The Complexity of Women’s Lives: Decision-making about Maternal HIV Disclosure

HIV/AIDS has reached epidemic levels in Washington, D.C. and mothers living with HIV increasingly have to make difficult decisions about whether or not to disclose their HIV status to their children. Focus groups were conducted with a sample of women (N = 15) living in Washington, D.C. to investigate maternal decision-making about HIV disclosure, the factors that influenced disclosure, challenges to disclosure, and children’s reactions to disclosure. This was a first step towards the larger goal of developing a culturally sensitive disclosure decision-making intervention. Participants were asked to identify elements to include in such an intervention. We also quantitatively examined participants’ psychosocial outcomes of depression, perceived social support, quality of life, and parenting challenges. Our preliminary findings showed that most participants experienced intense emotional distress after receiving an HIV diagnosis and this distress prevented them from disclosing their HIV status to family members and children. Several specific parenting concerns (e.g., age and gender of child, relationship to child, and number of children) influenced their decisions to disclose. All participants reported that HIV related stigma and discrimination as significant disclosure-related challenges. Health providers were not always perceived as being able to support participants in making a decision about whether or not to disclose their HIV status to their children.     

Young Children's Reactions to Mothers’ Disclosure of Maternal HIV+ Serostatus

Little is known about the impact of maternal disclosure of HIV-positive serostatus on young children. The objective of this study was to explore this topic, utilizing in-depth qualitative interviews. Qualitative interviews were conducted with 47 mothers who had disclosed to their young, well child, and with the children. The most prevalent child response was anxiety, primarily focused on the mother's health and fear of her death. A number of children also worried about other people finding out, and seemed aware of the stigma surrounding HIV. For most children anxiety decreased over time, although for a small number it sustained and became maladaptive. The majority of children appeared to adjust well to maternal disclosure. Mothers who are planning to disclose their serostatus to their young children should be encouraged to plan for appropriate psychosocial follow-up following the disclosure, with special focus on the stigma associated with HIV.     

Regrets and Advice from Mothers who have Disclosed their HIV + Serostatus to their Young Children

Qualitative interviews were conducted with mothers (N = 47) who had disclosed their HIV status to their child. Mothers described their preparation and the process of the disclosure event, and discussed any regrets they had about disclosing or the process of disclosing. They were also asked what advice they had for other HIV-positive mothers who were trying to determine whether to disclose their serostatus to their young children. Overall, the majority of the mothers (68%) did not regret disclosing their HIV status. Regrets fell into five categories: preparation, timing, context, content, and outcomes of the disclosure event. Based on these findings, mothers who have not disclosed their serostatus to their children need assistance with behavioral practice and support in order to prepare for the process. Furthermore, follow-up support for the children may be beneficial.     

Stigma and Ostracism Associated with HIV/AIDS: Children Carrying the Secret of Their Mothers' HIV+ Serostatus

Qualitative interviews were conducted with mothers (N = 47) who had disclosed their HIV status to their children. The majority of mothers explicitly told their child not to disclose to other people that she was HIV-positive because they feared repercussions in the way of stigma and ostracism for both themselves and their child. Approximately one-fourth of the mothers identified safe people, to whom their child could discuss her serostatus, such as family members, health care providers, or therapists. The majority of the children respected their mothers' wishes; only four children disclosed to someone after being explicitly told not to do so. A significant number of children expressed concerns about their friends finding out, fearing that they would be ostracized or that it would be assumed they were also infected. In addition, the children did not want others to find out because they wanted to protect their mothers. The burden of keeping the secret of their mothers' serostatus does seem to be a stressor for some of the children.     

CLOSE RELATIONSHIPS AS SOURCES OF STRENGTH OR OBSTACLES FOR MOTHERS COPING WITH HIV

The current study explores the impact of HIV disease on the interpersonal relationships and social support experiences of mothers living with HIV. Analysis of interviews with 25 mothers with HIV focused on their perceptions of the impact of HIV on close relationships with significant others, including family of origin, children, friends, intimate partners, and parents. The results revealed the following major relationship challenges that mothers had to cope with after the discovery of their HIV-positive status: weighing reasons for and against disclosure of their HIV status, whether HIV disclosure brings relationship partners closer together, finding future caregivers for young children if one's health declines, and coordinating safer-sex practices with sexual partners, especially with the many males who are reluctant to use condoms. The study suggests the importance of understanding both the positive and negative aspects of social interactions in coping with HIV and the struggles that mothers have with the consequences of the HIV diagnosis for both themselves and their significant others.     

