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“Life is so easy on ART, once you accept it”: Acceptance, denial and
linkage to HIV care in Shiselweni, Swaziland
Shona Horter
a
,
b
,
*
, Zanele Thabede
c
, Velibanti Dlamini
c
, Sarah Bernays
b
,
Beverley Stringer
a
, Sikhathele Mazibuko
d
, Lenhle Dube
d
, Barbara Rusch
e
,
Kiran Jobanputra
a
a
M
edecins Sans Fronti
eres (MSF), London, UK
b
London School of Hygiene and Tropical Medicine, London, UK
c
MSF, Nhlangano, Swaziland
d
Swaziland National AIDS Programme, Ministry of Health of Swaziland, Mbabane, Swaziland
e
MSF, Geneva, Switzerland
article info
Article history:
Received 22 March 2016
Received in revised form
15 December 2016
Accepted 4 January 2017
Available online 6 January 2017
Keywords:
HIV
ART
Qualitative
Linkage
Denial
Acceptance
Diagnosis
abstract
Background: Timely uptake of antiretroviral therapy, adherence and retention in care for people living
with HIV (PLHIV) can improve health outcomes and reduce transmission. M
edecins Sans Fronti
eres and
the Swaziland Ministry of Health provide community-based HIV testing services (HTS) in Shiselweni,
Swaziland, with high HTS coverage but sub-optimal linkage to HIV care. This qualitative study examined
factors influencing linkage to HIV care for PLHIV diagnosed by community-based HTS.
Methods: Participants were sampled purposively, exploring linkage experiences among both genders
and different age groups. Interviews were conducted with 28 PLHIV (linked and not linked) and 11 health
practitioners. Data were thematically analysed to identify emergent patterns and categories using NVivo
10. Principles of grounded theory were applied, including constant comparison of findings, raising codes
to a conceptual level, and inductively generating theory from participant accounts.
Results: The process of HIV status acceptance or denial influenced the accounts of patients' health
seeking and linkage to care. This process was non-linear and varied temporally, with some experiencing
non-acceptance for an extended period of time. Non-acceptance was linked to perceptions of HIV risk,
with those not identifying as at risk less likely to expect and therefore be prepared for a positive result.
Status disclosure was seen to support linkage, reportedly occurring after the acceptance of HIV status.
HIV status acceptance motivated health seeking and tended to be accompanied by a perceived need for,
and positive value placed on, HIV health care.
Conclusions: The manner in which PLHIV process a positive result can influence their engagement with
HIV treatment and care. Thus, there is a need for individually tailored approaches to HTS, including the
potential for counselling over multiple sessions if required, supporting status acceptance, and disclosure.
This is particularly relevant considering 90-90-90 targets and the need to better support PLHIV to engage
with HIV treatment and care following diagnosis.
©2017 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND
license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
1. Introduction
Timely uptake of antiretroviral therapy (ART) has a consider-
able effect on individual HIV-related health outcomes and on
reducing the likelihood of HIV transmission (Cohen et al., 2011;
Gardner et al., 2011; INSIGHT START Study Group, 2015; Jenness
et al., 2012; The TEMPRANO ANRS 12136 Study Group, 2015).
The UNAIDS 90-90-90 targets propose that with 90% of people
living with HIV (PLHIV) knowing their status, 90% ART initiation
*Corresponding author. M
edecins Sans Fronti
eres (UK), Lower Ground Floor,
Chancery Exchange, 10 Furnival Street, London EC4A 1AB, UK.
E-mail addresses: shona_horter@yahoo.co.uk (S. Horter), zanethab@gmail.com
(Z. Thabede), msfch-nhlangano-qualitativeresearch@geneva.msf.org (V. Dlamini),
sarah.bernays@lshtm.ac.uk (S. Bernays), beverley.stringer@london.msf.org
(B. Stringer), smazibuko11@gmail.com (S. Mazibuko), lenhlep@yahoo.com
(L. Dube), barbara.rusch@geneva.msf.org (B. Rusch), kiran.jobanputra@london.msf.
org (K. Jobanputra).
