune system is too weak to fight off other
diseases and infections. Untreated, life expectancy with AIDA is about three years. Causes of
HIV progress through 3 stages. Stage 1 is the acute stage, the first few weeks of transmission.
The stage 2 is clinical latency, or chronic stage and the stage 3 is AIDS. HIV and AIDS are related
but they are not the same thing.
Phenomenological experience is less about the apparent and observable experience
than about how the experience is constituted through one’s conscious acts such as memory,
perception, reflection and expectation. While experience is constituted through
consciousness, consciousness is constituted over time. Time consciousness can be separated
into three levels : first, things appearing in the world with their manners of temporal
appearance: second, the acts of consciousness that intend such temporary objects; and third,
the time- constituting flow of consciousness. The flow of time interweaves with the flow of
consciousness and thus, time as lived is integral to meanings of the experience. Time as
indispensable dimension of human experience has received inadequate attention from
scholars who study illness experience. Some studies reveals that people with chronic illness
can intentionally change their relationship with ‘time structure’(i.e. past, present, future) as
a way to reconstruct their relationship with the self that was compromised by the illness.
Through paying full attention to the present, individuals can gain control over their life and
their fear of the future and, thus, gain control over the illness and transform the loss of self
into transcendence of self. That is structuring time is used as a strategy to manage chronic
illness by individuals facing uncertainty to manage the self. It is a process of acceptance and
coping. It is found that HIV infected individuals were able to consciously select the best time
to disclose their seropositive status to others. They often did not do so immediately after their
diagnosis because they needed that time for themselves to come to terms with their diagnosis
before having to contend with the reactions of others. An exploration of the lived experiences
of HIV – infected individuals has discovered some intentional aspects of the process of living
with this disease that are not easily observed from a biomedical perspective.

OBJECTIVES OF THE STUDY


The main core purpose of this study is to understand Chinese HIV- infected individual’s
experiences of living with this disease from their own perspectives. Based on the studies of
the Joint United Nations Programme on HIV/AIDS in China , the estimated number of HIV-
infected individuals in the country was 700,000 at the end of 2007. In 2007 alone, there were
50,000 new infections in China, and their transmission routes were divided among
heterosexual transmission(44.7%), men who have sex with men (12.2%), injection drug
users(42%) and mother to child transmission (1%). Even though AIDS education campaigns in
recent years have improved the public knowledge on HIV/AIDS, the mark of disgrace
associated with this disease and discrimination towards people with HIV/AIDS are
widespread. And it have inhibited many from accessing the HIV test and engaging with health
care. The rapid growth of health care costs due to the commercialization of the health care
system has made some basic care services very much costly for the poor. In 2003, the Chinese
government issued the Four Frees and One Care policy: free ARV drugs, free prevention of
mother- to-child transmission, free voluntary counselling and testing, free schooling for
children orphaned by AIDS, and care to people living with HIV/AIDS.

METHODS
This study comes under Qualitative Research. At first the phenomenological approach,
informed by a number of authors was adopted, which aims to describe, understand and
investigate the meanings of lived experiences. Secondly the phenomenological approach
attempts to understand empirical matter or phenomenon from the perspectives of those who
experiencing them. Third it recognizes the importance of individual’s reflective descriptions
of experiences, through which the researcher is able to gain access to the meanings of their
experiences. The data for this study were collected through conducting individual face to face
semi- structured in-depth interviews with 21 adults living with HIV/AIDS in a metropolitan city
in northern China, in 2004. Written , informed consents were obtained from all participants
were obtained from all the participants before the interviews. With their permission,
interviews with 15 participants were audiotaped, and with the remaining participants
detailed notes were taken, in accordance with their preferences. The interview guide included
several general prompts to ensure that major themes of interest are explored.
The researcher suggested the participant to organize her/his storyline according to
his/her rationale so as to facilitate a participant- led discussion, though most participants still
preferred sharing their experiences by answering the researcher’s interview questions.
Specifically the researcher asked these participants questions about their experiences, their
self- perceptions and the strategies they used to facilitate living with HIV/AIDS. The length of
the interview ranged from two to three hours, including the time for informed consent, the
interview itself and collection of demographic information. The audiotaped interviews were
transcribed verbatim in Chinese. The researcher read through the texts of all transcripts and
interview notes as constituting the full descriptions of participant’s experience, and then
assigned tentative category labels (e.g. ‘beliefs about HIV/AIDS’, ‘post diagnosis social
interaction’ and ‘self-perception’) to the unique statements of participants. Statements with
similar category labels were later grouped into clusters, and also gave attention to diversity
of perspectives. Based on the research analysis, the researcher were able to develop a
comprehensive synthesis of the participant’s understanding of HIV/AIDS.

RESULT
The study presents findings related to HIV-infected individual’s understanding of time
in the processes of living with this disease. Their perceptual time consisted of three
interconnected and co-existent dimensions: the linear time, the relational time, the
reconstructed time. These three dimensions do not correlate with the clinical progress, but it
reflects the fluidity of one’s intentionality that may be shaped by various contextual factors,
such as health status, family relationships, social support and self-reflexivity, in the process of
living with this disease.
Linear time, the time that was interrupted by their HIV diagnosis. Although HIV/AIDS
is now accepted as a chronic disease, participants in this study viewed it as a lethal disease
because of their uncertainty about the social/ health resources available to them. The sense
of ‘impending death’ also discouraged participants from making commitments. Despite the
variations in their health status, all participants appeared certain about their ‘imminent
death’. Relational time is the time that prioritized the sociocultural significance of family
obligations in relation to an uncertain lifespan. These participants commonly wished to live
longer even though some of them perceived death as a path to relief from difficulties such as
financial hardship, social discrimination and physical pain. Relational time was like importance
was given to accomplish the obligations to family rather than prioritizing the death or life. The
Reconstructing time gave them a sense of self-fulfilment, acceptance and even happiness.
They understood that they cannot control the length of time, but they can control its depth.
Despite the consequences, death as the end of the linear time also provided a reference point
for participants to refer to in reflecting on their lives. In some sense getting this disease helped
them articulate their understanding of limited time and the meaning of life. Meanings of time
or reflection on time also intersected with their reflections on themselves as well as their
relationship with others. Many participants commented that they were better participants
since HIV diagnosis.
Participants ability to reconstruct the meanings of time varied depending on a
number of factors such as social support, socioeconomic status, family structure, health(both
physical and mental) and self-perception. Those who received more support from their
families, societies, health institutions and other HIV- infected individuals had less concern
about the flow of time than those who felt shunned, isolated and discriminated against. We
can conclude that without hope for the future, living with HIV/AIDS became simply a life
leading to a dead end, the end of time.

REFLECTION

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