Clinical Supervision Dilemmas Related to Child Abuse in Wraparound Treatment

We conducted two separate, exploratory studies to evaluate the differences between the supervision of wraparound (in-home) and outpatient (office) child treatment interventions. Study one (n = 96) examined the structure and norms of supervision between groups as well as rates of general disclosure to direct supervisors. Study two (n = 116) specifically examined the frequency of child abuse and neglect encountered in each intervention setting, and the level of disclosure in supervision of these mandatory reporting events. Findings from the first study suggest that wraparound clinicians received significantly less individual supervision and colleague consultation than their office-based counterparts. Additionally, wraparound clinicians were significantly more likely to withhold information about client cases from their direct supervisors. In the second study, wraparound clinicians endorsed significant increases for observed child abuse, observed child neglect, and verbally reported child neglect compared to their office-based counterparts. In regards to mandatory reporting issues with children, wraparound clinicians were found to be significantly less likely to disclose issues pertaining to child neglect to their direct supervisors than office-based clinicians. Our studies show preliminary evidence for a needed increase of individual supervision in wraparound practice, in addition to a greater focus on clinician disclosures related to incidents of child abuse and neglect.     

Effects of day care and maternal teaching on child educability

Two groups of matched mother-child pairs, a day care sample (N = 38) and a home reared sample (N = 38) participated in a study testing mothers for degree of decentred teaching and children for degree of decentred educability. The children were seven years old. Mother and child were tested in separate settings, thus preventing interdependency among scores. The study used a matched-pair design with control of five background variables; age of the child, mother's educational level, mother's occupational status, family SES level, and type of family. The results showed strong positive effects of both day care experience and maternal teaching on child educability. Day care experience improved the educability of children independent of the mother's teaching strategy and gender of the child.     

HIV Disease Impact on Mothers: What They Miss During Their Children’s Developmental Years

Adjusting to chronic illness is very complicated for families with children, as they are already faced with the challenge of development and childrearing. In this study, qualitative interviews were conducted with HIV positive mothers on a number of issues related to being an HIV positive mother raising young children. One topic of the interview was whether or not they felt that HIV had caused them to miss activities with their children while the children were growing up, what types of activities they had missed, the age of the child for each example, and how HIV had led to missing these activities. Interviews were conducted in 2008 with a random sample of 57 mothers being followed in a longitudinal assessment study. All study participants were English or Spanish speaking. Mean age was 44.1 (SD = 5.6) years; 47% were Latina; 35% African American; 11% White; and 7% other race. About 60% of the mothers disclosed that their HIV status had caused them to miss out on activities with their children while their children were growing up, ranging from daily care activities to major school and extra-curricular activities. Some mothers missed significant amounts of time with their children due to hospitalizations. In some cases mothers felt forced into a choice between mothering ability and their own health, including adherence to medications. Implications for the mothers and the children are discussed.     

Self-efficacy and disclosure of HIV-positive serostatus to sex partners.

HIV-positive persons face significant challenges to disclosing their HIV serostatus, and failure to disclose can place their sex partners at risk. The current study examined HIV serostatus disclosure in 266 sexually active HIV-positive persons recruited from the community. Results showed that 41% had not disclosed their HIV serostatus to sex partners. Men who had not disclosed to partners indicated lower rates of condom use during anal intercourse and scored significantly lower on a measure of self-efficacy for condom use compared to individuals who had disclosed. Emotional distress was also greatest among persons who had not recently disclosed. Having not disclosed to sex partners was closely associated with lower self-efficacy for disclosing, with women who had not disclosed reporting the lowest disclosure self-efficacy. As people living with HIV-AIDS are encouraged to disclose their HIV status, interventions are needed to facilitate disclosure decision making.     

Disclosure of HIV Status Among Female Youth With HIV

Minority female youth are significantly affected by the HIV epidemic. The purpose of this pilot study was to explore sexual behavior practices, disclosure of HIV status, attitudes about disclosure, and knowledge of HIV disclosure laws among female youth with HIV (YWH). Findings suggest that the majority of YWH studied have been sexually active since their HIV diagnosis, although the nature and extent of sexual activity varied. Rates of nondisclosure to sexual partners varied based on the type of question asked, but at least some of the YWH in this sample reported sexual activity with a partner who was unaware of the participant’s HIV status. YWH appear to be more likely to disclose before, as opposed to after, sexual activity. Although most YWH believe disclosure to sexual partners is important for a variety of reasons, many reasons exist for nondisclosure, including fear of rejection and limited communication skills. The majority of YWH in this sample were aware of the potential legal ramifications of nondisclosure although fear of legal repercussions was not the most important factor related to disclosure. These findings favor the implementation of HIV disclosure interventions over the enactment of HIV criminalization laws as a strategy for reducing HIV transmission.     