Contents lists available at ScienceDirect
Social Science & Medicine
journal homepage: www.elsevier.com/locate/socscimed
http://dx.doi.org/10.1016/j.socscimed.2017.01.006
0277-9536/©2017 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Social Science & Medicine 176 (2017) 52e59
for those diagnosed and 90% viral suppression for those on ART,
HIV could be eliminated by 2030 (UNAIDS, 2014). Several coun-
tries are now adopting ‘Test and Start’approaches in light of recent
WHO guidelines (World Health Organisation, 2015), whereby
providers offer ART for all individuals diagnosed HIV positive,
irrespective of CD4 count. High coverage and uptake of HIV
testing, linkage to HIV care, treatment initiation, retention in care,
and maintained adherence to ART are required for Test and Start to
reduce HIV incidence successfully (Gardner et al., 2011; Gardner
and Young, 2014; Hayes et al., 2015). However, shortfalls exist at
each of these stages (Gardner et al., 2011; Kilmarx and Mutasa-
Apollo, 2013; Nachega et al., 2014).
Community-based HIV testing services (HTS) can achieve high
uptake, particularly among first time testers, underrepresented
groups such as men, and those in early stages of disease (Bassett
et al., 2014; Mills and Ford, 2012; Negin et al., 2009; Parker
et al., 2015; Tumwebaze et al., 2012; Tumwesigye et al., 2010;
van Rooyen et al., 2013; Wachira et al., 2012). Yet, reported rates
of linkage to HIV care following diagnosis can be low. Recent
findings from the ANRS 12249 TasP trial in South Africa demon-
strated just 36.9% linkage to care within three months, among
those tested HIV positive by home-based HTS and not in HIV care
at the time of referral (Plazy et al., 2016), compared to linkage
rates found in Kenya, which were 42% following home-based HTS
(Medley et al., 2013).
Factors that can support or undermine linkage to HIV care have
been documented, including access barriers such as transport
costs and distance to health services (Mills and Ford, 2012), and
the perception that medical care is not required in the absence of
symptoms (Braunstein et al., 2011; Nachega et al., 2014; Rosen and
Fox, 2011). The reasons for patients' clinic non-attendance may be
complex and unintentional, including competing time demands
and anticipated harsh provider attitudes (Ware et al., 2013). Au-
thors argue that how people process an HIV-positive result, their
subsequent actions and their support needs remain insufficiently
understood (Gerdts et al., 2014; Mills and Ford, 2012; Wachira
et al., 2012). The need for more research on this topic is increas-
ingly pertinent in light of the move towards Test and Start, with
linkage to care presenting a critical gap that could undermine its
effectiveness in reducing HIV incidence (Iwuji et al., 2016).
Swaziland is one of the first countries in sub-Saharan Africa to
pilot Test and Start amongst the general population, with a
M
edecins Sans Fronti
eres (MSF) and Swaziland Ministry of Health
(MoH) implementation study in Shiselweni since 2014 and plans
for national adoption imminently.
Swaziland has the highest reported HIV prevalence worldwide
(31% of 18e49 year olds; Swaziland Ministry of Health (2012)). As
part of a MSF/MoH decentralised HIV and TB care project in the
Shiselweni region of southern Swaziland, community-based HTS is
one of the services provided. These HTS approaches were recently
evaluated and found to have achieved high levels of HIV testing
(e.g., 86% uptake reported by a home-based HTS campaign) but
with just 34% of those testing HIV positive then recorded as linked
to pre-ART care at an HIV care facility within six months of the test
date (Parker et al., 2015). Project data suggest that these rates of
linkage to care have improved to around 50% since 2015, following
the implementation of a range of linkage support strategies. These
strategies include individual case management with intensive
counsellor follow-up, point-of-care CD4 count, and a buddying
scheme, which connects newly diagnosed HIV-positive individuals
with a Rural Health Motivator in their community. Yet, it is not
exactly known why linkage to care rates improved (or which
strategies had the greatest effect), and the factors supporting or
hindering individuals' from linking to care following HIV diagnosis
are not well understood. It was therefore pertinent to examine
individuals' experiences with HIV testing and linkage to HIV care
to inform potential adaptation of support strategies to meet
identified needs satisfactorily.
2. Methods
In early 2015, qualitative research was conducted in Swaziland
to examine community member and health practitioner experi-
ences with MSF/MoH-provided community-based HTS in the Shi-
selweni region, in particular exploring factors influencing linkage to
care for those testing HIV positive. Data were collected through
semi-structured interviews and focus group discussions.
For the purposes of this study, linkage to care refers to atten-
dance at a specified referral facility and registration in the pre-ART
or ART register within six months of the HIV test date as this in-
formation is recorded and available through the project linkage to
care database. The study area was Shiselweni, southern Swaziland,
which includes three health zones: Nhlangano, Hlatikhulu and
Matsanjeni.
