The quest for a test: The influence of ARVs on motivation to seek VCT, care and support at AIC

1
The quest for a test The influence of ARVs on
motivation to seek VCT, care and support at AIC

• Betty Nakazzi-Kyaddondo
• Child Health and Development Centre, Makerere
  University and
• Hanne Mogensen
• Institute of Anthropology, University of
  Copenhagen
• Models for Life What we can learn about ARV
  distribution from field experience in low income
  countries", Workshop organized by AIDSNET -
  Copenhagen, September 2004

2
Order of presentation

• Introduction
• Methodology
• Findings
• Discussion
• Suggestions
• Conclusion

3
Introduction

• It is two decades of AIDS
• Lots of scientific discoveries and advances in
  understanding and controlling HIV
• Limited impact on the majority of HIV infected
  people with increasing hope, however that this
  may be about to change
• ARVs currently altering AIDS epidemic and the
  lives of those who live with the virus. But how
  is this happening? What has actually been the
  impact of these drugs on peoples lives and what
  is likely to be happening in the future?

4
Introduction Cont.

• Presents findings from a study conducted early in
  2004 at four branches of AIDS Information Centre
  (AIC)
• Draws upon material from long-term ethnographic
  fieldwork in rural and urban Ugandan communities
  where ARVs are now becoming part of everyday life
• The goal was to investigate possible ways in
  which ARVs are presently changing peoples
  motivation to seek VCT, awareness of ARVs and the
  impact availability may have on prevention
  activities and peoples attitudes towards these.

5
Methodology

• 1. AIC records and database showing attendance
  patterns in five centres from 2000 to 2003.
• 2. Semi-structured questionnaire administered to
  clients seeking VCT (before and after pre-test
  counselling) and treatment at AIC
• 3.  Open-ended key-informant interviews made with
  health workers and Counsellors from four AIC
  centres
• 4.  Focus group discussions conducted with
  clients who sought VCT during the study and with
  old AIC Post-test club members.

6
Methodology Cont.

• 5.  Case studies were collected from Post test
  Club members who already knew their HIV status,
  focusing on their awareness with ARVs and with
  their experience with trying or not trying to get
  access to the drugs
• 6. In-depth interviews and participant
  observation were carried out in rural as well as
  urban communities within the catchment areas of
  two AIC centres in order to obtain insight into
  the awareness of ARVs among non-AIC clients (who
  are however, often neighbours and relatives of
  clients of AIC or TASO).

7
Data Analysis

• Quantitative data was analysed using SPSS
  computer program to establish possible
  relationships between and among various variables
  
• Qualitative data was transcribed and analysed
  using the open-end computer program and emerging
  themes have been presented by relating different
  categories of information to study objectives
• Case studies are incorporated in the study
  because they give a real in-depth

8
Study findings
9
Respondents background characteristics

• Among the 328 respondents
• 55 were males and commonest age bracket (31.7
  ) was 20 -24 years
• 68.4 were educated to at least secondary school
• 62 were employed and 42 were married or
  cohabiting.

10
VCT UTILISATION
11
Trends of VCT utilization by AIC region/branch
over four years
12
VCT, health workers perspective

• VCT increments challenging health workers
• Well as this may be good for the individuals and
  communities out there, the big turn-ups for VCT
  have not been met by changes in AIC
  infrastructure or human resources to
  satisfaction.
• Quality of care compromised
• Loss of health workers morale in counselling.
•  Increased burn out rate
• Lack of guidelines on counselling procedures for
  children.  

13
Reasons why respondents ever sought or they were
seeking VCT
14
Reasons for testing Cont.

• "Then at least I know" is a recurring way to talk
  about one's reason for testing.
• Gives some people a sense of agency and ability
  to plan for the time that remains and for one's
  children if one knows for sure.
• Awareness leads to acceptance and motivates
  taking an action, as opposed to what was often
  the case in the past, when awareness led to
  denial.
• Fear of the certainty and inability to act often
  caused by worries.
• Stigma, although reducing over the years.

15
Health seeking care for PLWA
16
Health seeking care for PLWA Cont.

• HBC was perceived to the most important service
  for PLWA because of the mix of professionals,
  including medical personnel, social workers and
  counselors and also because it was offered more
  privately without sick patients going long
  distances and waiting too long in the queue.
• The power of herbal drugs in the treatment of
  AIDS symptoms cannot be overemphasized because
  it was often always mentioned by all categories
  of interviewees and FGD participants.

