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The
role of stigma in reasons for HIV disclosure and
non-disclosure to children
R.
A. OSTROM, J. M. SEROVICH, J. Y. LIM, and T. L. MASON
Department of Human Development and Family Science, The
Ohio State University, USA
Correspondence: Robin A. Ostrom, Department of Human
Development and Family Science, 1787 Neil Avenue,
Columbus, OH 43210, USA. E-mail:ostrom.8@osu.edu
 The publisher's final edited version of this
article is available at
AIDS Care.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1381980
Abstract
This study examined how stigma may
impact HIV-positive women’s disclosure to their
children. Participants included HIV-infected women
recruited from AIDS service organizations located in
large midwestern cities. Using a questionnaire and
guided interview, quantitative data were obtained
regarding perceived HIV-related stigma and rates of
maternal disclosure to children aged 5–18. According to
the Kruskal-Wallis test, comparison between the
disclosure groups showed non-significant differences in
the total score of HIV stigma (χ2 =
0.518 with df = 2, p = 0.77). |
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Introduction
Given that approximately 80% of
women with AIDS are within their reproductive years (Siegel
& Schrimshaw, 2001), uncertainty about the
future can include concern about who will take care of
their children should they become incapacitated or die (Reyland
et al., 2002). This additional stress can
directly impact both the family and children,
particularly when women must ‘hide’ their illness to
protect their children. Relatedly, mothers with HIV
infection may also face the realities of the stigma
associated with HIV.
Stigma, HIV and women
One characteristic unique to an HIV
diagnosis is stigma. A person with a stigma is ‘reduced
in our minds from a whole and usual person to a tainted,
discounted one’ (Goffman,
1963). Stigma associated with HIV is thought
to originate from the dislike of marginalized groups who
were initially infected with HIV (Herek
& Glunt, 1988). HIV bears the pre-existing
stigma associated with sexual behaviors and illegal drug
activity, as well as fatality and viewing individuals as
transmitters of the virus (Herek
& Glunt, 1988;
Pryor et al., 1999). For women in particular,
HIV-related stigma can cause them to be labeled as drug
users, prostitutes (Bunting,
1996) or being sexually promiscuous.
HIV disclosure and stigma
Based on preconceived notions
regarding HIV-positive persons, stigmatization may have
an impact on disclosure decisions. Researchers have
suggested that the disclosure decision-making process
theoretically results from people weighing the pros and
cons associated with disclosure (Armistead
et al., 2001;
Black & Miles, 2002;
Serovich, 2001). Contemplation of disclosure
might include the possibility of garnering emotional or
instrumental support; however, it may also subject them
to rejection (Draimin,
1993). Disclosure to others also decreases
the ability to control secondhand disclosure by others.
Theoretically, then, mothers must consider that
disclosure to children increases their vulnerability (Murphy
et al., 2001). Women are concerned that their
children might be unable to keep the diagnosis secret
resulting in stigmatization and isolation for them (Moneyham
et al., 1996;
Murphy et al., 2002).
There is limited empirical research
regarding the impact of stigma on a mother’s decision to
disclose to her children. Studies regarding HIV-positive
women and stigma have typically been conducted
qualitatively or without a standardized measure of
stigma (Ingram
& Hutchinson, 1999;
Letteney & La Porte, 2004;
Murphy et al., 2002;
Sowell et al., 1997). These studies are
informative in understanding the mechanism of mothers’
disclosure to children; however, they suffer from
several limitations. First, scales utilized are
typically not created for the purpose of gauging the
perceived stigma of HIV–positive people and therefore
were revised. In addition, studies artificially divide
women into just two groups (i.e., disclosure group
versus non-disclosure group) (Letteney
& La Porte, 2004). However, mothers sometimes
decide to disclose to some of their children but not
all, making this grouping selection limiting. Thus, a
more comprehensive assessment of a construct as complex
as stigma is warranted and one examining the
relationship between perceived HIV stigma and mothers’
disclosure to children according to disclosure
sub-groups may be more robust.