Full ethics approval was granted by the Swaziland Scientific and
Ethics Committee and the MSF Ethics Review Board before study
commencement.
2.1. Sampling strategy and participant recruitment
A stratified purposive sampling strategy was adopted to identify
and recruit those able to provide insight into community-based
HTS and linkage to HIV care (Marshall, 1996). The study sample
included three participant groups (Table 1): Patients who tested
HIV positive by community-based HTS interventions (group 1),
including those who had linked to care (group 1a) and those who
had not (group 1b); health practitioners with knowledge and
experience of community-based testing and/or linkage to HIV care
(group 2); and members of the communities where the HTS in-
terventions were delivered (group 3, HIV status unknown).
Group 1 participants were selected from a larger cohort of
patients in the project's community-based testing and linkage
database, including those who had tested HIV positive by
community-based HTS between June and November 2014 and
either linked to care (using the pre-ART or ART enrolment date) or
not (no pre-ART or ART registration recorded) within six months,
to explore their experiences with HIV diagnosis and subsequent
health seeking. The research team selected patients to include a
gender balance and a range of ages, those from each of the three
health zones, and a mix of urban and rural dwellings. A team
member contacted identified participants with information about
the study, requesting their participation. Interviews were arranged
with those who agreed at a time, date and location of their choice,
which was either in the patient's home, a private room within the
health clinic, or a private room within the project office.
Group 2 participants were recruited to include health practi-
tioners from the community-based HTS team, clinic-based HTS
staff, expert clients (HIV positive lay counsellors) and nurses
responsible for pre-ART and ART enrolment to explore their views
and experiences working with patients during HIV diagnosis and
linkage to care. Recruitment of this participant group aimed to
give insight into provider perspectives on their rapport with HIV
patients and to understand how their views on the social and
cultural factors influencing linkage to care may confer or differ
from patient accounts.
Finally, group 3 participants (community members from the
community-based HTS sites) were recruited for focus group dis-
cussions to explore their views on HIV testing and access to HIV
services, providing important contextual information through
insight into shared perspectives and commonly held views.
S. Horter et al. / Social Science & Medicine 176 (2017) 52e59 53
Community members were identified through community-based
expert clients who recruited six to eight members of their com-
munity with unknown HIV status and of the same gender and a
similar age.
2.2. Data generation and analysis
Data were generated through semi-structured interviews with
patients and health practitioners and focus group discussions with
community members in Shiselweni from March to May 2015. In-
terviews with female patients were conducted by a female research
assistant (RA). All interviews with male patients were conducted by
a male RA save one, which was conducted by the female RA, and all
were in siSwati language. The principal investigator (PI; SH) con-
ducted interviews with health practitioners, with most being in
English and two a combination of English and siSwati, with the
assistance of an interpreter. Interviews averaged 50 min. An RA
facilitated focus group discussions in siSwati, with an interpreter
and the PI co-facilitating and taking notes, averaging one hour and
40 min. Interviews and focus group discussions were conducted
according to topic guides following written informed consent. The
consent process included an informed consent form (discussed
verbally), with provisions for confidentiality, data storage and
requesting consent for audio recording. All interviews were tran-
scribed verbatim or transcribed and translated equivalently to
maintain meaning and integrity of data.
Data generation and analysis followed an iterative process, with
analysis beginning at the point of data generation and participants
being recruited until evidence of data saturation, when adding
further participants generated no new findings (Green and
Thorogood, 2009; O'Reilly and Parker, 2013). Data were analysed
thematically using coding to identify emergent patterns, categories,
and concepts from participant accounts. Principles of grounded
theory were drawn upon including constant comparison of codes
within and between cases to raise codes to a conceptual level and
generate theory inductively from participant accounts, and through
actively seeking discrepancies from majority themes (Bradley et al.,
2007; Glaser, 1999; Glaser and Strauss, 1967).
To ensure analytic rigour, interview transcripts were initially
analysed by three researchers independently to identify patterns
and descriptive codes from participant narratives. These patterns
were discussed, results were checked, and an initial coding
framework was developed. Full analysis was conducted by the PI
with NVivo 10 as an analytic aid, with the initial coding framework
being adapted as analysis progressed. Attention was paid to the role
of the researcher in shaping data analysis and interpretation,
emergent themes were tested by examining exceptions and
counter examples, and findings were triangulated by comparing
participant groups. Finally, a fourth researcher (BS) reviewed the
NVivo project data and coding to enhance validity and minimise
researcher bias.