17
ARVs and VCT

• ARVs played a limited role in people's decision
  to test. And as some respondents clearly
  expressed that ARVS are available but not for
  everyone and some were willing to test and wait
  for when free drugs would be available.

18
AIDS is not curable!
19
Herbs in AIDS treatment

• There were mixed opinions on herbal drugs in the
  treatment of HIV/AIDS. Whereas some people
  believed that herbs are a cure for HIV, some
  others believed that herbs may be effective in
  treating some of the symptoms associated with
  AIDS while others believe that herbs play no role
  whatsoever in the treatment of the disease.
• The power of herbs still need not be neglected

20
ARV awareness

• 53 of respondents had heard about ARVs
• Majority heard of ARVs more than a year ago
• Demonstrate correct knowledge about the
  effectiveness of ARVs, most of them (84 ) were
  aware that ARVs prolong life of HIV infected
  individuals.
• However some 5 thought that ARVs cure HIV/AIDS,
  worsen health status (3.5 ) and have no effect
  at all on the health of HIV infected individuals
  (2 )

21
ARV awareness Cont.

• Significant variations of level of knowledge by
  socio demographics, the likelihood of hearing
  about ARVs increased with age, higher levels of
  education, better employment and having ever
  tested before
• Knowledgeable about the sources of ARVs
• Most of them first knew about ARVs from relatives
  or friends, followed by radio, health workers etc

22
ARV awareness Cont.

• Respondents knew or had previously interacted
  with someone using ARVs, either a relative (46
  ), friend/ neighbour, (43 ), have watched or
  heard testimonies over radio or TV (11 ).
• More females than males known to be using ARVs
• Over 90 percent bought their drugs, with support
  from family, work place insurance schemes or
  churches
• Treatment and research programs
• Costs not known

23
ARV awareness Cont.

• The difference in pre and post counselling
  interviews was people's thoughts about
  availability.
• Prior to counselling hardly anybody expressed
  expectations that ARVs would be realistic for him
  or her.
• After counselling 93 of the respondents felt
  they would consider using ARVs. How they will get
  access to them remains questionable, but it still
  shows that a first step has been taken on a new
  path.
• Health workers selective on whom to share with
  information about ARVs

24
ARVs and behavior

• People are divided what the social and
  behavioural consequences of ARVs will be in the
  long run.
• About half of them say, "People will not become
  more immoral". The other half state that it will
  no doubt increase immorality, i.e. people will
  stop being careful.
• It is as yet far too early to say what will in
  reality happen, but it is worth noticing the
  openness that seems to come along with increased
  awareness

25
Discussion

• VCT attendance has increased in the past years
  and this seems to correlate with the time that
  ARVs became available in the areas of the AICs
  studied.
• It is noteworthy, however, that people still only
  to a very limited extent seek VCT because they
  wish to obtain ARVs.
• People know about availability of ARVs

26
Discussion

• People have a sense that some assistance is given
  to PLWHA, but ARVs are not yet perceived as being
  part of this assistance.
• Traditional medicine occupies a prominent
  position for some individuals to an extent that
  herbal medicines may affect the access and
  utilisation of ARVs.

27
Discussion

• Traditional HIV/AIDS care and support centres
  with home visits are still perceived the best for
  PLWA
• Health workers challenged by the growing need and
  increasing availability of ARVs
• People's expectations to ARVs are presently very
  modest and realistic.
• ARVs are still largely experienced as being out
  of reach

28
Suggestions

• VCT services need to be expanded and adequate
  human resources recruited to revive the
  compromised quality of counselling and
  effectively address the increasing demand for the
  services
• Mass campaigns to educate people about
  availability, advantages and side effects of ARVs
  is mandatory before government distributes free
  ARVs

29
Suggestions Cont

• 3. Paediatric AIDS care initiatives including
  counselling, care and support need to be urgently
  addressed even at AIC
• 4. Increased demand of VCT along with the
  increasing demand of ARVs will have a direct
  bearing on the need for a consolidated and linked
  approach to prevention and behaviour change. This
  therefore calls for strengthening the gap between
  prevention and treatment

30
Suggestions Cont

• 5. As Government scales up the plan for free ARVs
  expansion in the country, affordable drugs should
  be planned for as these are likely to be more
  sustainable
• 6. Government, Non government organisations and
  funding agencies should promote research in
  herbal medicine to increase accessibility to
  proven herbal treatments