Journal of Pediatric Psychology, Vol. 26, No. 1, 2001, pp. 11-20
© 2001 Society of Pediatric Psychology
Disclosing HIV Status: Are Mothers Telling Their Children?
1 Georgia State University, 2 University of Georgia, 3 Tulane University, 4 Louisiana State University Medical Center
All correspondence should be sent to Lisa Armistead, Department of Psychology, P.O. Box 5010, Georgia State University, Atlanta, Georgia 30303. E-mail: psylxa{at}panther.gsu.edu .
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Abstract |
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Objective: Mothers living with HIV face a complex set of child-rearing decisions, often within the context of many competing stressors. One difficult decision for HIV-infected mothers is whether to disclose their HIV status to their children. The purpose of this study is to provide information to HIV-affected families and the professionals working with them as they approach disclosure-related decisions.
Methods: Eighty-seven HIV-infected African American mothers and one of their children who was not HIV-infected were separately interviewed on two occasions. Mothers reported whether they disclosed their HIV status to the child and provided their assessment of the child's functioning. Children also completed an assessment of their functioning.
Results: Results revealed that less than one-third of mothers disclosed their HIV status to their children. Disclosure was associated with mother's income level and perceived severity of physical symptoms. In addition, children disclosed to were more often older and female. Contrary to expectation, disclosure was not related to child functioning.
Conclusions: Professionals should note the low rate of disclosure among these families. In the absence of conclusive data regarding impact on child functioning, professionals must remain aware of the complexity of disclosure-related decisions when working with HIV-affected families, particularly in terms of the family and cultural milieu within which families operate.
Key words: HIV disclosure; African American women; maternal disclosure.
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Introduction |
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As surveillance reports continue to document high AIDS rates among African American women, who now account for more than 50% of all women with AIDS (Centers for Disease Control and Prevention [CDC], 1998
), it is increasingly evident that attention
to the children of these woman is warranted
(Armistead, Klein, & Forehand,
1995). Recent studies have begun to document the vulnerability of
children of HIV-infected mothers. For example, Forehand et al.
(1998) and Forsyth, Damour,
Nagler, and Adnopoz (1996)
found that these children exhibited more emotional and behavioral problems
and, in the former study, were reported to be less cognitively and socially
competent than the children of noninfected but demographically similar
mothers. These two studies illuminate the need for examination of factors that
may increase or decrease the likelihood that children of HIV-infected mothers
will exhibit psychosocial maladjustment.
One variable that has received little attention in the empirical
psychosocial literature, but that may influence child functioning, is whether
the child has been informed of the mother's illness. Disclosure of maternal
HIV infection may be beneficial to the child of an infected mother
(Armistead & Forehand,
1995). Specifically, disclosure may provide the opportunity for
anticipatory grieving and facilitation of open communication between mother
and child about the mother's illness (Doll
& Dillon, 1997). The latter example may be particularly
important when, although not directly informed, a child is aware of the
mother's illness yet is unable to discuss his or her concerns and fears about
her illness (Zay & Roma,
1994). Additional potential benefits of disclosure include
allowing for formal or informal social support for the child and for
clarifying any misconceptions the child holds regarding contagion and
transmissability of HIV (Zay & Roma,
1994). One study has demonstrated that the children of infected
mothers hold many misconceptions and stereotypes about HIV that could be
problematic for the child (Armistead,
Summers, et al., 1999). Thus, disclosure may offer a variety of
benefits in terms of child adjustment.
However, there are also a number of conceivable costs to disclosure. Some
mothers express concern that worrying over their illness may result in poor
psychosocial adjustment on the part of the child
(Armistead & Forehand,
1995). Additionally, because of the stigma and discrimination that
continue to be associated with HIV, a child who is told about his or her
mother's illness must typically hide this information from others and, if
unable to do so, may confront cruel treatment by others
(Armistead, Klein, Forehand, & Wierson,
1997). Last, some children may have difficulty reconciling their
negative stereotypes of people who become HIV-infected with their image of the
mother as a virtuous person (Armistead,
Summers, et al., 1999). In summary, whether or not to disclose HIV
status to one's child is by no means a simple decision. Professionals working
with HIV-affected families may be called on to assist in this decision-making
process. Unfortunately, there are very few empirical resources on which these
professionals can rely in their attempts to help families with the
decision.
