Project Description

It is widely recognised that the constitutionally guaranteed right of access to healthcare implies access to quality healthcare, which among other entails healthcare provision free of coercion, discrimination and abuse. A central aspect of quality and patient-centred care is that: Patients are treated in a caring and respectful manner by staff who show appropriate values and attitudes and respect for patient privacy and choice.

This brief is based on data collected as part of a broader project aimed at documenting, monitoring and addressing HIV-related stigma, discrimination and other rights abuses – with the overall goal of creating enabling, supportive and safe environments for people to realise their rights, claim their agency, and access and benefit from available services. Women’s experiences clearly indicate that enabling legal and policy frameworks by themselves do not translate into social environments facilitating the realisation of rights…

THEY HAVE
NO RIGHT
TO DO THAT…
Women’s experiences of accessing healthcare
JOHANNA KEHLER
AIDS LEGAL NETWORK
The enjoyment of the right to health is not
just the physical possibility of accessing
a medicine or medical service in case of
illness. It includes a wide range of social,
legal and structural factors that impact
on agency, including the extent to which
people are in the position to safely make
informed decisions affecting their lives and
leading a healthy life. Thus, the right to
health is intrinsically linked with all other
fundamental human rights and freedoms,
ranging from the right to life and the right
to equality and non-discrimination to the
right to dignity, autonomy, and to be free
from all forms of violence in both public and
private spheres.
It is widely recognised that the constitutionally
guaranteed right of access to healthcare1 implies
access to quality healthcare, which among other
entails healthcare provision free of coercion,
discrimination and abuse. A central aspect of quality
and patient-centred care is that:
Patients are treated in a caring and respectful
manner by staff who show appropriate values
and attitudes and respect for patient privacy
and choice.2
In addition, the Department of Health National
Core Standards state that:
Patients receive the information they need
before they formally consent to any treatment or
participate in a study.3
THE LEGAL AND POLICY FRAMEWORK
South Africa’s constitutional, legal and policy
framework protects fundamental human
rights and freedoms, including the right to equality
and non-discrimination, to privacy, to autonomy
and informed consent, and to be free from all forms
of violence.4 Moreover, South Africa’s National
Strategic Plan on HIV, STIs and TB (2012 – 2016)5
reaffirms its commitment to a human rights-based
response to HIV, and as such identifies as one of its
principles that the national response ‘must be rooted
firmly in the protection and promotion of human and
legal rights, including prioritising gender equality and
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
2
gender rights’6. The National Strategic Plan (NSP)
further recognises that ‘women are particularly
vulnerable to HIV infection because of biological
vulnerability and gender norms, roles and practices’7;
and aims to address ‘the social, economic, political,
cultural and environmental factors that lead to
increased vulnerability’.
Recognising the potential adverse effects of
interventions in their implementation on the extent
to which especially women are in the position to
claim their agency and exercise their rights – for
example in the context of access to sexual and
reproductive healthcare services and HIV testing –
a pivotal aspect of effective rights-based responses
to HIV is to ensure that ‘rights are not violated in
the implementation of interventions’, and to afford
access to justice and redress mechanisms ‘efficiently
and effectively’, as and when rights violations
occur.8 However, limited levels of legal literacy and
knowledge about legislative and policy provisions
addressing HIV-related rights abuses, especially
among women, as well as inadequate application and
implementation of these provisions, create a situation
in which rights continue to be compromised in the
context of service provision; access to justice and
redress mechanisms remain limited; and, as research
revealed, the decisions by particularly women living
with HIV as to whether or not and when to access
services are often influenced by the fear of stigma,
violence and other rights abuses within healthcare.9
Moreover, deeply entrenched gender and social
norms, as well as prejudices and stigma, limit
women’s capacity to freely make informed
decisions affecting their lives, including sexual
and reproductive decisions, and whether or not
and when to access healthcare and treatment.
Subsequently – albeit the enabling legal and
policy environment, commitments and efforts
to ensure rights protections within healthcare
provision – women’s experiences illustrate that
accessing healthcare is more often than not
accompanied by rights violations – ranging
from coercion and lack of privacy to disrespect,
humiliation and denial of services.