3. Results
Thirty-nine interviews were conducted, with 28 patients who
tested HIV positive through community-based HTS initiatives and
11 health practitioners (online supplement Tables 2 and 3). Half of
the patients were female and ages ranged from 16 to 69 years.
Among the patients identified for recruitment from the project
patient database, 52% were contactable, and for those who were
non-contactable, there was no telephone number listed on their
testing form, the number listed was incorrect, or they are now
living outside the study area. For the patients who were con-
tactable (n¼31), 100% agreed to be interviewed; of these, 90%
completed the interview, obtaining a final sample of 28. Three
focus group discussions were conducted with 19 community
members in total.
Of the 28 patients who were interviewed, half of them were
recorded as having linked to HIV care and half as not. It is note-
worthy that during interview 8 of the 14 ‘not linked’participants
reported having actually linked to care, either to the clinic they
were referred to or another clinic elsewhere.
Data analysis led to the identification of several key themes as
influencing individuals' linkage to HIV care: (1) processing an HIV-
positive result and status acceptance and (2) value placed on health
care and the perceived need for HIV care services. Fig. 1 depicts
these themes, as elaborated in this section.
3.1. Processing an HIV-Positive result: shock, doubt and disbelief
Many participants reported experiencing shock after receiving
an HIV-positive test result, feeling distressed, and questioning how
they were infected and the source of HIV infection. Many strug-
gled to accept the diagnosis, with several doubting or disbelieving
the test result.
‘I was refusing to accept the result when they were telling me …
I'm still asking myself how I got infected’. P06
‘I really cried, I felt pain and was shocked that “oh my word”’.
P02
‘When sisi [HTC] told me that I am positive, I just did not believe
it. So I stayed for two years, and some people would come to do
testing, and I would not test because I was like these people tell
lies …’. P05
Periods of non-acceptance that were described ranged from
months to years and had marked consequences for many in-
dividuals' mental and physical health, seen as a significant barrier
to accessing care.
‘It is what can make someone ill, the fact that they do not
accept’.C06
Table 1
Characteristics of study sample participants and methods adopted for each.
Participant
group
Participants Data collection method
Group 1 Patients diagnosed HIV positive by community-based HTS Semi-structured interviews (n¼28)
Group 1a
Group 1b
Who are linked to care
Who are not recorded as having linked to care
n¼14
n¼14
Group 2 Health practitioners (with knowledge/experience of HTS
and linkage to care)
Semi-structured interviews (n¼11)
Group 3 General community members (HIV status unknown) Focus group discussions (n¼3, 6e7 participants per group, 19 participants total; 2 with women
aged 17e39 years, 1 with men aged 16e30 years)
S. Horter et al. / Social Science & Medicine 176 (2017) 52e5954
‘I came back and stayed here at home for almost a year, and I
would go to Nhletjeni and get some pills [not ART], and then it
later got worse and I lay down’.C04
Non-acceptance of HIV status was particularly evident among
those who had not felt unwell or were not experiencing symptoms,
which was reiterated by health practitioner participants. Partici-
pants reported confusion over receiving an HIV-positive result and
not identifying themselves as being HIV positive because of their
expectation that HIV infection comes with common symptoms.
‘If I had got it from him, there would be a difference by now. I
would have gotten sick and bedridden, but I just think that I do
not know’.C01
‘I stayed for the year telling myself that they are lying. It means
that my mind was acting childish because I would tell myself,
how come I am not sick and I do not have any pain’. P05
Many participants reported undergoing re-testing for HIV to
confirm whether the result they had received was true. Re-testing
and verifying the HIV-positive result appeared to be an important
step in accessing HIV treatment and care and ‘taking the necessary
steps’:
‘I wanted to see if the test was for real. I wantedto see if what we
did last time was realistic, and I found that it was realistic …I
found that I am really HIV positive, and that is when I accepted
that I am really HIV positive and when I started the ART’. C08
‘I was tested, and the result was the same as the one I got before
…and then I decided that I should then go to the clinic …
because I have heard two different people sharing that infor-
mation with me …’.P11
Still, this could potentially add to participants' confusion, as one
participant described receiving discordant results on re-testing:
‘I did not believe that they say now I am positive because yousee
I had tested just that week, and I tested again, I found it positive,
and I tested again the last time and found it negative. It made me
think, what is happening. That is what is making me question’.