Only three studies present information on rates of disclosure to children.
The first, conducted with primarily African American women, reported a 43%
disclosure rate to at least one of the women's children
(Sowell et al., 1997). The
second study, conducted with an earlier assessment of the current sample,
examined disclosure to many categories of significant others (children being
one of those categories) and found a 28% disclosure rate to at least one of
the mother' children (Armistead, Morse,
Forehand, Morse, & Clark, 1999). Neither of these studies
provides any data on predictors or consequences of disclosure to children.
The one study focusing on disclosure and child functioning was conducted
with families in which the fathers with hemophilia were the HIV-infected
parent (Armistead et al.,
1997). Despite considerable differences between the sample in the
hemophilia/HIV study (i.e., primarily married Caucasian, middle class
families) and the families in this study (i.e., African American low-income
families), the hemophilia/HIV study provides relevant information.
Specifically, disclosure to the child had occurred in only 8% of the 13
African American families included in the study. Additionally, older children
and those with fathers in a more advanced stage of HIV were more likely to
have been told. No relationships were found between disclosure and child
gender or parents' educational level. Regression analyses failed to find a
relationship between disclosure and child functioning.
All of the aforementioned studies have called for more thorough
investigations examining disclosure of maternal HIV infection to children from
African American families, due to the vulnerability of the children of
infected mothers (see Forehand et al.,
1998), as well as the cultural uniqueness of the families with
regard to generational boundaries and the flow of information
(Boyd-Franklin, 1993). Thus,
this study examines disclosure to noninfected children among a sample of
African American families in which the mother is HIV-infected.
First, we provide descriptive information regarding rates of disclosure,
time between diagnosis and disclosure, and the child's reaction to disclosure.
Additionally, we examine the demographic and medical variables related to the
occurrence of disclosure. Maternal demographic characteristics (i.e., age,
income, marital status, and education), maternal illness variables (i.e., time
since diagnosis, stage of illness, and self-reported symptoms), and child
demographic characteristics (i.e., age and gender) are examined. As in the
hemophilia/HIV study (Armistead et al.,
1997), we expected that older children and children whose mothers
are more ill will more likely be aware of their mother's diagnosis. Despite
the lack of significant relationships between child gender or parent education
and disclosure in the hemophilia/HIV study, we examine these variables here
because of the cultural, socioeconomic, and family structure differences
between the two samples. As mothers are the infected parent in this study and
female children are often given family-related responsibilities at a
relatively young age when a mother is ill
(Grant & Compas, 1995), we
expected a higher rate of disclosure to female, relative to male, offspring.
No hypotheses are offered about the relationship between mother's educational
level and disclosure. There is no literature from which to generate hypotheses
regarding associations between disclosure and the mother's marital status,
income, or age. Thus, these analyses also will be exploratory.
The second purpose of this study is to examine the relationship between
disclosure and child adjustment. We consider proxies for the two broadband
categories of internalizing (i.e., anxiety and depression) and externalizing
(i.e., aggression) problems. Although significant relationships between
disclosure and these same outcome variables did not emerge in the
hemophilia/HIV study (Armistead et al.,
1997), significant relationships are expected in this study due to
the increased vulnerability (see Forehand
et al., 1998) of our sample. Thus, we expect disclosure to be
predictive of child outcome; however, due to the potential presence of both
costs and benefits of disclosure, we offer no hypotheses regarding the
direction of this effect.
