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3rd Global Conference
Making Sense of: Health, Illness and Disease
Monday 5th July - Friday 9th July 2004
St Catherine's College, Oxford
Conference Programme, Abstract & Papers
Session 8: Metaphor, Grief
& Living with Disease
Chair: Aaron Goodfellow
Healing Through Metaphor and Private Rituals in Response to Miscarriage:
4 Families
Susan Speraw
Associate Professor of Nursing, University of Tennessee-Knoxville, USA
Reflecting the “non-event” status of miscarriage
in medical and social contexts, the literature contains minimal information
regarding psychosocial responses to such a loss. This qualitative study
explored 40 couples’ grief responses to pregnancy loss occurring
prior to sixteen weeks gestation. It was approved by the Institutional
Review Board, and subjects’ participation was voluntary, without
compensation.
Participants had experienced a miscarriage within three
years of the study, with a mean gestational age of 9.3 weeks. While there
was demographic diversity, the majority of the sample was Caucasian,
college-educated, and aged 31-39 years. Most losses were easily conceived
first pregnancies.
Conjoint interviews in participants’ homes included
open-ended questions about their relationship to the fetus and each other,
the miscarriage event, and things that had helped and hindered coping.
Median interview length was two hours. Content analysis of transcripts
by the researcher and an independent rater identified common themes.
The most significant findings related to the process of grief resolution.
Couples overwhelmingly considered their fetuses to be “real people,” and
already had assigned names or terms of endearment. The absence of formal
funeral rituals for fetuses was highly distressing and hindered coping.
Friends and family were unable to relate to couples’ losses because
there was no shared experience of a person whom all could mourn, and
no formal means of mourning that life. To cope, the overwhelming number
of couples created their own “secret” memorial
rituals through which they memorialized their children. Rites were kept
secret out of fear of societal or familial ridicule. Four couples exemplified
the responses of the whole: In one family each spouse created their own
private memorial but withheld their actions from each other, leading
to marital strain; the second family created an elaborate remembrance
celebration in which the nuclear family all took part; the third family
constructed a garden and assembled a memory box; in the fourth family
a tapestry that held metaphorical meaning was woven and displayed.
Findings
have special meaning for anyone involved in providing support to families
following miscarriage. The cases and implications will be discussed.
The Experience and Meaning of a Newly Chronic Disease in a Middle-Income
Country: An Ethnographic Study on Mexican Women Living with HIV/AIDS
Betania Allen
Centre for Population Health Research, National Institute of
Public Health, Mexico .
The experience and meaning of a newly chronic disease
in a middle-income country: An ethnographic study on Mexican women living
with HIV/AIDS.
In the mid-1990s, medicines came into use that can prevent
or slow progression from HIV infection to AIDS and death. This syndrome
(HIV/AIDS) has thus become a chronic disease, albeit only for HIV-positive
people with access to these medications, a development that has profound
implications for the meanings of HIV/AIDS. I aimed to explore the experience
and meanings of living with HIV/AIDS among HIV-positive Mexican women
with access to medicine and health care for the disease.
I did an ethnographic
study in a public hospital which provides HIV/AIDS care and a non-governmental
organization (NGO) run by people living with HIV/AIDS, in Mexico City
, Mexico , for 18 months during 2002-2003. I did participant observation
(taking field-notes) and individual and group interviews (tape-recorded)
with 30 women living with HIV/AIDS who receive treatment at the hospital,
some of whom participate in the NGO. I did analysis through repeated
review and coding of the ethnographic material.
There are two general
self-representations among study participants, either as someone who
is sick and has many problems (“people say, ‘poor
thing’, and they’re right”) or as a person who is “well” but
living with a disease (“I’m healthy, I just have HIV, but
I’m fine”), is strong and has “blessings” and
advantages (“I have so many good things, really, and I happen to
have HIV, but I’m really not bad off”). Also, while some
women say, “I am HIV” (possibly a contraction of “I
am HIV-positive”) others say “I have HIV”. Almost all
the women consider HIV a more manageable chronic disease than diabetes,
cancer or kidney failure. While some women create a feeling of health
and safety by intensive use of diagnostic testing and clinical exams
by their doctors, others use positive thinking and avoid or ignore information
about “negative things” such as possible side effects of
medicines, symptoms (self- or physician-identified) or test results.
St. Wyspianski (1869-1907): The Last Self-Portrait of the
Syphilitic Artist
Tomasz Spiewak
IPP "Performance and Media Studies", Institute of Theatre Studies,
University of Mainz, Germany
No abstract is presently available