[Viva] Fwd: CATIE News - Canadian women's experiences receiving a hepatitis C diagnosis

[Tami Starlight]

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---------- Forwarded message ----------
From: CATIE <mailer at catie.ca>
Date: Thu, Mar 2, 2017 at 11:14 AM
Subject: CATIE News - Canadian women's experiences receiving a hepatitis C
diagnosis
To: tamistarlight at gmail.com


CATIE News - Bite-sized HIV and hepatitis C news bulletins
CATIE News - Canadian women's experiences receiving a hepatitis C diagnosis

The rate of hepatitis C is on the rise among Canadian women, in particular
among women aged 15 to 29 years old. Approximately 60% of new infections in
this age group are in women.

Detecting hepatitis C early in women is key for accessing timely care,
treatment and support in order to improve health outcomes and quality of
life. Having a chronic illness can be especially difficult for women
because of its social impact, particularly when the illness is as
stigmatized as hepatitis C. This stigma can also create barriers to
healthcare access.

Diagnosis is a critical opportunity for connecting people to hepatitis C
care. However, some research has found that people often have a poor
experience with the hepatitis C testing process. Some people with hepatitis
C report that they perceive that healthcare workers have negative attitudes
toward them. They also report that healthcare workers provide little
support or information about hepatitis C. When people diagnosed with
hepatitis C have limited information, it can result in reduced follow-up
and access to hepatitis C care, increased fear about hepatitis C and
feeling a lack of control over one’s health.

A recent study aimed to better understand the experiences of Canadian women
who receive a hepatitis C diagnosis and to provide recommendations about
how to improve hepatitis C testing experiences.
Study participants

Twenty-five women from three Canadian provinces participated in interviews
about their experience receiving a hepatitis C diagnosis. They were from
urban, suburban and rural parts of Canada. The vast majority of
participants were over 30 years of age.

Twelve of the participants were diagnosed with hepatitis C more than 10
years ago, and seven found out they had the virus five years ago. Most of
the participants were diagnosed by their family doctor, a methadone
prescriber or a doctor at a walk-in clinic. Just over half received
hepatitis C treatment some time after diagnosis.
Being prepared for the diagnosis

The degree to which a woman felt ready to receive a positive hepatitis C
diagnosis greatly impacted the experience of receiving the diagnosis.

Eight of the 25 study participants reported being unprepared for a positive
hepatitis C diagnosis. Some were tested for hepatitis C when they went to a
healthcare provider either because of a symptom, such as jaundice, or a
generalized feeling that something was wrong. They reported that their
healthcare provider decided to give them a hepatitis C test but in many
cases did not tell them they were being tested. When they received a
positive hepatitis C diagnosis, they said they were not ready for it and
were confused about how they might have gotten the virus.

Eleven of the participants received a hepatitis C test for one of three
reasons: as part of a routine exam for an insurance application, screening
for a blood donation, or as a follow-up to a test showing abnormal liver
enzymes. These women reported that they did not receive a risk assessment
prior to the hepatitis C test and, in some cases, were not informed that
they were being tested for hepatitis C. They were not expecting to find out
they had hepatitis C and reported feeling unprepared, shocked and
bewildered when they received the results. Not receiving a risk assessment
before receiving a diagnosis caused a lot of confusion for these women
because they were not aware of how hepatitis C is transmitted.

Another small group of participants went for hepatitis C testing because of
a suspected exposure to hepatitis C, such as through the Canadian blood
supply prior to 1992. However, these women were unprepared for a positive
hepatitis C test result due to having little or no information about what
hepatitis C can do to the body.

Several women requested hepatitis C testing because they were aware of a
reason why they might have been exposed to hepatitis C. These participants
were ready to find out they had hepatitis C and despite experiencing some
shock were able to accept the diagnosis.
Hepatitis C education during the testing process

Study participants received widely varying amounts of information about
hepatitis C during the testing process, with some women reporting they
received limited or no information and others reporting that they received
an adequate amount of information. Other women reported receiving
misinformation.

The information provided during the testing process impacted how the women
in the study perceived having hepatitis C and their experiences with
further healthcare.

Women who received no basic hepatitis C information or instruction about
follow-up care described their testing experience as confusing and
distressing. They were unclear about how hepatitis C would affect their
bodies. For some women, this led to them disconnecting from care.

Some women came to believe that they would die soon from hepatitis C and
that there was little they could do to change that, so they did not seek
more information. Other participants did not understand that hepatitis C
was a serious illness.

Some women who received additional healthcare at a later date discovered
that the healthcare provider who diagnosed them had given them incorrect
hepatitis C information.

The small number of participants who felt that they had received enough
information about hepatitis C when they were diagnosed felt ready to make
decisions about managing their health. Most of these women were diagnosed
by a healthcare provider with whom they had an ongoing relationship. They
reported feeling motivated and able to make changes in their life.
Moving forward with hepatitis C testing

Given that hepatitis C testing is done in a range of settings with
providers who have differing levels of hepatitis C knowledge, testing
experience and skills, the researchers recommend that the development of
Canadian hepatitis C testing guidelines be developed, and that these
guidelines encourage a minimum amount of hepatitis C information to be
given during testing. They suggest that these guidelines specify the
minimum amount of information to be given during testing and recommend
topics to be covered during both pre- and post-test counselling. Moreover,
in order to be effective, hepatitis C testing guidelines would need to be
supported with relevant policies, strategies and frameworks.

As improved hepatitis C medications with fewer side effects become
available across Canada, hepatitis C treatment will likely move away from
specialist care into primary and community care. This is why it is critical
for healthcare providers administering hepatitis C testing to be adequately
trained in the appropriate information and skills to be able to deliver
accurate education and care to women diagnosed with hepatitis C.

A key part of successful hepatitis C testing and care would involve asking
women about their knowledge of hepatitis C, even if they have received
hepatitis C testing or care previously, because they may have received
inadequate or inaccurate information.

As people with hepatitis C often experience discrimination, it is important
to provide testing and information in a non-judgmental way. This is
especially important for pregnant women who often experience extra scrutiny
of their behaviours, especially if they inject drugs. Negative experiences
may deter people from seeking further hepatitis C care and treatment.

While some healthcare providers may downplay the importance of the
hepatitis C testing process, it is a critical time for education and
connection to care and treatment.

*Resources*

Hepatitis C pre- and post-test counselling information
<http://www.catie.ca/en/practical-guides/hepc-in-depth/testing/counselling-info>

Diagnostic tests
<http://www.catie.ca/en/practical-guides/hepc-in-depth/testing/types-tests-diagnostic>

*—Scott Anderson*

REFERENCE:

Mitchell S, Bungay V, Day CA, Mooney-Somers J. Has the experience of
hepatitis C diagnosis improved over the last decade? An analysis of
Canadian women’s experiences. *Canadian Journal of Nursing Research*
2016;48(1):21–28.


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