Purpose
Previous studies investigating
stigma associated with HIV disclosure are few and each
is limited in a number of ways. The purpose of this
study was to use a standardized HIV stigma assessment
with a sample from the midwest and to further explore
and quantitatively assess what role stigma played in the
reasons women gave regarding their choice to disclose or
not to disclose their HIV status to their children. It
is hypothesized that the level of perceived stigma will
be positively associated with reasons for non-disclosure
and negatively associated with reasons for disclosure.
Furthermore, this study examined the degree to which
stigma plays a role in women’s decisions to disclose to
children. It is hypothesized that perceived experience
of HIV-related stigma will differ significantly between
women who have disclosed their HIV status to none, some
and all of their children. |
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Methods
Sample
Participants for this study were
HIV-positive women participating in a larger,
longitudinal study of HIV disclosure and mental health.
All participation was voluntary and refusal to
participate or dropping out of the study did not
endanger or compromise participants’ treatment at any of
the sites. Participants were interviewed by trained
doctoral students, who then conducted the assessments.
All interviewers completed 4–6 hours of training by the
PI or Post-Doctoral Fellow and were supervised weekly.
Eligibility requirements for this
study were minimal. The participants were women who were
HIV-positive or had AIDS and were 18 years old or older
at the time of enrollment. The recruitment sites
included large medical facilities associated with a
large midwestern university medical center and nonprofit
AIDS service organizations in the three largest
metropolitan areas of the state (Cleveland, Columbus and
Cincinnati). For this investigation, women were eligible
if they had at least one biological child and had
completed wave two of data collection where the stigma
measure was administered. The final sample included 45
women and one randomly selected biological child for
each woman. Ages of participants ranged from 22–49 and
the mean age was 36.1 years. These women were primarily
African-American (80%), with the remaining endorsing
Caucasian (18%) and Hispanic/Latino (2%) as their race.
The average monthly income was $1,422, 51% of the women
were married, partnered or dating and 33% of the women
were single. The mean length of time since diagnosis was
8.3 years. The randomly selected biological children
were composed of 17 boys (38%) and 28 girls (62%). These
children were aged between 5–18 years old and the mean
age was 12.4. Twenty-eight children knew of their
mother’s diagnosis (62%), and 24 of those children had
been disclosed to by their mother.
Instruments
Disclosure was measured with a
social network screening questionnaire that ascertained
the extent of the available social network and the
actual number of those in the social network to whom
they had disclosed. An adaptation of Barreras’ Arizona
Social Support Interview Schedule (ASSIS;
Barrera, 1981) was used for this purpose.
After administration of the ASSIS, demographic
information on each network member was obtained,
including their gender, age, race, relationship with the
participant, length of relationship, physical proximity,
if this person knew they were HIV-positive and, if so,
who disclosed to them.
After demographic information was
collected, participants were asked about the reasons
they might have considered before disclosing or deciding
not to disclose to each particular person. Reasons for
disclosure and non-disclosure to children were assessed
with two scales adapted from
Derlega et al. (2004). The scales included 16
statements designed to garner reasons for disclosure and
20 reasons for non-disclosure. Participants were asked
to rate each reason for disclosure and non-disclosure on
a five-point Likert-type scale for each child named in
their social network. In this study Chronbach’s alphas
were acceptable (disclosure alpha = 0.77; non-disclosure
alpha = 0.89)
Perceived stigma was measured with
the HIV Stigma Scale (Berger
et al., 2001). The instrument has 40 items
measured on a four-point Likert-type response set.
Reliability for the total scale is 0.96, and is 0.93 for
the personalized stigma sub-scale, 0.93 for the
disclosure sub-scale, 0.88 for the negative self-image
scale, and 0.93 for the public attitudes. The assessment
consists of four sub-scales: personalized stigma,
disclosure, negative self-image and public attitudes.
Data analysis
In order to investigate reasons for
non-disclosure and disclosure and the relationships
between these reasons and HIV-related stigma,
descriptive statistics and correlation analyses were
performed. To examine the association between
HIV-related stigma and women’s disclosure groups (i.e.,
none, some and all), the Kruskal-Wallis test for global
comparison was performed. This non-parametric test was
used because each group did not follow a normal
distribution and had a relatively small sample size.
