Bridging the Gap: Conference Record [Abstract book, International Conference on AIDS (12th: 1998: Geneva, Switzerland)]

490 Abstracts 24255-24260

12th World AIDS Conference

Project: In light of the fact that the clinical picture and progression of ADC is not
perceived by the individual as the 'true' account of his experiences, the following
approach was taken. A qualitative investigation of ten structured interviews was
conducted. Ten men diagnosed with ADC stages 1 or 2 (mild and moderate) were
interviewed for one hour. The interview consisted of ten open ended questions
and explored how participants defined and experienced their diagnosis of ADC.
Results: People living with ADC have articulated specific meanings to
their dementia, that is both subjective and reflective of their own inner coping mechanisms and emotional well being. Several paradoxical themes were
identified: hope/despair, insight/lack of insight, acceptance/denial, powerlessness/empowerment, low self esteem/self worth. These constructs of meanings
have highlighted a change and a divergence from other AIDS related illnesses.
Lessons Learned: It is vital that healthcare professionals who provide support
and management to people with ADC routinely address these themes to elucidate
the subjective constructs of what it means to live with the label of ADC. This does
not only assist in the comprehension of how the person re-defines themselves
but gives voice to their experiences and facilitates a more holistic approach to
management.
24255 Coping with HIV/AIDS: Results from a qualitative study
Linda Abetz1 2, C. McGrath2, D. Grant3, P. Anderson3. 1Adelphi Mill Bollington,
Macclesfield Cheshire Skio 5JB; 2MAPI Values, Macclesfield; 3Glaxo Wellcome,
Stockley Park, England
Issues: People living with HIV/AIDS not only cope with manifestations of the
disease, such as chronic fatigue and debilitating and/or fatal illnesses, but also
with complex treatment regimens and societal stigma. The majority of research to
date has focused on the negative aspects of the illness and has largely ignored
the protective factors that help people cope with the illness and sustain them
through difficult periods.
Project: This qualitative study examines information collected from 150 respondents in three countries (US, UK, France) on the most useful strategies
people with HIV/AIDS use to help them cope with the disease and its effects.
Results: Within our sample, every person believed that a positive attitude
helped to keep them healthy. Sustaining a positive attitude was at times quite
difficult and was aided by: social support from friends, family and support groups,
spiritual beliefs, taking control of one's treatment regimen, making drastic lifestyle
changes (such as diet, exercise, eliminating addictive habits and stress), and
using alternative therapies (such as tai chi, massage, Chinese herbs). Many
respondents were convinced that these coping methods have extended their
lives. Those with more passive coping styles still believed in the power of positive
thinking but tended to be bolstered by new treatment developments. Many also
suggested that it was only when they were able to sustain a positive attitude for a
period of time that they felt 'ready' to begin treatment. All of these methods suggest that taking control of one's own well-being helps those living with HIV/AIDS
feel more positive.
Conclusions: This research suggests avenues for health care intervention, including reinforcing positive coping techniques, judging timing of treatment/management in relation to how the person is feeling, and creating treatment
guidelines for asymptomatic people. An individualised approach and appropriate
tools are needed as future research examines the effects of positive attitude and
locus of control on treatment response and longevity in people with HIV/AIDS.
262*/24256 Sex after diagnosis: What support services can be
provided
Nimit Tienudom. Access 61/54 Taweemit SOI 8 Ramag Road, Huay Kwang,
Bangkok 10310, Thailand
Issue: PLWH/A needs more information and support to solve psychological problems related to their sexuality and to better manage their sexual life after being
diagnosed.
Project: ACCESS is a Thai NGO providing long term counselling and support
services for PLWH/A and their families. In general, counselling and support services being provided focus on how to deal with PLWH/A's psychological problems
and how to manage their life after learning their HIV status. Among all problems
being raised by PLWH/A, one is the difficulties in dealing with their partner in
various way of practicing safe sex. However, the only issue relating to sex that
counsellors normally discuss with PLWH/A is that they have to take prevention
not only to avoid transmitting the virus to others but also to avoid getting more
disease in their body. Other aspects i.e. attitudes and feeling towards sex after
diagnosed, sufficient knowledge and skills to practice safe sex, obstacles faces
with sexual partners, etc. were not yet brought up to seek solution together.
Results: In conducting group discussions and interviews with PLWH/A on their
sexual life after diagnosis, it was found that the topic became of interest and
PLWH/A would like to talk and share their experiences. Some reflected that
sexual issues itself were difficult enough to discuss, but being HIV positive is
even harder for them as it was the mode that led them to infection. Most found
that there was very little channel for them to discuss their sexual problems. Some

shared that although they still have sexual desire but they felt guilty to continue
having sex. Some lost interest in sex which created another problem with their
partner. Most prefer to have sex with partner who is also positive because they
do not have to worry about revealing their status.
Lessons Learned: 1) Sexuality issue is needed to be discussed among
PLWH/A like most HIV/AIDS intervention does with other groups. 2) Being infected through sex does not mean that positive persons have knowledge on