C06
3.2. Perceptions of HIV risk
Non-acceptance of HIV status was exacerbated by not associ-
ating oneself with HIV through judgements about who gets HIV,
which shaped a sense of personal risk of infection. The reflections
individuals made about their perception of risk for HIV included the
described introduction of HIV in Swaziland linked to ‘prostitution’;
therefore, those who reported few sexual partners felt they were
not at risk. Perception of HIV risk continues to have associations
with the concepts of morality or social standards despite the
generalised HIV prevalence.
‘The way in which HIV was first introduced, that HIV is in those
who go sleeping around, so for those who know that they take
care of themselves, they are far away from thinking of being HIV
positive’. HP 02.
‘I can say I never got to accept it. What came to me was that I
questioned “me and HIV? But I am well behaved”’. P05.
Certain men presented as not identifying themselves with risk
of HIV infection, as having multiple partners was seen as a positive
and celebrated achievement for men, which they did not associate
with the negative connotations of ‘promiscuity’. Many men
described living a life of Christianity and not believing in sex before
marriage, which could be at odds with the reality of their sexual
practices, thereby creating misalignment of their beliefs, religious
practices, and HIV risk.
‘I live a life of Christianity. I was very shocked to find that it is
there …when it comes to sex …[pause] hmm let me say it is
possible for me to have gotten it through that because it does
not mean that I am this old and I have never, never had sex
without a condom’. C13, male
Those who expected that a positive result could be possible and
perceived themselves to be at risk of HIV could accept their status.
This was particularly apparent in the accounts of some of the
women who suspected HIV exposure through their partner's
refusal of condom use or their partner's infidelity, which they felt
put them at risk of HIV infection:
‘I found my boyfriend's treatment, and he had not told me that
he is HIV positive …I went to get tested and found that I am HIV
Fig. 1. The process of HIV status acceptance or non-acceptance: influencing factors and consequences.
S. Horter et al. / Social Science & Medicine 176 (2017) 52e59 55
positive …I was expecting it because my boyfriend is HIV
positive’. C08, female
3.3. Readiness to test and acceptance
Preparedness for the chance of receiving a positive result and
pre-test information appeared to be vital for acceptance of one's
HIV status. Participants described their feeling of being able to exert
choice in testing as influencing their preparedness for dealing with
the result and therefore their likelihood of accepting it. Testing
incentives were said to undermine this process, and participants
described instances where individuals' motivation to test was the
incentive (e.g., a t-shirt), rather than to know their health status,
which caused them to go into shock on receiving a positive result.
‘Testing when you want to test and you wish to test, it is better in
your spirit because you initiated it, so the results will also not be
so hard to accept emotionally’.C06
‘At the tents sometimes, they give incentives. And because as
Swazis, we are hungry, so if there is some incentive, I will not
stay behind, but that is not good …because they want to receive
those things but will they accept after that? I do not know’. FGD
02eP3
HIV-related counselling and information were seen to be crucial
in providing support and reassurance that there is life after HIV
diagnosis. Some participants reported needing time to process and
come to terms with their result.
‘I ended up going for counselling and accepting it. What helped
me the most and what I can advise that every person does is to
go for counselling because counselling helps a lot; it soothes the
soul and makes you able to accept the status you have’. C08
Individuals' acceptance of their HIV diagnosis and their sense of
hope and belief for living with HIV was emphasised through social
support and encouragement (which was achieved through disclo-
sure). Participants had seen others with HIV surviving, realised that
they were not alone or the minority affected by HIV, and had seen
the transformative effects of ART, compared to the past when many
had seen people around them dying due to HIV-related illnesses.
These experiences enabled individuals to move from questioning
where HIV could have come from to accepting and looking towards
the future.
‘I accepted my situation because I have seen others surviving
with the virus’. C03
‘I was not scared because there are others I know that are living
with HIV …That is what made me not be nervous, as well as
looking at other relatives who have passed on because of it and
not being educated about it’.C06
3.4. HIV status disclosure and linkage to care
Non-acceptance was described as a barrier to disclosure of HIV
status as the disbelief, perceived stigma, and fear of negative
judgement may force the HIV-infected individuals to hide their
positive result. Disclosure was seen to help the process of accep-
tance and support engagement in care and receiving treatment. It
enabled access to social support, reassurance, and encouragement,
including for treatment initiation decisions, clinic visits, and
treatment reminders.