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Results
Reasons for disclosure
The purpose of this study was to
further explore and quantitatively assess the role
stigma plays in women’s decisions to disclose or not to
disclose their HIV status to their children. To begin,
descriptive statistics were performed for reasons women
endorsed for disclosure to children. The most strongly
endorsed reasons for disclosure to children included
wanting the child to hear the diagnosis from the mother,
that the child had a right to know, wanting the child to
know what was wrong with the mother and wanting the
child to prepare for what might happen. Overall (95%),
women did not regret telling their children (see
Table I).
In order to investigate the degree
to which stigma is related to reasons for disclosure,
correlations were performed between the four stigma
sub-scales and each reason. Results revealed a
statistically significant correlation between only two
of the 16 reasons for disclosure and stigma sub-scale
scores. A mother’s decision to disclose to reassure her
child was correlated with negative self-image (r
= −0.43). That is, mothers who experienced less stigma
also reported wanting to disclose as a means of
reassuring their child. Maternal impromptu disclosure
was correlated with public attitudes sub-scales (r
= −0.49) and the negative self-image sub-scale (r
= −0.46). That is, mothers who experienced lower levels
of stigma reported disclosure of their status to
children without any specific reason or concern.
Reasons for non-disclosure
The most strongly endorsed reasons
for non-disclosure included thinking the child deserves
to have as carefree a childhood as possible, not wanting
to scare the child, not wanting the child to worry about
the mother and not wanting the child to be hurt by the
reactions of others (see
Table II). Correlation analysis revealed a
statistically significant correlation between five of
the 20 reasons for non-disclosure and the stigma
sub-scale scores. A mother not disclosing because her
diagnosis is personal was correlated with the public
attitudes sub-scales (r = 0.45). Also, a mother
not disclosing because of the stress associated with
telling a child was correlated with personalized stigma
(r = 0.46). Mothers who experienced stigma also
thought that their diagnosis was personal and reported
not disclosing because of the disclosing stress. A
mother not disclosing due to fear that the child may
tell others was correlated with the personalized stigma
sub-scale (r = 0.45) and negative self-image (r
= 0.49). That is, mothers who experienced stigma also
reported not disclosing to their children because of
fear that the child may tell others. Finally, a mother
not disclosing because she does not want her child to be
burdened or would like to keep this information from the
child was correlated with negative self-image (r
= 0.46; r = 0.46). That is, a mother who has a
negative self-image is not disclosing because of concern
about her children. Although neither of these reasons
was among the top four most endorsed reasons, their mean
scores demonstrated that they were a factor in the
women’s decision not to disclose.
HIV perceived stigma
To examine the degree to which
stigma played a role in women’s decisions to disclose to
children, the women were split into ‘all’ (n =
18), ‘some’ (n = 9) and ‘none’ (n = 18)
categories for disclosure group. Women who told none,
some or all of their children were not statistically
different in terms of demographics.
To test the main hypothesis that
perceived experience of HIV-related stigma will differ
significantly among women who have disclosed their HIV
status to none, some and all of their children, the
Kruskal-Wallis test was performed. According to the
test, comparison between the disclosure groups showed
non-significant differences in the total score of HIV
stigma (χ2 = 0.518 with df = 2, p
= 0.77). To ensure that there were no differences in
terms of types of stigma, four additional Kruskal-Wallis
tests were performed. Results suggested there was no
difference among women who tell none, some or all of
their children to the degree to which they experienced
personalized stigma (χ2 = 0.51, p =
0.78), stigma related to disclosure (χ2 =
3.57, p = 0.17), negative self-image (χ2
= 1.09, p = 0.58) or public attitudes (χ2
= 0.73, p = 0.70). See
Table III for means and standard deviations
of sub-scale scores. |
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Discussion
Using a quantitative HIV stigma
scale (Berger
et al., 2001), this study assessed the role
that stigma played in women’s decisions to disclose
their HIV status to all, some or none of their children,
as well as how stigma impacted the reasons women
provided for their decision. Previous research has
concluded that stigma plays a large part in women’s
decision to disclose their HIV status (Forsyth
et al., 1996;
Ingram & Hutchinson, 1999;
Moneyham et al., 1996;
Murphy et al., 2002;
Sowell et al., 1997); however, this claim was
not supported in this study. Stigma only played a
minimal role in the reasons for disclosure and
non-disclosure and was not experienced differentially by
women in this sample who disclosed to all, some or none
of their children. The results of this study suggest
that women are interested in taking the lead role in
disclosing to their children and make the decision based
on the child’s ability to cope with the information,
thereby reducing psychological harm. Thus, women are
protective of their children and most likely gauge
disclosure decisions based on perceived child maturity
and emotional stability.