sexuality and skills in practicing safe sex. 3) Counselling and support activities for
PLWH/A should include sexual related services to help PLWH/A deal with their
sexual life after being diagnosed.
1260*/24257 Support for patients with HIV/AIDS by training their
families in integral home care (Mexico)
Sergio Hugo Palma Guzman1, Y. Pineda Tinoco2, R.M. Duarte Sotelo3,
G. Gomez Tinoco2. 1Rayon No. 578 Centro Historico, CP 58000, Morelia, Micho
Acan.; 2MUSS, AC, Morelia, MI; 3MUSA, AC, Morelia, MI, Mexico
Situation: In the State of Michoacan, Mexico, the population diagnosed as infected with HIV or SIDA is 1360 and continues to increase. The high cost of
treatment for HIV/AIDS, the social stigma and social rejetion patients suffer, and
the despotic and prejudicial attitudes displayed by health institutions are factors
which weaken the health and accelerate the decease process and mortality of
individuals with these infections.
Project: "Michoacanos for Health and Against AIDS" ("Michoacanos Unidos
por la Salud y Contra el Sida" - M.U.S.S., a N.G.O.) has undertaken a 6-month
project to increase the quality and length of life of patients with scant resources,
principally in rural areas, by improving their home care. The first task, to identify
patients, was a joint effort of personnel of other non-governmental agnecies and
used media publicity. Subsequently, through home visits, we have provided social
and psychological-support both to the patients and to their families or house
mates. We provide training in nitrition, hygiene and general care and provide both
orthodox and alternative medical care. Finally, we motivate both patients and their
families to continue-informang themselves and to defend their rights.
Results: We have assisted 152 members of 72 families, achieving good interation in - 61 families, improving and lengthening the lives of 75 persons living
with HIV/AIDS.
Training families in home care has taught us that with appropriate attention to
families, patients can live better lives, are accepted with dignity and can also die
in dignity surrounded by their loved ones. Furthermore, this training significantly.
reduces costs of treatment both for these families and for society.
24259 Living revisited: The experience of men living with AIDS
after successful combination therapy
Andrea Traenkmann1, H. Ezer2. 13610 McTavish Street #36 Montreal Quebec
H3A 1Y2; 2McGill University, Montreal, Canada
For many people with AIDS, the arrival of combination drug therapies came as
a reprieve from a virtually certain death. This study describes how men with
AIDS who believed they were dying, re-engaged in a process of living following a
course of successful combination therapy. Seven men who recovered from a lifethreatening episode in the AIDS trajectory participated in this phenomenological
study. All men had repeated hospitalizations and described a sharp deterioration
in their physical well being prior to these therapies. Data were collected through
a series of unstructured, audio-taped interviews. The transcribed interviews were
examined for recurrent themes, categories were defined using constant comparison and relationships between categories were identified. Two major themes
emerged from the men's descriptions of their experiences. The first theme, "continuing uncertainty", was associated with feelings of confusion, the sense that
they no longer had the right to discuss issues related to living with AIDS, and the
need to remain ready to die while still trying to live life. Despite uncertainty, hope
was maintained as participants began rebuilding their lives. The second theme,
"rebuilding life", emerged as men recognized that previous adjustments no longer
fit. They were engaged in an active re-evaluation of their sense of self. They let go
of their previous preoccupation with physical well-being, questioned the nature of
their close relationships, explored their roles in these relationships, and protected
themselves and those around them from disappointment in the event of relapse.
While they engaged in some of their previous activities, a greater challenge lay in
developing new and different life plans related to such things as work, finances,
and leisure activities.
This study suggests that men who once believed themselves to be dying were
now grateful to be alive but were experiencing considerable emotional confusion
while rebuilding their lives. For them, these processes have been ongoing, lasting
from 18 months to two years. Clinicians need to actively engage men who have
lived through similar experiences in a discussion of their feelings and their decisions. They need to be aware that those who have come close to death, often
perceive living to be more difficult than it once was.
640*/242601 The impacts of combination therapies on the lives
of people with HIV
Peter Weaterburn, W. Anderson, F.C.I. Hickson, P.G. Keogh. Sigama Research,
University of Portsmouth Unit 64, 49 Effra Road, London. SW2 1BZ, UK
Background: Little is known about the social and emotional impact of successfully
taking anti-HIV therapies. Research has yet to explore the relationship between

health gains and their impact on daily life.
Methods: Semi-structured, depth-interviews were undertaken with 40 individuals (24 gay or bisexual men, and 11 heterosexual women and 5 heterosexual
men from various African communities) who had been on therapies for at least 4
months. The interviews lasted 1 to 2 hours and focussed on reasons for starting
therapy, its difficulties and benefits and consequent changes in everyday life,
including relationships, family, community, sex, work and use of HIV services.