‘I was able to [disclose] after I had accepted …I told them that I
am now someone who is like this. If you see me taking pills, do
remind me to take the pills when it is time’. C08
‘I accepted and decided to let them know because I'm going to
need their help and I want them to remind me when it's time to
take the treatment and also when going to the facility’.P01
Disclosure could influence linkage to care, with some partici-
pants who had not accessed care stating that they were waiting to
disclose before going to the health clinic. Participants described
how those who feared inadvertent disclosure of their status would
struggle to take their treatment consistently because they did not
want to be seen taking their treatment. This concern was consid-
ered significant enough to deter people from even seeking
treatment.
‘I'm waiting to talk to her first before I can go to the clinic’.C12
‘Some people die because of not telling their relatives. You find
that a male person has his friend but is unable to tell them that
they are taking treatment, so he ends up hiding the treatment …
they stop taking them because they are scared to tell the lover …
that is what kills them’. P03
3.5. Perceived need for and value placed on health services
The perceived need for and belief in the benefits of health care
were seen to influence whether individuals would link to care or
not. This was particularly evident where individuals did not feel
unwell, they had not experienced symptoms that they associated
with HIV, and where they did not accept their HIV status. This belief
therefore created the sense that seeking health care was not urgent,
and other life needs, such as work, household activities, and re-
sponsibilities, have higher priority.
‘I have not gone because I have not even had that cold. I am
someone who is working, and I have not felt that I was sick and I
cannot even work’.C01
‘Some would feel strong, see themselves very good, very healthy,
so they wouldn't see the reason for coming to the clinic’.HP01
For some, avoiding potential imminent health deterioration
motivated them to access services even in the absence of symptoms
because of the perceived benefits of accessing early care to avoid
reaching a ‘bedridden state’.
‘Going there when you're bit healthy is better than going there
when you're already lying down. This way you can live longer, as
if you don't have this thing’. C09
‘We want life …it is better to go to the clinic while you still can
walk there unlike when you're already sick and bedridden. That
is what motivated us'. P08
Avoiding a ‘bedridden state’was not only associated with health
benefits including avoiding risk of death, but was also seen in terms
of stigma reduction. Participants felt they would be able to main-
tain good physical health with early access to treatment, thereby
preventing them from developing symptoms and being identifiable
as HIV positive.
S. Horter et al. / Social Science & Medicine 176 (2017) 52e5956
‘I do not want to fall sick and get bedridden …and be a written
book for anyone to read’.P07
Though ART was described as enabling stigma reduction, some
participants felt reluctant to visit health clinics for fear that doing so
could reveal their HIV status. They feared confidentiality breaches
by health practitioners or of being seen queuing for ART-related
services, which could instil feelings of shame. These fears could
be particularly influential for those who had not fully accepted their
HIV status and who described them as deterring these individuals
from accessing HIV care.
‘The minute you sit on the bench, you are engulfed with
embarrassment and you feel ashamed, but then you must accept
yourself and not worry yourself about whether you see your
neighbour or anybody. We are all there to get the treatment’.P14
Seemingly, socio-cultural norms and expectations relating to
men could create difficulties for their accessing health services,
which was mainly described by health practitioner participants
who stated that males are less involved in all aspects of health
services. Furthermore, men were perceived as not wanting to go to
the clinic due to its association as being a woman's place, and the
expectation that men should be strong and not seek health care.
‘Going to the clinic is something I wouldn't have done except
when I'm being driven there in a wheel barrow’. P06 (male)
‘They are afraid to use hospitals …Mainly Swazi men …They
don't believe that much in hospitals. They prefer to do some-
thing else’.HP04
Counsellor attitudes and the approach taken with linkage
follow-up were important to patients. When patients felt as though
the health practitioner valued their life and wanted them to seek
care for their own well-being, it tapped into their sense of valuing
and prioritising healthcare. On the contrary, more aggressive ap-
proaches when patients felt they were being followed up for the
sole purpose of getting them to go to the clinic could undermine
their motivation and could cause feelings of disappointment and
distrust.
‘She really followed up on me, and called me and called me to
ask me and said she loved me very much. She stopped once I
went there, and I usually say, aw I thought she loved me but she
stopped calling me. She stopped once I went there’. P05
4. Discussion
Our study findings suggest that HIV status acceptance is
important for a person's engagement with HIV care and access to
social support, quality counselling, knowledge, attitudes, and
practices regarding health care. The process of status acceptance
was influenced by an individual's awareness that there was a
heightened probability they would receive an HIV-positive result.