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Method |
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Overview
All families in this study were participants in the Family Health Project (FHP), an ongoing investigation focusing on the psychosocial adjustment of inner-city African American women (approximately 40% of whom are HIV-infected) and their noninfected children. Assessments of the women and one of their children are conducted approximately once a year. At the first assessment, 28% of the HIV-infected mothers had disclosed to at least one of their children; however, only 18% had disclosed to the target child participating in the FHP. This precentage was viewed as too small to test the hypotheses we proposed; therefore, this study utilizes Family Health Project data from the second assessment with the mother-child dyads, including only those dyads in which the mother is HIV-infected. A comprehensive overview of the project is provided in the Family Health Project Research Group (1998
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Participants
Participants in this study were 87 women living with HIV and one each of
their noninfected children. All participants were African American and
recruited in New Orleans, Louisiana. Eligibility criteria for the participants
included the following: women had at least one biological child who was
between the ages of six and eleven at the first assessment (seven to twelve
years old for the assessment data used in this study) and not HIV-infected;
reported no intravenous drug use within the 6 months prior to the first
assessment; and had at least one CD4 count under 600. Additional demographic
information of the mothers and children is provided in
Table I.
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Participant Recruitment and Retention
All participants were recruited for the FHP mainly at the primary public
HIV clinic in the city of New Orleans (7% of participants were recruited from
the offices of private physicians). Upon visiting the HIV clinic or
physician's office, women who met the inclusion requirements were approached
by a project staff member who explained the study and confirmed eligibility.
Ninety-five percent of the women approached to participate in the first
assessment agreed to, resulting in a sample size of 103. If two or more
children in one family were eligible for participation (i.e., between 6 and 11
years old at first assessment and not HIV-infected), one child was randomly
selected for participation. Exceptions to random selection were made in cases
where choosing a particular child within a family served to balance the sample
in terms of gender and/or age. Sixteen mother-child dyads did not participate
in the second assessment (from which data from this study are drawn). Of those
16, 10 died prior to the second assessment, 2 refuses and 4 were lost to
follow-up.
Measures
Demographic Information. Demographic information (e.g., age,
income, education) was obtained from the mother during the sociodemographic
interview.
Disclosure. Information on disclosure was obtained through maternal self-report, during the sociodemographic interview. Specifically, mothers were asked whether or not they "have told anyone" of their HIV status. If so, the women then indicated whether they had told the target child of their HIV status and when the child was told. The mother was also asked to describe the child's reaction to her disclosure (i.e., "How did your child react?"). The mother's description of the child's reaction was then coded by the interviewer into one of seven categories that included rejecting, accepting, angry, fearful, disappointment, supportive, or no reaction. These seven categories were generated through the use of focus groups and pilot data during which women who had disclosed their HIV status were asked to describe their child's reaction, and those who had not disclosed were ask to describe how they expect their child to react upon disclosure. Responses that could not be coded into one of the seven categories were coded as other. There was one such response.
Maternal Health Status. HIV-infected women were identified by
their treating physician. Information regarding health status of these women
was obtained from medical charts and through self-report. Data collected from
medical charts included the date of HIV diagnosis and illness staging; the
woman's physician was responsible for assigning one of the three stages of
illness according to CDC
(1992) guidelines:
asymptomatic, symptomatic, AIDS.
The mother completed the Physical Symptoms Inventory (PSI;
Wahler, 1969), a self-report
measure of physical symptomatology. The PSI assesses the degree to which an
individual is bothered by specific somatic complaints. Each item consists of a
physical symptom on which the individual rates herself along a 6-point
Likert-type scale with endpoints of "almost never" to
"nearly every day." The PSI manual
(Wahler, 1973) reports
internal consistency values ranging from.88 to.94 and adequate test-retest
reliability. Subsequent to feedback obtained during piloting of the PSI,
directions and items were modified for increased comprehensibility. Seven
items were eliminated and four items deemed more relevant for women (e.g.,
vaginal itching, vaginal discharge) were added. Additionally, the Likert scale
was reduced to five points, retaining the original endpoints. Given these
modifications and the fact that the PSI had not been standardized with African
American women, items were subjected to a confirmatory factor analysis. Twelve
items loading at less than.40 were not included in the analyses of this study.
The alpha coefficient for the remaining items was.91. The total score on the
PSI was used as a self-report measure of physical symptomatology experienced
by the women. Scores on this measure could range from 0 to 108, with higher
scores indicating more symptoms.
Child Functioning. Standardized instruments were administered to mothers and children to assess for the presence of externalizing problems and internalizing problems.
