CERC United States Virgin Islands Qualitative Presentation

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CERC United States Virgin Islands Qualitative Presentation
Faith, Courage, and Pray:
Pregnant Women’s HIV/AIDS
Experiences
8/12/2017
Purpose
2
This qualitative study described how knowledge,
attitudes, beliefs, feelings, and abuse may influence
decisions about participating in voluntary testing
and counseling, treatment adherence; follow up
care, disclosing disease status to family and friends,
and decisions related to parenting.
10/16/2009
Methods
3
 In-depth interviews using open ended
questions were used to ask about women’s:
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Demographic characteristics
Pregnancy health history
Decision-making about HIV testing
Disclosure of test results
Behaviors and changes in their relationships related
to test results and disclosure
Partner relationships
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Methods
4
 The individual interviews:


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Took 30-60 minutes
Were transcribed and analyzed informed by the
descriptive phenomenological method (Koch, 1995; Lopez
& Willis, 2004) to gain better insight into the experiences
of the women
Were re-read multiple times to ensure
methodological rigor and trustworthiness of data
interpretation
8/12/2017
Results
5
 Sample (N= 56)
 44 pregnant women
 12 parenting women
 HIV/AIDS diagnosis at time of interview
 1 month to 9 years
 Average was 2.5 years since diagnosis
 3 women acquired HIV through vertical
transmission
 9 themes emerged from the interviews
8/12/2017
Themes
6
1.
Women perceived themselves as vulnerable to get infected
with HIV.
2.
Decision to get tested was motivated by perceived benefits
to the baby.
3.
Decision to disclose their HIV status was determined by
perceived risks.
4.
Family members’ reactions to women disclosing their HIV
status ranged from caring to being abusive.
5.
Women’s behaviors included protecting themselves if they
were HIV negative; and living healthy lifestyles and taking
their medications if they were HIV positive to protect their
baby and care for other children.
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Themes
7
6. Women mustered the strength and took positive attitudes to
deal with the devastation of HIV experiences.
7. Women felt that having babies was a way to be happy, have a
sense of self-worth, and purpose.
8. Women were sexually assaulted at very young ages and
subsequently got infected with HIV by their abuser.
9. Women found strength and resilience through HIV/AIDS
experiences.
8/12/2017
Qualitative Analysis
Theme
1. Women perceived
themselves as
vulnerable to get
infected with HIV
Exemplar
8
“I was mentally prepared because I know I was at
risk. My partner then was an IV drug user. I was
in rehab. I knew about HIV. I got tested in rehab
before last baby” (38yr; HIV+; married)
“Anybody could get the disease. I knew it would be
negative. So I did not expect any different” (21 yr;
HIV+ single)
2. Decision to get
tested was
motivated by
perceived benefits
to the baby
3. Decision to disclose
their HIV status
was determined by
perceived risks
“… It was not optional to me. For the health of my
baby and myself … “ (39 yr; HIV+ married)
“… more concerned about the baby versus me.
Didn’t want baby to be infected…” (32 yr; HIV+; single)
“ only my cousin in St. Louis … not my mother/ not
my partner, but he’s seen me taking pills. I am kind
of scared to tell him” (28 yr; HIV +; single)
8/12/2017
Qualitative Analysis
Theme
4. Family members’ reactions
to women disclosing their
HIV status ranged from
caring to being abusive
5. Women’s behaviors includes
protecting themselves if
they were HIV-; & living
healthy lifestyles & taking
their meds if they were HIV
+; to protect their baby &
care for other children
6. Women mustered the
strength & took positive
attitudes to deal with the
devastation of HIV
experiences
Exemplar
9
“My husband
freaked out he went to the bathroom 2
or 3 hours. He was talking about checking himself.
If he was negative, he would have penalized me.
Before I was positive, it was bad. I was going to
leave him. There were a lot of financial problems.
…Bad things make things okay. Now he is behaving
like a husband. Very caring and willing to do what I
tell him” (38yr; HIV+; married)
“… cautious and will continue to protect myself.
More cautious about AIDS and diseases ” (36 yr; HIV
–; married)
“… “I just would like to have a healthy baby and live
a healthy life” (24 yr; HIV+; single)
“… I try not to be hard. … & be like “oh I don’t have
any more life.” It is a virus that I have, but I never
going to dread away. So it is something I am going
to live with that. But my life don’t want to stop for
that. My life is going to continue so that is the
attitude and the possibility was yes amazing …great”
(33 yr; HIV+; married)
8/12/2017
Qualitative Analysis
Theme
Exemplar
7. Women felt that having
babies was a way to be
happy, have a sense of
self-worth and purpose
“She [ physician] was very concerned that I was
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pregnant again. She said, why I have to have another
baby if I already have two babies. Why? And that really
hurt my feelings. My depression got much better during
the pregnancy because the baby gave me a lot to think &
a lot to plan & I was not depressed at all. I was happy. It
was amazing because as soon as the baby was born, I
had to take the anti-depressant again. The baby gave me