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
3
THE DOCUMENTATION PROJECT
This brief is based on data collected as part
of a broader project aimed at documenting,
monitoring and addressing HIV-related stigma,
discrimination and other rights abuses – with the
overall goal of creating enabling, supportive and
safe environments for people to realise their rights,
claim their agency, and access and benefit from
available services.
This particular part of the project intended to
document women’s experiences of rights abuses
within healthcare settings; assess the occurrence
and prevalence of rights violations and implications
thereof for women accessing services; and enhance
the knowledge and evidence base on women’s
experiences of barriers to access to, and benefit from,
healthcare services free from stigma, discrimination,
coercion and other rights violations.
To this effect, an incident report form was designed
to capture the context and conditions under which
the incident occurred (i.e., what happened, when,
where and who was involved); explore women’s
responses; and assess women’s experiences of seeking
redress – both ‘informally’ and ‘formally’.
The documentation took place in selected areas in
and surrounding East London and King William’s
Town (Eastern Cape) between October 2014 and
May 2015. During the documentation process, the
AIDS Legal Network (ALN) worked in partnership
with S.H.E. in East London and Khanyisa in
King Williams Town. The assessment tool was
administered in and around clinic settings at a
community level.
In total, 530 incidences of rights violations against
women in healthcare settings were documented.
Of these, 60 incidences were excluded from the
subsequent analysis, as they were either not a
‘personal’ experience or not directly linked to the
clinic. Thus, for the purpose of this brief, 470
incidences capturing women’s personal experiences
of rights violations, as well as access to redress, have
been documented and analysed.10 The majority of
the incidences occurred in the last year prior to the
documentation (297, 63%).
WOMEN’S EXPERIENCES…
Coercion
…it is supposed to my decision to get tested,
not for them to decide that…
[Woman, 30s, East London]
Agency, choice, consent and informed decision
making are human rights principles centrally
embedded in South Africa’s constitutional, legal
and policy frameworks. Section 12(2) of the
Constitution guarantees everyone the right to bodily
and psychological integrity; with specific reference
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
4
to sexual and reproductive choices, and informed
consent in the context of health. At the same time,
the National Health Act clearly stipulates that ‘no
health service may be provided without a person’s
informed consent’11.
Women’s experiences of accessing healthcare
however illustrate an obvious gap between the policy
of ‘rights protections’ and the practice of ‘rights
violations’ within healthcare settings.
The documentation and assessment of rights
abuses within healthcare settings revealed that
women’s experiences of accessing healthcare
is often characterised by a lack of agency and
power to make decisions affecting their health
and life.
…they make us feel like we don’t have powers…
[Woman, 40s, King William’s Town]
Especially in the context of sexual and reproductive
healthcare, women seem to have least agency to make
informed decisions affecting their lives, as women
often find themselves in a situation in which access to
services seem ‘impossible’ without an HIV test. And
despite law and policy provisions placing informed
consent at the centre of HIV testing procedures,
women’s experiences seem to indicate a ‘practice of
conditional HIV testing’; in that without an HIV test
women may not receive the treatment or care they
sought when going to the healthcare facility.
As a result, women often feel that ‘you have to get
tested before you get helped’ [Woman, 20s, King
William’s Town]; a sentiment often confirmed by
healthcare providers at the clinic, leaving women in a
position of least agency to make informed decisions.
…we’re waiting to get helped and the nurse
came and told us to go to the room to get tested
before we get helped, because we need to know
our status…shouting at us that we are not using
condoms, but we don’t come to test…I feel
angry, because she has no right to force us…
[Woman, 30s, King William’s Town]
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
5
…she [the nurse] saying it is necessary for every
patient to test for HIV…and if I don’t, I won’t be
helped… [Woman, 30s, East London]
…I went for prevention, but the nurse said in
front of everyone that I need to test for HIV
before I can get prevention …if you don’t agree
you will not get the prevention you came for…
[Woman, 20s, King William’s Town]
…I went to the clinic, because I was not feeling
well…I was told I had to test for HIV first in order
to get help… and if I don’t, I won’t get help… I
didn’t feel good about it, because it was not my
decision… [Woman, 20s, King William’s Town]
Women in need of care thus often feel inclined,
pressured and coerced to ‘consenting’ to an
HIV test in order to get the treatment they
need, which in most cases is not associated with
HIV testing; and beyond the ‘need to know your
status’ argument.
