This document discusses a study that used computer-aided qualitative data analysis software (CAQDAS) to analyze interviews with families in Malaysia affected by HIV/AIDS. The study aimed to understand the needs of these families and children's vulnerability to HIV/AIDS. Key findings included issues with revealing HIV status due to fear of rejection and discrimination, a lack of HIV/AIDS knowledge among patients, and the important role of NGO outreach programs in providing financial, emotional and social support. The use of CAQDAS facilitated efficient analysis of themes and inter-rater reliability checks across the large dataset.

1. The stories behind children living in HIV
and AIDS affected families:
Using CAQDAS to detect the needs and
issues faced by families affected by HIV
and AIDS
Dr. Ng Lee Luan
COMPUTER-AIDED QUALITATIVE RESEARCH 2011
University of Macau
24 & 25 February 2011
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3. 3

4. What is HIV (human
immunodeficiency virus)?
HIV simply means that
you have tested positive
for the virus.
It does not become AIDS
usually for ten years or
until immune system
problems appear.
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5. What is AIDS (Acquired Immune
Deficiency Syndrome)?
is a way of describing a whole
group of symptoms and
diseases associated with the
damage HIV does to the
immune system.
As an HIV infection
progresses, there is ongoing
damage to immune defense
cells and the body becomes
increasingly less able to fight
off infection.

6. It is important to
know that a
person can live
with HIV for
many years
without
developing AIDS
symptoms.
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7. 7

9. Vulnerability of Malaysian Children and Families
to HIV and AIDS
Between 1986(when the first case of HIV was reported in
Malaysia) and the end of 2008, cumulative HIV cases reported
stood at 84,630 of which 14,576 were AIDS cases.
During this time, 12,589 people had died of AIDS. In Malaysia,
about 32% of the total population is aged between of 0-14 years
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10. Vulnerability of Malaysian Children and
Families to HIV and AIDS
In addition, in the period of 1986-2005 about
38% of the people living with the disease are
found to have been between the ages of 0-29
years (The Malaysian Ministry of Health,
2006).
These trends may to a greater future effect
of the epidemic on children, including the
children’s homes, family environment, living
conditions and the children’s quality of life.

11. Background of project
UNICEF Malaysia wanted more details
related to how the livelihood of families
with children are affected by HIV/AIDS.
These details could not be gleaned from
the research report conducted by a
team of researchers who collected data
using a questionnaire.

12. Objectives
Findings from the project seek
to:
Gain current and up-to-date
information and fill the gaps
in available data on children
infected with and affected by
HIV and AIDS.
support evidence-based policy
formulation and programming
for the medium and long-
term future of Malaysian
children affected by AIDS
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13. Participants
Snowball sampling approach
The target group of the research
project included:
Families with children, at least
one parent living with HIV or one
of the parents has died due to
AIDS.
The caregivers of children
(whose lives have been directly
or indirectly affected by
HIV/AIDS)

14. Method
7 sellected members, who
belong to the Pink Triangle
group (associated to the
Malaysian AIDS council) were
recruited as interviewers.
These interviewers underwent
training sessions related to
interview and questioning
techniques.

15. Data
25 digitally recorded interview sessions
Length of interview ranges from
45minutes – 90 minutes
Languages:
18 – Malay
4 – Chinese (Cantonese, Mandarin)
3 – Indian (Tamil)

16. Analysis
Nvivo 8.0
Initial coding framework were
established using the focus area pre-
identified in an earlier research project
of a quantitative nature.
Coding framework were then refined
based on findings subsequently
uncovered in interview data.

17. Some Findings
Issues linked to revelation
Lack of AIDS related knowledge among
patients
The importance of outreach programs
by NGOs

18. Issues linked to revelation
Disguise as other more
common sickness
“My daughter does not know of
my sickness. If she asked, I’ll just
say I am suffering from migraine.
That’s all.”
“When my son was not feeling
well, I would only let the school
know that he suffered from weak
stomach. Couldn’t tell them the
truth.”

19. Issues linked to revelation
Rejection by family
members
“ They (family members)
have indeed abandoned
us after they know about
my sickness. My own
siblings totally refused to
have any contact with
us.

20. Issues linked to revelation
Fear of discrimination
Not possible. Children cannot
keep secrets. I am worried that
he may tell the friends or
teachers in school and they will
discriminate him. (A HIV
positive father)
My child’s classmate’s father
was sentenced to jail, he was
boycotted by other students.
What more if these classmates
knew that my son is HIV
positive.

21. Issues linked to revelation
Fear of discrimination
I once told a close
friend of mine. As
soon as she knew,
she decided to end
our friendship and
kept her distance
from me. (a A HIV
positive mother)

22. Lack of AIDS related knowledge
among patients/caregivers
“We have to be careful, have
to take care of our health.
Like now, when there is
H1N1 risk, cannot go to
public places because we are
the ones who have high-risk
diseases.” (a mother who is
HIV positive)
This sickness is like leprosy.
It spreads and has to be
isolated. (A HIV positive
parent)

23. Lack of AIDS related knowledge
among patients/caregivers
I have no idea,
according to others,
prostitudes are the
ones who get AIDS. I
don’t do those thing…I
can’t understand how
this sickness spread. (A
wife whose husband
died of AIDS)

24. The importance of NGOs and
outreach programs by NGOs
Financial aid
“I don’t know. I only
meet a person from
the group whose name
is John. He has
arranged for me to
receive RM200 per
month to pay for my
child’s medication.”

25. The importance of NGOs and
outreach programs by NGOs
Support for family
members
“At least they bother to
find out about you, visit
you and enable you to
have new friends. At least
my wife can meet up with
others and see for herself
that others who are sick,
can also be successful in
something.”

26. The importance of
NGOs and outreach
programs by NGOs
Emotional Support
“Because I am always stressed out about my sickness,
I will contact Mr. Roslan from this group. I’ll tell him
my feeling and he will try to motivate and give me
hope to continue my life.”
“I get all my spirit to continue living from the PT
foundation and those friends that I got to know from
the foundation.”
“Part of that is the Tamil support group. The support
group actually helps a lot. First thing is to overcome
the fear in you. When I see other HIV people can live
for another 10, 15 or even 20 years, it has given me
strength to go on.”

27. Implication of including
CAQDAS in research
In the context of
the present study,
the various linking
and tracking
functions speed
up the analysis
process

28. Implication of including
CAQDAS in research
The “see-also” function found in Nvivo enabled the researchers to effectively
and efficiently detect theme(s) derived from codes which subsume under
different branches of codes in the coding framework.

29. Implication of including
CAQDAS in research
The coding comparison function enables researchers to
check inter-rater reliability

30. ngleeluan@um.edu.my
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31. Presented at the Asia-Pacific conference on
Computer-Aided Qualitative Research
24 & 25 Feb 2011, Macau SAR
For more information about our upcoming conferences
Please visit: http://www.merlien.org
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