Although past studies describe linkage to care and HIV status
denial, as far as we are aware, our study is the first to portray
acceptance as a longitudinal process in which supporters can
intervene to facilitate individuals' acceptance of an HIV-positive
result.
While the exact way in which someone processes an HIV-
positive result is heterogeneous and individually defined, certain
factors could influence the transition towards acceptance. These
include the perception of risk for potential HIV infection, including
judgements about HIV; an association of self with images of HIV
positivity; and counsellor support offering reassurance, encour-
agement, and hope for life after diagnosis. Although Swaziland has
the highest reported HIV prevalence rate in the world with a
generalised epidemic, an association of HIV with ‘promiscuity’and
‘prostitution’persists. Most participants did not identify them-
selves with these behaviours and therefore did not perceive
themselves to be at risk. This non-association with HIV risk led
many to experience shock and disbelief on being diagnosed HIV
positive and made accepting the diagnosis particularly challenging.
Other studies have found non-acceptance of HIV status, often
termed as denial, to negatively affect individuals' access to HIV care,
ART initiation and adherence (Beer et al., 2009; Jenness et al., 2012;
Lindkvist et al., 2015; Manirankunda et al., 2009; Nakigozi et al.,
2013; Nam et al., 2008; Otieno et al., 2010; Stinson and Myer,
2012; Wringe et al., 2009). Reiterating our findings, doubt and
disbelief on receiving a positive HIV result are associated with a lack
of HIV-related symptoms (Beer et al., 2009; Nakigozi et al., 2013;
Raveis et al., 1998; Wringe et al., 2009), and time can be required
to process, come to terms with, and accept an HIV-positive result
(Gilbert and Walker, 2010; Raveis et al., 1998). In our study, many
reported re-testing for HIV to verify if their result was true, and HIV
testing incentives were seen to undermine status acceptance.
Denial of HIV status has been linked to poor mental and physical
health (Kamen et al., 2012; Moitra et al., 2011). Still, our findings are
unexpected, given that shock and disbelief can prevail and prevent
PLHIV from accessing HIV care in a setting where HIV knowledge
and familiarity is high and where HIV is perceived to be increas-
ingly ‘normalised’through increased access to ART, transforming it
to a chronic manageable condition (Bernays et al., 2015; Russell and
Seeley, 2010).
How individuals respond to chronic diseases, including HIV, are
varied and contextual (Bernays et al., 2015; Harris, 2009). Various
theories can be applied in understanding individuals' reactions to
health and illness, and an HIV diagnosis has been described as a
transition (Russell and Seeley, 2010) and biographical reinforce-
ment (Bernays et al., 2015; Carricaburu and Pierret, 1995; Williams,
2000) through reinforcing components of identity and lifetime
illness experiences or struggles. Yet, because of commonly held
views related to morality and behaviour, an HIV diagnosis in this
context appeared to disrupt the ‘socially set standards and cultural
prescriptions of normality’(Bury, 1982), with a reaction of disbelief
and anxiety thus being more common, in line with Bury's (1982)
theory of biographical disruption. The reactions to an HIV-
positive result described in our study echo some of the stages of
grief that Kübler-Ross described by following a patient's diagnosis
with a terminal illness, which include shock, denial, anger, bar-
gaining, depression, and acceptance (Kübler-Ross et al., 1972). As
individuals progressed towards acceptance, elements of transition
appeared, with active adaptation to incorporate illness and its
treatment to daily life, developing approaches for self-management
of HIV and feeling ‘normal’again (Kralik et al., 2004, 2003; Russell
and Seeley, 2010; Telford et al., 2006). We found that acceptance,
disclosure of HIV status, and linkage to HIV care appeared con-
nected. Disclosure enabled support and reassurance, which aided
accessing care and cultivated hope (Gilbert and Walker, 2010;
Nakigozi et al., 2013; Nam et al., 2008).
The perceived need for and value placed on health services
increased individuals' motivation for seeking HIV care. This could
be challenged in the absence of symptoms, where the need for
health care was less evident, a factor that has been reported pre-
viously (Jenness et al., 2012; Nachega et al., 2014; Nakigozi et al.,
2013; Rosen and Fox, 2011). However, some participants
described learning about the benefits of early access to treatment
S. Horter et al. / Social Science & Medicine 176 (2017) 52e59 57
and care through receiving HIV information linked to the Test and
Start pilot and through seeing others with HIV experience health
deterioration in the absence of treatment. The avoidance of a
‘bedridden state’, which could render an individual identifiable as
HIV positive, had the potential to be a powerful motivator for
accessing care. Yet, fear of health practitioner confidentiality
breaches and experiencing stigma on being seen attending a health
clinic for HIV-related care were reported, as found by others (Beer
et al., 2009; Nakigozi et al., 2013; Raveis et al., 1998; Tumwebaze
et al., 2012; Wringe et al., 2009). In our study, this was particu-
larly prevalent among those who had not fully accepted their HIV
status and appeared to be more vulnerable to self-stigma.
