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TitleCare support and quality of life outcomes among persons living with HIV in the HAART era
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Care support and quality of life outcomes among persons living with HIV
in the HAART era: Findings from southwest Nigeria
Adebola A Adedimeji 1 Oluwole Odutolu 2 1Department of Population and International Health, Harvard School of Public Health, Boston, MA USA
2 Harvard AIDS Prevention Initiative in
Nigeria (APIN), Abuja, Nigeria
Corresponding author:
Adebola A. Adedimeji
Harvard School of Public Health
665 Huntington Avenue, Building I, 12th Floor Boston, MA 02115
Tel: 617-432-1700
Email: [email protected]



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2 Abstract
HIV/AIDS is a major public health problem in many developing countries where it has contributed to
undermining the health infrastructure and lowered life expectancy among those infected. Although no cure
exists for AIDS, significant advances in therapies have
transformed AIDS into a manageable chronic condition
and improve well being of those infected in developed countries. However, in developing countries, such
transformations are yet to occur due
to socio-economic, structural and
environmental factors. This paper
addresses the issue of how care and social support contri
bute to improving quality of life of People living with
HIV/AIDS (PHA) in view of serious difficulties confr
onting them and the inadequate access to therapies.
Fifty persons living with HIV/AIDS, 8 health personnel and 32 persons who provide care for PHA were
involved in the study. Qualitative data were obtained th
rough participatory methodologies such as interviews
and discussion sessions in Ibadan and Ilesa, both in Southwest Nigeria. Analysis of data used the grounded
theory (GT) approach. Themes that
emerged, including personal/health
concerns, family/children™s needs,
financial pressures, stigma, access to drugs/health servi
ces, and availability of care and social support, were
considered by PHA as crucial determinants of their h
ealth and well-being. The activities of the support groups,
however, appear to cushion the negative effects of th
ese. The authors recommend that HIV/AIDS programmes
should address issues that affect the quality of life of
PHA given the socio-economic and structural constraints
to care, particularly in resource-poor settings while governments need to provide a policy environment that

strengthen support groups promoting the interests of PHA.
Key Words
: Health-related Quality of life; Care support;
People living with HIV/AIDS; Southwest Nigeria
.


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7 Some expressed a deep sense of sorrow and hopelessness regarding the future particularly in view of the
constant interaction with the medical system. This interaction reminds them of their positive status. One
of those in this category said:
‚–Outwardly you look good; many people don™t know you are positive. When you are in the

midst of people and you ought to be happy, constant medication and visits to the hospital
makes you feel sad and abnormal. You worry about people knowing your status when they
see you here
[hospital]
because they know this is a hospital for HIV people™.
Despite these negative experiences, others accept the situation with optimism, especially with continuous
counselling from health workers. Even among those who have developed full blown AIDS, they
expressed optimism about their health as a result of the continuous counselling to which they were
exposed. Some participants reported that the counselli
ng they received made them cope better with the
challenges that daily confront them in their efforts to remain healthy and active. One of the participants

reported that:
Family commitments and children™s needs
Family commitments and children™s need was also identified as an important issue with potential for

quality of life of PHA. Participants who have children and family commitments were concerned about
what will happen when they die. Thoughts like this le
ads to mental stress that worsens their condition. As
a single mother reported:
‚My greatest concern is for my two children. It is difficult to meet the needs of the children
how much less yourself. Their situation has worsened since my illness started and their
father abandoned us. ‚We were told to eat well, but I don™t even have the money to buy the
necessities. I often deny myself food so that
my children can eat and this worsens my
condition. I cannot work as hard as before to be able to meet their needs, but I have no

choice if I don™t want them to suffer, I need to be strong for them
[children]
™. Others were worried about how their HIV status will affect their children once people in the community
know that they are HIV positive. Others were concerne
d about children taking on adult responsibilities
when they are not ready for it because of their co
ndition. Despite these conc
erns, children™s welfare
strengthened the resolve to stay healthy as long as possible. Among participants who had no children,
concerns about family welfare were similar, particul
arly where the infected person was the breadwinner
or a major financier of the family before the onset of illness. One participant reported:
‚I am the first child of my aged parents and I have several younger ones who depend on me.
I hate to see that I can no longer cater for them due to this illness. My parent™s condition
has changed and I can only blame myself for allowing this to happen™.
Financial concerns
Finance was a problem for all the participants. It was an issue that recurred throughout interviews and
discussion sessions. Even though accurate estimates could not be obtained, those who have a source of
income reported the equivalent of less than $1 a day. Financial difficulties affected several aspects of life
of PHA, including access to food and drugs. It is especially acute due to the cost of ARVs (between
N1500 [$11.5] to N3000 [$23] per month)™ in addition to the cost of travel. For example, a PHA who has
commenced ARV treatment spends between N2500 [$19] and N5,000 [$38] every month to buy the drugs
in Lagos or Ibadan. Those living in rural areas spend more on transport and accommodation than those
living in cities.
The situation is critical for those without a regular income and even more severe among those with
irregular incomes. Those who are self employed repo
rted the considerable impact inadequate financial
resources has on their ability to cope, particularly in terms of meeting the basic necessities that will keep
them stable. The deteriorating health also affected th
eir ability to generate/earn an income because they
were no longer able to work or devote time to manage their business. Those in paid employment were

concerned about losing their
present source of income. As one middle-aged man said:



