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A forgotten generation - Long-term survivors' experiences of HIV and AIDS (Paperback)
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Discovery Miles 6 470
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A forgotten generation - Long-term survivors' experiences of HIV and AIDS (Paperback)
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How are we to appreciate and comprehend what it has been like to
live with HIV and AIDS-related illness over the past three decades
or more? When the AIDS pandemic began in the early 1980s,
scientific knowledge and medical treatment had a limiting effect on
quality of life and life expectancy for people living with HIV and
AIDS-related illness. During this era the very idea of AIDS
signified fear, panic, stigma, prejudice, acute chronic illness and
the real threat of imminent death both within and outside of a UK
context. As the global expansion of HIV scientific knowledge
continues to develop, we observe a dramatic change in how the
medical community defines HIV as a disease. The term AIDS has been
largely discarded in the West and we resist the 'death sentence'
scenario; instead we approach HIV as a chronic illness condition.
With effective HIV combination therapies now available to those who
can afford and access them, the successful management of HIV is
perceived as within our reach. This story-of-stories brings
together twenty eight long-term survivors all of whom were
diagnosed between 1981 and 1994 prior to the advancement of HIV
medicine; in some cases even before medical health checks for HIV,
such as the CD4 count and viral load test were available. It is a
passionate story-of-stories allowing the reader to become intimate
with each story-teller who shared their personal experiences of
living long-term with HIV and AIDS within a UK context: this is
their gift We unearth how our story-tellers negotiated and managed
everyday life living with this unpredictable illness condition
based on in-depth interviews conducted during 2002. These poignant
personal stories historically reflect upon long-term experiences of
women and men living alongside HIV and AIDS-related illness; they
show us how real people made sense of their lives and continued to
'live out' everyday life in the UK. It is a thorough and passionate
portrayal of personal experiences revealed by the spirited women
and men who took time out of their own lives to offer a valuable
contribution to further public understanding of this stigmatised
disease. By offering insights into different personal experiences
of those who have lived long-term with an HIV-positive diagnosis,
readers can appreciate and recognise the many ways of being
HIV-positive. Chapter one explores how concepts such as health,
illness and identity can be defined and how shared meanings differ
between people who use these concepts on a daily basis. It also
furnishes the reader with a brief history of HIV and AIDS to set
the backdrop for how we should understand the potential dilemmas of
living with a HIV-positive diagnosis during earlier more ignorant
times. Chapter two reveals how story-tellers learned of their
HIV-positive diagnosis. Chapter three examines the early years of
living with HIV and explains how our story-tellers managed
uncertainty. Chapter four discloses how sickness and health was
negotiated and experienced before HIV medicine became more
effective. In chapter five our story-tellers speak of how intimate
and sexual relationships are experienced in the context of HIV.
Chapters six and seven critically expose how long-term survivors
experienced and negotiated complex and highly toxic combination
therapies for the treatment of HIV in conjunction with
relationships with the medical profession in earlier times. Chapter
eight uncovers how networks of social support were negotiated and
experienced over time. Following this, we reveal in chapter nine
the positive and negative elements of living long-term with HIV or
AIDS diagnoses. The final chapter delves into my own experiences as
the researcher for the initial HIV study. The book offers an
extensive glossary of medical terms at the back to assist readers
in medical terms and words associated with HIV and AIDS.
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