4.1. Limitations
During initial patient interviews, it was clear that the inter-
viewer was being associated with the medical programme, which
subsequently improved following adaptations to the study intro-
duction, such as reiterating the non-association of the researchers
with medical teams. Interviews conducted with male patients
recorded as not linked to care were shorter and less in-depth
(including less participant open narrative) than those with fe-
males (average interview length: 30 min for males vs. 55 min for
females, with the exception of one 72-min interview conducted by
a female RA). Interviewer technique is likely to have influenced the
narratives of these participants, although this could also reflect
characteristics of the participant group.
Nearly half of the identified participants for study recruitment
were non-contactable because of a missing or incorrect phone
number captured during HTS. This reflects the operational chal-
lenges with linkage follow-up and may have affected the results,
with these participants potentially having different experiences
with testing and linkage to HIV care. In addition, two patients (one
recorded as not linked and one linked) did not attend the agreed
interview appointment, with unknown reasons for non-
participation. However, it appears that the themes that emerged
were robust and reiterated sufficiently to evidence data saturation.
Furthermore, the general participation response rate was good.
Although we had requested that focus group discussions be held
with community members who were similar in age, two of the
groups had a large age range. These differences may have influ-
enced the group dynamics, as younger participants were quieter
than older participants, which reflects the social interactions that
can be found within wider Swazi society. The generalisability of the
study's findings is limited to the concepts presented, which also
may not apply in different contexts or settings.
5. Conclusions
This research shows that how individuals process an HIV-
positive result can fundamentally affect their engagement with
health services. Status acceptance enabled access to social support
and increased a sense of need for and value placed on HIV services,
thus influencing individuals' linkage to HIV care. Although situated
within a generalised high-prevalence epidemic setting, many par-
ticipants in our study did not perceive themselves to be at risk of
HIV and struggled to accept a positive result. Being asymptomatic
could pose particular challenges for accepting an HIV diagnosis and
could create less sense of urgency regarding the need for health
services. Still, there were also perceived benefits from accessing
treatment and care early.
Our findings indicate the need to develop and test linkage
support strategies that address individuals' needs and facilitate
progression to HIV status acceptance. These could include sup-
porting diagnosis preparedness (e.g., through pre-test
information), exploring individuals' perceptions relating to HIV
risk, and expectations for the chance of receiving an HIV-positive
result. Counselling with clear goals is important within pro-
grammes to support status acceptance and disclosure. A flexible
approach to patient follow-up should be considered, with varied
intensity and types of support provided depending on the needs of
each individual and with the opportunity for multiple sessions
beyond the point of HIV testing if required. For example, certain
individuals may require more time to process and come to terms
with an HIV diagnosis before engaging in HIV care or initiating ART
than others. HIV prevention programmes should consider our
finding that HIV testing incentives undermined status acceptance
as individuals may be less prepared for a potential positive result.
These findings are particularly important in light of the move
towards the adoption of Test and Start approaches in many settings,
including in Swaziland. Engaging with how people respond to an
HIV test result is critical to the success of these initiatives, given
how crucial the processes of HIV diagnosis and follow-up are for
patients' access to HIV care. Without addressing specific patient
support needs and improving linkage to HIV care, these approaches
risk being ineffective in reducing HIV incidence and improving the
quality of care to PLHIV.
Acknowledgements
We thank all the patients and staff involved with the MSF/MoH
project in Shiselweni who contributed to this study, with particular
thanks to Dr. Bernhard Kerschberger, Dr. Inoussa Zabsonre and
Thomas A. Obulutsa and to the heads of clinical activities and heads
of community activities (MSF Swaziland). Thanks to Alison Wringe
(LSHTM) for reviewing the drafts and providing technical input,
and to Janet Seeley (LSHTM).
Appendix A Supplementary data
Supplementary data related to this article can be found at http://
dx.doi.org/10.1016/j.socscimed.2017.01.006.
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