1. Internalizing problems. Internalizing problems were assessed by mother
and child report. The mother completed the Child Behavior Checklist (CBCL;
Achenbach, 1991a), a 113-item
instrument that yields subscales representing dimensions of a child's
behavior. The items describe problem behaviors of children and are rated on a
3-point scale for the target child: 0 (Not True), 1 (Sometimes or Somewhat
True), and 2 (Very or Often True). The CBCL consists of nine subscales, as
well as global indices of internalizing and externalizing behavior problems.
For purposes of this study, the CBCL anxiety-depression subscale served as a
proxy for the child's internalizing problems. Achenbach
(1991a) reports mean
test-retest reliability of.87 for the CBCL as well as evidence for content and
criterion related validity. Samples similar to the one in this study were
included in Achenbach's (1991a)
standardization data. The alpha coefficient for the Anxiety/Depression
subscale in our sample was.81. Scores could range from 0 to 28, with higher
scores indicating more anxiety and depression.
The child completed the Children's Depression Inventory (CDI;
Kovacs, 1981) as a self-report
indicator of internalizing problems. The CDI consists of 27 items. Each item
allows the child to select among three alternatives on a scale reflecting the
degree of a particular symptom. Standardization data are available for
children ranging in age from 7 to 17, and adequate reliability and validity
data have been reported with diverse samples, including those similar to the
sample studied here (e.g., Fitzpatrick,
1993). The alpha coefficient for the current sample was.79. Scores
can range from 0 to 81, with higher scores indicating greater levels of
depression.
2. Externalizing problems. Externalizing problems were also measured by mother and child report. The CBCL aggression subscale (see standardization information above) reported by mothers served as a proxy for the child's externalizing problems. The alpha coefficient for this subscale with the present sample was.89 and scores could range from 0 to 40, with higher scores indicating more problems.
The child-completed Aggressive Behavior Subscale from the Youth Self-Report
of the CBCL (Achenbach, 1991b)
served as an indicator of externalizing problems. This instrument has
acceptable reliability and validity data
(Achenbach, 1991b); however, it
was not standardized with 6- through 11-year-old children. Therefore, we
initially conducted a confirmatory factor analysis, specifying one factor, and
retained 16 of the 19 items. The alpha coefficient was.83. Scores could range
from 0 to 32, with higher scores indicating higher levels of externalizing
problems.
Interviewers and Interviewer Training
We used two sets of interviewers, one set for the sociodemographic
interview and a second for the psychological interview. All interviewers had
extensive experience working with inner-city African American families and
were either PhD level professionals (sociologists and psychologists), social
workers, or doctoral candidates in clinical psychology. All interviewers were
trained on their respective instruments during the pilot phase of the project
with the goals of ensuring cross-interviewer reliability and enhancing
sensitivity to cultural and socioeconomic differences.
Procedure
As noted earlier, all data for this study were obtained from the second
assessment of the Family Health Project. Twelve to fourteen months after the
first assessment, mothers and children were recontacted and asked to
participate in a second assessment session. Assessments were conducted during
the school year only (i.e., not during summer or Christmas breaks) to control
for the potential impact of the child' attendance at school on the interaction
patterns between mother and child. Both the mother and child assessments were
completed in a medical setting. Taxicab service was provided for participants
without access to transportation.
The mother and child were interviewed on two occasions for each assessment. The first interview focused on sociodemographic information, while the second interview was a psychological assessment. Interview procedures for each assessment were identical. Upon arrival, informed consent/assent for each mother and child was obtained. The mother and child were then interviewed separately. During the sociodemographic interview, lasting about 60 minutes, demographic and disclosure-related information was obtained from mothers. The second interview, the psychological assessment, was conducted 2 days to 2 weeks after the first interview. In this second interview, information regarding the child's psychological functioning was obtained from the mother and child. Mothers were again interviewed separately from their child. This second interview lasted approximately 2 hours for the mothers and 1 hour for the children. Following the sociodemographic and the psychological interviews, the mother received $50 in compensation for her time and effort, and each child was given an opportunity to choose a toy (e.g., box of crayons, stickers, yo-yo).