all & it was very beautiful ” (33 yr; HIV+; married)
8. Women were sexually
assaulted at very young
ages and subsequently
got infected with HIV by
their abuser
“I had a dysfunctional family. I got raped at 8 years. My
mother was physically & verbally abusive” (38yr; HIV+;
9. Women found strength
and resiliency through
HIV/AIDS experiences
“It is scary but at the same time you have to have faith,
believe in yourself; have courage and pray.” (27 yr; HIV+;
married).
“I got HIV at 12, raped by my boyfriend’s father who was
HIV+…” (20 yr; HIV+; single)
single)
“At first I felt like it was a death sentence and then I
looked at it from the spiritual point of view and I got a
8/12/2017
better understanding of life” (35yr; HIV+; single).
Limitations
11
 Self report instruments were used, so women may
have failed to divulge important information about
their HIV status and abuse experiences
 Convenience sampling limits external validity –
women were already receiving health care and HIV
testing was part of routine care
 The sample size was small reducing, statistical
power to find an effect, but the descriptive findings
and summary statistics suggest that most women
experienced lifetime abuse rather than abuse
during pregnancy
8/12/2017
Conclusions
12
 Perceived risks of disclosure, such as being
ostracized and fear, prevented women from
disclosing
 Women infected with HIV were more willing to
disclose if they had someone they trusted
 Married women immediately disclosed their
HIV status to their husbands. Results are
similar with Peltzer & colleagues (2008), who found
highest disclosure with partners (51.7%; n=116)
8/12/2017
Conclusions
13
 Single women disclosed to a female relative
– mother, aunt, or sister
 Though abuse was not found to be
significantly associated with HIV status, the
percentage of lifetime abuse reported by the
women is concerning and needs further
investigation
8/12/2017
Conclusions
14
 Women’s perception of benefits such as
keeping their baby healthy motivated their
decision to get tested. Same was found in
other studies (Kirshenbaum & colleagues, 2004; Minnie &
colleagues, 2008; Ransom, 2005)
 When asked about their confidence in
parenting, most women reported that
taking their medications & caring for
themselves will ensure that their baby stays
healthy
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Conclusions
15
 Of the 22 women who were HIV positive,
only one (1) found out when she was
pregnant and wanted to continue with the
pregnancy. In contrast to a previous study
(Suryavanshi & colleagues, 2008)
 Women were knowledgeable about HIV
transmission including vertical
transmission; & preventive behaviors
8/12/2017
Implications
16
 Need structured counseling & educational
services to increase disclosure and
subsequent HIV risk reduction behaviors
 Need counseling related to decisions about
pregnancy and plans for future pregnancies
 Involve women who are interested in HIV &
violence prevention initiatives
8/12/2017
Implications
17
 Integrate HIV & violence prevention in school
curricula
 Implement the opt-out testing
recommendation in mainstream health care in
addition to prenatal clinics
 Conduct a larger, experimental study using
block design to ensure equal number of
participants in each group and increase
statistical power
8/12/2017
Acknowledgements
18
We extend our heartfelt gratitude to the
following for their contributions to this
project:
JHUSON
 Mathew Hayat, PhD, Biostatistician
 Amy Goh, RN, BSN, Research Assistant
 Iye Kamara, RN, BSN, Research Assistant
 Ayanna Johnson, RN, BSN, Research Assistant
 Nadiyah Johnson, Academic Program Coordinator
USVI
 Tyra DeCastro, Administrative Assistant
 Lorna Sutton, Program Administrator
8/12/2017
References
19
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http://www.cdc.gov/hiv/topics/perinatal/1test2lives/about.htm. Retrieved July 22,
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http://cdc.gov/hiv/topics/aa/index.htm. Retrieved July 11, 2009.
http://womenandaids.unaids.org/ Retrieved 2/16/06
Kirshenbaum, S., Hirky, A., Correale, J., Johnson, M., et al., (2004). “Throwing the
dice”: pregnancy decisionmaking among HIV-positive women in four U.S. cities. Perspectives on Sexual and
Reproductive Health, 36(3), 106 – 113.
Koch, T. (1995). Interpretive approaches in nursing research: the influence of
Husserl and Heidegger. Journal of Advanced Nursing, 21, 827-836.
Lopez, K. A. & Willis, D. G. (2004). Descriptive versus interpretive phenomenology:
their contributions to nursing knowledge. Qual.Health Res., 14, 726-735.
Minne, K., Klopper, H., & Walt, C. (2008). Factors contributing to the decision by
pregnant women to be tested for HIV. Health Sa Gesondheid, 13(4) 50 – 65.
Peltzer, K., Chao, L., & Dana, P., (2008) Family planning among HIV positive and
negative prevention of mother to child transmission (PMTCT) clients in a resource
poor setting in South Africa. AIDS and Behavior.
Ransom, J., Siler, B., Peters, R. & Maurer, M. (2005). Worry: Women’s experience of
HIV testing. Qualitative Health Research, 15(3), 382-393.
Suryavanshi, N., Erande, A., Pisal, H., Sastry, J., et al. (2008). Repeated pregnancy
among women with known HIV status in Pune, India. AIDS Care, 20(9), 1111 – 1118.
8/12/2017
Contact Information
20
 CERC - http://www.cercuvi.com/
 Phyllis Sharps – [email protected]
 Veronica Njie-Carr – [email protected]
 Doris Campbell – [email protected]
8/12/2017

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