…I was shocked, but agreed to test, because I
needed to be helped…
[Woman, 20s, King William’s Town]
…I did test for HIV, because they insisted…
[Woman, 30s, East London]
…I tested, because I knew if I wouldn’t, I wouldn’t
be helped…I did not feel good about it, because I
wasn’t ready…
[Woman, 20s, King William’s Town]
LACK OF PRIVACY
…she wasn’t supposed to do that,
she was supposed to help me…
[Woman, 20s, King William’s Town]
The right to have one’s dignity respected
and protected, and the right to privacy are
constitutionally guaranteed12; thus central to
South Africa’s legislative and policy framework. The
National Health Act further clearly prohibits the
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
6
disclosure of any information relating to a person’s
health status and/or reason for accessing healthcare
without consent13.
…I had to say in front of everyone that I was there
for an HIV test, even though that is private and
confidential… [Woman, 30s, King William’s Town]
In reality, however, it is as much the infrastructural
set-up of healthcare settings as healthcare providers’
attitudes towards and treatment of service users that
often lead to the disclosure of peoples’ HIV status –
without their consent. As such, accessing healthcare
seems to potentially not only compromise the right
to privacy, but also (as a result of the heightened risk
of rights violations) adversely impact on treatment
access and adherence.
Women’s experiences clearly illustrate the extent to
which women feel a lack of agency while accessing
healthcare as to whether or not, when and to whom
to disclose their HIV status.
…I worry a lot because people are going to find out
my status… [Woman, 30s, King William’s Town]
…I am HIV positive and I go to the clinic for my
treatment…I feel so uncomfortable, because
they isolate us from other people and I am not
ready to come out to other people…
[Woman, 30s, East London]
…I take treatment for HIV…when I go to the
clinic I have to tell everything to the security
guard before they let me in…even when I go
inside, I have to explain to everyone that I am
here for the HIV treatment…and when I finally
do get seen, I have to go to the special
HIV room… [Woman, 30s, King William’s Town]
Healthcare providers’ attitudes are one of the
recognised barriers to access to healthcare services.14
Sharing their experiences of accessing healthcare,
many women made specific reference to healthcare
providers ‘shouting’ and being ‘rude’ (115, 25%).
Reference was also made to ‘nurses not doing their
job’, since they are ‘sitting in the sun’ and ‘talking on
their phones’, while patients are waiting (146, 31%).
…she was supposed to help me, not yell at me…
[Woman, 30s, King William’s Town]
Being scolded and ridiculed while accessing HIV and
pregnancy prevention methods arguably do not only
constitute a violation of one’s fundamental human
right to dignity and respect, but also potentially
lead to a situation of not accessing these services
again, due to fear of further abuse; thus, among
others, leading to a situation in which women may
knowingly place themselves at greater risks of HIV
and unintended pregnancy.
…they got attitudes…I considered skipping
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
7
treatment because of this…they are rude…they
must treat us like patients, not streetwalkers…
[Woman, 50s, King William’s Town]
…I went to the clinic to get contraceptives for
the first time…I’m 17 years old and the nurses
shouted at me in front of everyone saying I am
too young to have sex…but they should be
happy that at least I am preventing pregnancy…
[Woman, 20s, East London]
…it makes me feel like I don’t want to go back to
that clinic…I’m pregnant now, but I’m scared to
go back…many people are scared to go to that
clinic… [Woman, 30s, King William’s Town]
…the nurses don’t respect us…they scream for
everyone to hear what medication we take or
why we’re there… [Woman, 40s, East London]
While many women felt ‘angry’, ‘upset’ and
‘disappointed’ about the way they were treated
(195, 41%), some shared that they felt ‘humiliated’
and ‘ashamed’ (39, 8%). Albeit emotional reactions,
women also clearly articulated that ‘the nurses were
wrong to do this’ [Woman, 30s, King William’s Town],
as ‘they didn’t have to act like this’ [Woman, 20s, King
William’s Town].