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8 ‚Nobody in my office knows my problem, but
I keep taking time off every month to see the
doctor or travel for ARV. In fa
ct, it has become too frequent
that I am worried I may loose
my job and I cannot afford that now, otherwise it will hasten the deterioration of my health™.
Inadequate financial resource is severe among respondents with irregular incomes, with unstable
employment, with low level of education, who are women, and lack support from immediate family
members mostly because they have been abandoned. The severity of the problem compelled the support
groups to render financial assistance to those in dire need. The opportunity to secure financial assistance
is, perhaps, the most important reason for the larg
e membership of support groups. One participants
reported that::
‚Without this association
[support group]
where would many of us be now? I am sure half of
the people here would have died since they cannot afford meeting their basic needs how
much less the cost of travelling to buy drugs? The financial assistance coming from this

organisation has gone a long way in helping many of us stay alive™.
Caring for PHA during bouts of opportunistic infec
tions involves considerable financial resources.
Family members who participated in discussion groups agreed that many have had to sell personal

property in order to care for the PHA. Similarly, the
lack of financial resources to meet basic needs of
PHA was reported as the most challenging issue confronting the support groups. This fact was alluded to
by the response of one of the officers of the support group who corroborated what
the PHA said when he
noted:
‚Meeting financial needs is the most challenging aspect of our work. Most members do not
have a source of income, but we have to ensure they have access to the only lifeline
[ARV]
by proving it free to those least able to afford it while those who can are listed on the
revolving loan scheme. We are desperately in need of help regarding this–™
Experiences of Stigma
Experiences of actual or perceived stigma compromise the quality of life lived by most PHA and these
contribute to the unwillingness to disclose info
rmation about their status. In most cases, PHA only
disclose information about their status only to suppor
t group members or trusted relatives in anticipation
of and/or return for care and sup
port. For this reason, PHA often undertake treatment and counselling
activities related to their HIV status with utmost secr
ecy for fear of what would
happen if people around
them find out about their status. To hide their status, many PHA are forced to seek services or join

support groups far from their local communities. Thus, it is common to find PHA from Ilesha go to
Ibadan or those in Ibadan go to Lagos to procure drugs and other services. In the same connection, we
found that only two-thirds of PHA who have been diagnosed for up to 2 years disclosed information
about their status to a family member, some doing
so immediately and others waiting for between 6
months to several years. These stigmatising experiences were linked to persons in the community and

institutions involved in service delivery, including hospitals and health personnel. Some participants
reported that:
‚Even nurses and doctors who are supposed to know better treat us as if we are
untouchables–they are always wearing gloves and washing their hands even when they
have to give you drugs; always stealing a l
ook at you, not straight in the eye™. The
consciousness that you are a potential source of infection is always there and it resonates in

the way people deal with you. Sometimes the
way you are treated speaks volumes about the
nature of your problem™.
‚I was admitted in a maternity ward to have
my baby. At first, the nurses and everybody was
nice and treated me well. After the birth of my baby, they suddenly began to treat me
differently and I got a lot of attention more than other women. Whenever anyone attends to

me, they do strange things I don™t understand. It was much later that my husband and the
doctor told me I am HIV positive. I can never forget that experience–it was very
embarrassing™.



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15 Table 1- Participants™ demographic a
nd background characteristics Percent
(N)
Sex Male
Female
Age 18-20
21-25
26-30
31-35
36-40
41-45
46+
Length of diagnosis
<1 year
1-2 years
> 2 years
Currently using antiretroviral
Yes
No
Current employment status
Government employee
Other employee
Self employed
Unemployed
Other
Marital status
Married
Separated/Widowed
Never married
Any children Yes
No
Current living arrangement
Urban
Rural
Currently living with Parents
Spouse
Children
Siblings
Biological relatives
Non-biological relatives
Alone
30 (
15) 70 (
45) 2 (1) 12 (
6) 10 (
5) 26 (
13) 20 (
10) 20 (
10) 10 (
5) 20 (
10) 35 (
17) 45 (
23) 36 (
18) 64 (
32) 8 (4) 6 (3) 48 (
24) 32 (
16) 6 (3) 46 (
23) 34 (
17) 20 (
10) 80 (
40) 20 (
10) 40 (
20) 60 (
30) 40 (
20) 16 (
8) 6 (3) 14 (
7) 12 (
6) 2 (1) 10 (
5)

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