There are several plausible
explanations for these findings. The relationship
between a mother and each of her children is a very
special and unique relationship. Each child’s life
circumstances are different and this uniqueness may be a
driving force behind disclosure decisions. Women may
indeed weigh the pros and cons involved with sharing
their diagnosis with each of their children (Armistead
et al., 2001;
Black & Miles, 2002;
Serovich, 2001). Then, based on their
individual characteristics, the mother decides if
disclosure is appropriate regardless of any stigma she
experiences. Women may be more concerned about a child’s
wellbeing rather than the response or possible
devaluation and exclusion of others. For example, women
may not want their diagnosis shared with others and,
therefore, secrecy is the barrier to disclosure rather
than concern about being stigmatized by their children (Letteney
& La Porte, 2004). These factors, rather than
stigma, may also explain why mothers have told some of
their children but not all.
There may be other more pressing
societal or personal issues women experience (e.g.,
depression) that may impact disclosure to children. For
example, many women in our study were infected by their
husbands or committed partners who had been having
extramarital affairs, sexual relationships with men or
engaging in intravenous drug use. Explaining to children
the mode of infection, especially in these situations,
can be extremely difficult. In an effort to avoid such
situations, mothers may decide not to disclose.
Therefore, it is plausible that personal issues
experienced by women may impact disclosure and this
notion is worthy of further investigation.
Another plausible explanation
resides in the fact that this study included a
midwestern sample. Most studies researching disclosure
have been conducted in larger more coastal cities such
as New York City (Kirshenbaum
& Nevid, 2002;
Letteney & La Porte, 2004), New Orleans,
Louisiana (Armistead
et al., 2001) or in the southeastern USA (Black
& Miles, 2002;
Sowell et al., 1997). Women living in
smaller, non-coastal, midwestern areas may experience
the social ramifications of HIV infection differently.
That is, it is plausible that these women experience
closer ties with family that might mitigate experiences
of stigma.
In addition, interpretative caution
may be required because of the cross-sectional,
retrospective nature of this data. Due to an inherent
time delay and not being able to collect data
immediately post disclosure, women may respond
differently than when they actually disclosed their
status to their children. If this is so, the
relationship between stigma and disclosure may be
underestimated. Clearly, a better test of this
relationship would be to interview women immediately
post disclosure to ascertain their reasons and assess
the level of stigma experienced. These studies, however,
are difficult and costly to conduct.
As others have noted (Letteney
& La Porte, 2004;
Reyland et al., 2002;
Sowell et al., 1997), there remains
inconsistency in the explanations surrounding why women
choose to or choose not to disclose to their children
and there is still no definitive answer as to whether
women should disclose. The theoretical models available
have not explicitly been applied to disclosure to
children; hence a void in the literature remains. While
no one theory may be able to completely explain women’s
decision-making regarding children, a lack of
understanding leaves intervention efforts crippled.
Given that new advances in medication result in women
having opportunities to live rather healthy lives, women
have the ability to conceal their diagnosis for longer
periods of time if they so choose. Therefore, the
disclosure decisions may be a concern for many years
meaning more research, explicitly focused on children
and longitudinal in nature, needs to be conducted. What
motivating factors are in operation when women face this
task and from where do they seek guidance and support?
It is especially curious how women manage informational
boundaries between children when only some are informed.
Helping professionals involved in their care should be
sensitive to the unique relationship that a mother has
with her children and should assist women in coping with
the various forms of perceived stigma as well as the
complex and difficult process of deciding whether to
disclose to one’s children. |
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Acknowledgments
This work was funded by a grant
awarded to Julianne M. Serovich from the National
Institutes of Mental Health (R01MH62293). |
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