…I was so disappointed. I didn’t expect that from
them… [Woman, 20s, King William’s Town]
Women’s narratives also highlighted the impact
of the inherent power imbalance between service
providers and service users. As a result, women often
feel that they have limited power to participate in
healthcare decisions.
…I could not say no, because she was the nurse…
[Woman, 20s, King William’s Town]
Moving on and seeking redress
…they have no right to do that…
[Woman, 50s, King William’s Town]
Access to justice and redress as and when a person’s
rights have been violated are central aspects of
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
8
an enabling legal environment. In South Africa,
the right of access to justice is constitutionally
guaranteed15, as well as a key element of laws and
policies affording access to justice and redress both
within and outside the realm of healthcare.
The National Health Act outlines that any person
has the right to not only ‘lay a complaint about the
manner in which he or she was treated at a health
establishment’, but also to ‘have the complaint
investigated’.16 Further underscoring the importance
of access to redress and when a person’s rights have
been violated within healthcare settings, one of the
indicators for ‘improving values and attitudes’ in the
Department of Health National Core Standards
makes reference to:
Patients who wish to complain about poor
services are helped to do so and their concerns
are properly responded to by management, who
use complaints to improve service delivery at
that facility.17
Recognising the ill-treatment received at the clinic,
women participating in the documentation study
sought advice and redress both formally and
informally. However, women’s experiences of lodging
a complaint about the ‘poor services’, differ greatly
from these policy provisions.
…every time I write a complaint, I throw it in the
box, but we hear nothing about it…a waste of
my time, because they don’t pay attention to my
complaints… [Woman, 20s, King William’s Town]
Follow-up questions as to with whom and when
women shared their experience of accessing
healthcare revealed that the majority of women
shared what happened at the clinic with a family
member (192, 59%), partner (22, 7%), or friend (61,
19%) on the same day of the incidences.
…she told me to go back to the clinic and
demand to be helped, because it is my right…
[Woman, 30s, East London]
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
AREA INFORMAL REDRESS FORMAL REDRESS
Yes No Yes No
King Williams Town 80 20 24 76
East London 60 40 21 79
TOTAL 70 30 23 77
TABLE 1: WOMEN SEEKING REDRESS [%]
9
Levels of support and advice afforded to women
seeking informal redress greatly varies, ranging from
expressing ‘surprise’ about the ill-treatment and
‘affirmation’ of rights abuses occurring (100, 30%) to
underscoring the ‘need to report’ (59, 18%).
…it is wrong and needs to change…
[Woman, 40s, King William’s Town]
The responses women received also highlighted a
certain level of ‘acceptance’ that the violations of
rights experienced at the clinic are ‘normal’ and ‘just
the way it is’ when accessing healthcare. Thus, there
is ‘nothing you can do’, except to ‘go back’ (82, 25%).
…she told me to just accept the situation,
because we don’t have any other options…
[Woman, 30s, East London]
Contrary to this, women were also advised to ‘look
for services elsewhere’ and ‘change clinic’ (40, 12%),
which arguably indicates as much a recognition of
systemic rights abuses within healthcare settings at
a community level, as a lack of confidence that the
situation will improve.
…I thought they will improve their attitude
and poor services, since many people told them
to their faces that their services are poor and
unacceptable…but nothing has changed…
[Woman, 20s, King William’s Town]
Women who reported the incident (106, 23%) have
primarily done so within the healthcare system by
either lodging a complaint with the sister in charge
or the clinic committee (48, 45%) or by using the
‘suggestion box’ as a means of seeking redress
(25, 24%). However, many women felt that ‘nothing
came from it’, as ‘no actions were taken’ to respond to
their complaints and change the way in which services
are provided.
…if we report to the clinic, we see no change and
we do not see any follow-ups…so, I see no need
to report it… [Woman, 30s, East London]
Notwithstanding the need for enhancing levels
of legal literacy, many women are (contrary to
common assumptions) arguably aware of their
rights to agency, consent and privacy. Irrespective of
whether or not women express these rights explicitly,
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
10
women’s narratives of accessing healthcare facilities
show that they feel ill-treated, coerced and abused.