Within each interview session, all material was orally presented to participants. For the psychosocial interview, cue cards were used as well. These cards contained the descriptors (e.g., not true, sometimes true, and often true), their corresponding numeric values (e.g., 0, 1, or 2), and pictorial representations of the descriptors (e.g., thermometers with various proportions shaded in).
Finally, a medical chart review and abstraction was completed for each mother.
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Results |
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Overview of Analyses
Descriptive statistics are presented for disclosure rates, time to disclosure, and the child's reaction to disclosure. For the examination of mother, health, and child characteristics associated with disclosure, t tests were used in the case of continuous data (i.e., mother's age, income, time since diagnosis, and physical symptoms, as well as child's age), and chisquare analyses were used for categorical data (i.e., mother's marital status, education, and illness stage, as well as child's gender).
We used multiple regression analyses to examine the relationship between disclosure and child functioning (i.e., internalizing and externalizing problems). Initially, correlational analyses between demographic/medical variables (e.g., child's age, mother's stage of illness) and the criterion variables were conducted in order to determine which demographic/medical variables to control for in the regression analyses. The necessary control variables are entered in the first block of each regression equation, and disclosure is entered in the second block.
Descriptive Statistics
The mother's HIV status had been disclosed to the target child in 30% of
the families. The mean number of months between diagnosis and disclosure to
child was 13.63 months (SD= 19.39). However, the modal time between
diagnosis and disclosure was 0 months, with 50% of mothers who disclosed to
their children doing so on or very near the day they were diagnosed. The mean
number of months between disclosure and the assessment used in this study was
27.63 months (SD = 19.75). In terms of the child's reaction to the
mother's disclosure, 30.4% of children were described as supportive, 17.4% as
accepting, 17.4% as fearful, 8.7% as disappointed, 8.7% as angry, and 4.3% as
rejecting; 13.5% were described as displaying no reaction.
Variables Associated With Disclosure
Results of the t tests and chi-square analyses are presented in
Table II. With respect to the
maternal demographic factors, a significant effect was obtained for mother's
income (t = 2.13, p <.05), indicating that disclosure was
more likely in families with lower incomes. There were no significant
differences in disclosure rates for mother's age (t =.90, p
>.05), educational level (
2 = 2.31, p >.05), or
marital status (2 = 1.93, p >.05).
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Among the variables related to the mother's illness, no significant effect
emerged for disclosure to child and time since mother's HIV diagnosis
(t =.88, p >.05) or stage of illness (2 =
1.88, p >.05). However, a significant effect did emerge for
disclosure to child and mother's self-report of symptoms (t = 2.53,
p <.01), with a higher percentage of disclosure in families where
mothers reported being more bothered by physical symptoms.
With regard to child factors, significant effects emerged for child's age
(t = 2.85, p <.01) and gender (2 = 10.68,
p <.01). As hypothesized, older children were more likely to be
disclosed to than younger children, and girls were more likely to be disclosed
to than boys.
Preliminary analyses indicated that three of the criterion variables were significantly correlated with one or more of the demographic/medical variables. Specifically, the CBCL Anxiety Depression subscale was correlated with mother's marital status (r = -.21, p <.05) and physical symptoms (r =.32, p <.01), while the CDI was correlated with mother's marital status (r = -.22, p <.05) and the child's age (r = -.28, p <.01). Additionally, the CBCL Aggression subscale was correlated with the mother's physical symptoms (r =.37, p <.01). No demographic or medical variables were significantly correlated with the YSR Aggression subscale. For each criterion variable with a significant correlation with a demographic/medical variable, the demographic/medical variable(s) was entered in the first block of the regression analyses, and disclosure was entered into the second block of the analyses. Disclosure was not significantly predictive of either mother (ß =.81, p >.05) or child (ß = -.07, p >.05) report of internalizing problems. Nor was disclosure significantly predictive of mother (ß = -.11, p >.05) or child (ß = -.07, p >.05) report of externalizing problems. Additional information regarding these analyses is presented in Table III.
