χ2
= 0.518 with df = 2, p = 0.77).
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.
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.
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.
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.
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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