As such, women’s decisions as to whether or not to
seek redress are as much determined by a lack of
knowledge as to where and how to report incidences
of rights abuses within healthcare settings (‘I did not
know where to complain’, 110, 30%) as by a sentiment
that there is ‘no use to complain’ and ‘no use in
reporting’ (154, 42%).
…if the nurse can speak to us like that in front of
her colleagues…there is no use in reporting…
[Woman, 40s, King William’s Town]
At the same time, women also feel cautious and
scared to lay a formal complaint, as they fear the
consequences of such actions for their next visit to
the healthcare facility (30, 8%).
…I got scared of reporting thinking if I do it will
be a serious matter and I will end up not getting
any help next time… [Woman, 30s, East London]
…you will be treated even worse if
you complain… [Woman, 30s, King William’s Town]
Women’s experiences also highlight a certain level of
lack of trust in both the rights protections embedded
in access to healthcare and redress mechanisms
available as and when rights are violated.
…we can’t change the situation, because we
live with it…and it will be a waste of my time to
complain about it…
[Woman, 20s, King William’s Town]
…there is nothing I can do, I need my treatment…
[Woman, 40s, King William’s Town]
CONCLUSION
Women’s experiences clearly indicate that
enabling legal and policy frameworks by
themselves do not translate into social environments
facilitating the realisation of rights; as many women,
irrespective of rights protections in law and policy,
WOMEN’S EXPERIENCES OF ACCESSING HEALTHCARE
11
experience access to healthcare as yet another aspect
of their lives in which their agency is undermined
and their rights are threatened. As such, the
persistent gap between policy and practice seems to
be not only a central part of women’s realities while
accessing healthcare (in that women continue to have
limited agency), but also perpetuate to an extent
women’s greater risks to rights violations (in that the
gendered context of society to an extent justifies the
very same).
Without intensified efforts to create enabling social
environments (through transforming the societal
context in which rights are realised and services
are accessed), women will continue to be least in
the position to claim agency and realise rights –
irrespective of both the rights protections afforded
to ‘everyone’ in law and policy and women’s levels of
legal literacy.
As long as women feel ‘there is nothing I can do, I
need my treatment’, the enabling legal environment
will continue to have little to no impact on women’s
realities; thus nullifying the progress made. Thus, it
seems to be time to both prioritise and ‘fast track’
women’s needs in accessing healthcare, as well
as ensure that women’s experiences of accessing
healthcare are not only ‘heard’ and ‘responded to’,
but instead become the ‘evidence’ informing efforts
to enhance access to quality healthcare.
FOOTNOTES:
1. Constitution of the Republic of South Africa, Act 108 of
19, Section 27.
2. National Department of Health. 2011. Fast Track to
Quality: The six most critical areas for patient-centred
care. p6.
3. Ibid.
4. Section 9, 12 and 14 of the Constitution.
5. National Strategic Plan on HIV, STIs and TB, 2012 – 2016
[www.doh.gov.za/docs/stratdocs/2012/NSPfull.pdf]
6. Ibid, p25.
7. Ibid, p35.
8. National Strategic Plan on HIV, STIs and TB, 2012 –
2016, p54.
9. Kehler, J. et al. 2012. Gender Violence and HIV: Perceptions
and experiences of violence and other rights abuses against
women living with HIV in the Eastern Cape, KwaZulu Natal
and Western Cape, South Africa. AIDS Legal Network.
10. Of the 470 incidences included in the analysis, 237 were
from King Williams Town areas and 233 from East
London.
11. National Health Act, No 61 of 2003, Section 7(1).
12. Section 10 and 14 of the Constitution.
13. Section 14(1) and (2) of the National Health Act.
14. National Department of Health. 2011. Fast Track to
Quality: The six most critical areas for patient-centred
care; UNAIDS. 2013. Getting to Zero: HIV in eastern and
southern Africa, pp70-71.
15. Section 34 of the Constitution.
16. Section 18(1) of the National Health Act.
17. National Department of Health. 2011. Fast Track to
Quality: The six most critical areas for patient-centred
care. p6.
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