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Discussion |
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The first purpose of this study was to provide descriptive information regarding disclosure to children in African American HIV-affected families. In this sample, less than one-third of the target children had been told of their mothers' HIV status. Thus, it would appear that the majority of the participating women perceive the potential costs of disclosure to their children as outweighing the potential benefits. The disclosure rate of 30%, although higher than the 8% disclosure rate found among the few African American families in the aforementioned Armistead et al. (1997
) hemophilia/HIV study,
differs from the rate of 55% for the Caucasian families in the latter study.
This discrepancy might be explained in a number of ways. The most parsimonious
explanation is that, on average, the children enrolled in this study were
younger than those in the hemophilia/HIV study (M = 9.41 and 11.0
years old, respectively). Mothers who have not disclosed their HIV status to
their children have anecdotally reported to the first author that they plan to
disclose once the children are older. Additional possible explanations for the
higher disclosure rate among Caucasian families in the hemophilia/HIV study
and the African American families in this study involve differing cultural
practices in the transmission of family information across generations
(Boyd-Franklin, 1993) and/or
the different routes of HIV transmission for the two samples (i.e., blood
transfusion versus drug-related or sex-related behaviors), which may influence
one's comfort level around disclosure. Future research should target mothers'
decision-making process and the factors they consider in this process as they
decide whether or when to disclose to their children. Interestingly, half of the mothers who told their children of their diagnosis did so within a few days of receiving their diagnosis and only 10% disclosed 1 month to 12 months after diagnosis. The remaining 40% waited a year or more. Thus, it appears that if mothers are going to disclose to school-age children, they typically either do so right away or wait a significant period of time, perhaps waiting until they are feeling more ill. Future studies should more thoroughly examine the timing of disclosure, relative to diagnosis, in terms of both child and mother functioning.
Last, with regard to descriptive data, mothers perceived children as demonstrating a variety of reactions to disclosure. About half of the children were perceived as reacting in a positive manner (i.e., supportive or accepting), and about 40% reacting with negative affect (i.e., rejecting, angry, fearful, disappointed). This information is useful to professionals working with infected parents who are making decisions about disclosure both in terms of providing the parents with information about how their children may react, as well as normalizing a particular child's reaction to parental disclosure. It is important to note, however, that these data are based on the child's immediate reaction to disclosure. Likely, the child will experience a range of emotions over time and, thus, longitudinal examination of the process of disclosure is warranted.
A number of interesting relationships between demographic/medical variables and disclosure emerged in this study. In terms of the maternal demographic variables, mothers with lower incomes were more likely to have disclosed to their children than those with higher incomes. One possible explanation for this finding is that mothers with lower incomes may have fewer options for child care, necessitating that their children accompany them to a doctor's office or clinic appointments and/or stay home with them when the mother is ill. Thus, it may be more difficult for these mothers to keep their HIV status a secret from a practical standpoint.
Though not statistically significant (perhaps due to the small number of widowed women), the varying disclosure rates across marital status categories is interesting. Specifically, widowed women had the highest rates of disclosure (50% of widowed mothers had disclosed their HIV status) as compared to women of other marital status categories (e.g., 38% of separated or divorced women and 27% of never married women disclosed their illness). Perhaps widowed women had partners who died of AIDS, and the father's passing presented an opportunity for the mother to disclose her status to her child.
Contrary to our hypotheses, neither illness staging nor time since
diagnosis was related to whether disclosure had occurred. As predicted,
however, the mother's self-report of symptoms was associated with disclosure.
The discrepant findings across indicators of maternal illness might be
explained by the results of a study conducted by Linn, Poku, Cain, Holzapfel,
and Crawford (1995). These
results indicated that perceived physical symptoms were more important than
biological markers for HIV-infected African Americans when considering
psychosocial variables, such as self-disclosure. Of primary importance, our
findings do suggest that as perceived severity of physical symptoms increases,
mothers are more likely to disclose. This may occur because mothers are less
able to hide their symptoms from others, including their children. At this
point, mothers may either choose to disclose or be persuaded to disclose as a
result of the child's curiosity regarding her health. Children who are
uncertain about their mother's health as a result of physical symptoms may be
better off knowing about the mother's diagnosis in order to provide an
opportunity for discussion of the child's fears and concerns
(Mischel, 1981). A second
explanation for the report of more physical symptoms among mothers who have
disclosed may be that these mothers believe it is important to inform their
child about their illness as further incapacitation or death approaches.
Specifically, it may be necessary to discuss alternative placements for the
child should the mother become unable to care for him or her, or the mother
may be seeking the enhanced connection that often occurs between family
members through the process of open discussion of a life-taking illness
(Brown & Powell-Cope,
1993).
Both hypotheses regarding the child variables were supported by the
results. First, as reported by Armistead et al.
(1997), children for whom
disclosure had occurred were older than those who had not been told. This
finding is also consistent with anecdotal reports of women indicating to us
that they feel it is important for a child to be old enough to understand and
cope with the knowledge that their mother is HIV-infected. In this sample, the
mean age of the group of children for which disclosure had occurred was 10
years, 3 months. Given the lack of findings regarding a negative impact of
disclosure on child functioning, it may be safe to say that children as young
as 10, and perhaps some who are younger, can bear the burden of knowing about
a mother's HIV. However, it is important to note that, if a mother decides to
tell her school-age children of her HIV diagnosis, the information should be
presented in a developmentally appropriate manner (e.g., allowing the child to
control the quantity and quality of information given by structuring the
conversation around his or her questions). Moreover, it is important to
provide assurances of the child's needs being met should the mother be
incapacitated (e.g., McCue,
1994).
The second finding in terms of child factors was that more female children
had been disclosed to than male children. As noted earlier, female children in
households where a mother is ill often assume more household responsibilities
than they had prior to the mother's illness
(Grant & Compas, 1995). As
they assume these more mature roles, their mothers may be more inclined to
share their HIV diagnosis with the daughters than with their sons.
In contrast to our predictions, disclosure was not predictive of child
functioning, as reported by either mother or child. Initially, this finding
seems surprising, given the numerous potential psychosocial sequelae (both
positive and negative) of disclosure. Two alternatives may explain these
findings. First, the positive (e.g., facilitation of open communication) and
negative (e.g., burden of secrecy) consequences of disclosure may cancel out
each other. Second, as noted in Armistead et al.'s
(1997) study focusing on
HIV-infected men with hemophilia, a number of other variables, particularly
family process variables, may override the importance of disclosure in and of
itself. Some potentially relevant variables, which should be explored further,
include the mother-child relationship, the mother's parenting skills as she
becomes more ill, and the presence of other caregivers in the home.
In addition to the strengths of this study (e.g., its focus on an understudied population, large sample size, and inclusion of both mother and child report of child functioning), several weaknesses warrant attention. Specifically, these data are cross-sectional, which is a limitation in that disclosure may be more or less important in different stages of the family's adjustment to HIV, including the time at which the mother dies. Thus, it is important for future research to examine the long-term impact of disclosure on child functioning. Additionally, although this sample is likely representative of many African American families affected by HIV, families in which the mother had used intravenous drugs within the previous 6 months were excluded. Therefore, generalization of these results to such families warrants caution.
In summary, this study offers information to professionals working with HIV-affected African American families. Rates of disclosure and its association with various medical and demographic variables are provided. Professionals might note that the rate of disclosure among these families is relatively low and, in fact, nondisclosure appears to be the norm. Mothers who have disclosed to their child tend to do so either right away or as they feel more ill, and children display a variety of reactions to mothers' disclosure. Furthermore, although one never purports to prove the null hypothesis, in this sample there is no significant relationship between maternal disclosure and child functioning. A variety of other factors (e.g., parent-child relationship) likely are more relevant to child functioning than disclosure alone. Thus, disclosure must be considered within the family and cultural milieu.
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Acknowledgments |
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This research was supported by the Centers for Disease Control and Prevention. We thank Janet Moore, Lynda Doll, and Kim S. Miller for their support.
Received February 5, 1999; revision received July 30, 1999; revision received December 28, 1999; accepted December 28, 1999
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References |
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TopAbstractIntroductionMethodResultsDiscussionReferences |
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