Parentification and Maternal HIV Infection: Beneficial Role or Pathological Burden?

Parentification, along with parenting and child adjustment, were examined in 23 9-through 16-year-old youth from families affected by maternal HIV infection and 20 same-age peers whose mothers were not infected. Children whose mothers were HIV-positive reported to more often engage in parental role behaviors, relative to children of HIV-negative mothers. This difference remained even after controlling for the effects of current drug use, number of adults per child in the household, and marital status. Findings revealed a beneficial relationship between parentification and both child adjustment and parenting, particularly among families affected by maternal HIV infection. When relationships were examined separately by HIV status, the pattern of results suggested that parentification, which involves increased emotional closeness, rather than role-related tasks, which may involve increased responsibility of household maintenance, seems to foster an association with concurrent positive parenting and child adjustment among families coping with HIV/AIDS. Directions for future research, including the need for methodological advances in the field are discussed.     

Older Adolescents’ Self-Determined Motivations to Disclose Their HIV Status

Disclosure of HIV status is an important topic for youth living with HIV/AIDS, yet theoretical frameworks for understanding HIV disclosure motivations have been poorly applied. Self-determination theory (SDT) proposes that people are at optimal functioning when they are engaging in activities that are interesting and enlivening. This study utilized SDT to understand young adults’ motivations to disclose their HIV status. Interviews and observations were conducted with nine youth aged 17–19 and two adult staff. Results indicate that SDT is useful for understanding types of motivation (i.e., amotivation, controlled, and autonomous motivation) to disclose. Amotivation was the most common type of motivation, and came from two recursive sources: fear of stigma and previous experiences of others disclosing without their consent. Controlled motivation to disclose occurred when participants were motivated to disclose because of reasons related to other people, rather than internal or personal reasons, and included the reasons of wanting to gain a closer relationship, reciprocate a shared secret, for psychological or emotional relief, and for attention. Autonomous motivation included two themes: the life perspective that “Having HIV is just part of who I am,” and valuing educating others because education was perceived as important and beneficial to others. This study extends SDT into the domain of HIV disclosure in older adolescents. People providing guidance and support to older adolescents with HIV/AIDS can use SDT to understand different motivations to disclose.     

青少年自我表露和自我隐瞒的特点及其与主观幸福感的关系

采用问卷调查的方法,对691名初一至大四学生的自我表露和自我隐瞒特点及其与主观幸福感的关系进行了研究。结果表明:(1)女生对父亲、母亲以及最好同性朋友的表露高于男生,自我隐瞒则低于男生。(2)初中生对母亲的表露高于高中生;中学生对最好同性朋友的表露低于大学生;青少年对最好异性朋友的表露随年级增长而提高。(3)独生子女对最好同性朋友和最好异性朋友的表露显著低于非独生子女。(4)青少年自我表露时对目标人的偏爱也存在性别和年级差异。(5)多元回归分析表明,对父母的表露能正向预测生活满意度;对父亲和最好异性朋友的表露能正向预测正性情感;自我隐瞒和对父亲的表露分别能正向和负向预测负性情感。     

That's a boy's toy: gender-typed knowledge in toddlers as a function of mother's marital status

A child who is highly gender schematic readily uses gender when processing new information. In the current study, we examined whether and how family structure predicts a child's level of gender-typed knowledge (as assessed by a gender-stereotype sorting task) once the category of gender is in place (as assessed by a gender-labeling task). It was predicted that children from more "traditional" family structures (married mothers) would have more gender-typed knowledge compared to children from less traditional families (unmarried mothers). Moreover, we explored if this relationship would be related to, at least in part, the greater frequency of androgynous behaviors (i.e., both masculine and feminine household activities) an unmarried mother performs. Twenty-eight children (age 2 to 3) were tested at local childcare centers. The mother of each child reported her marital status as well as how often she engaged in stereotypically masculine and feminine behaviors. As expected, mothers' marital status was associated with children's level of gender-typed knowledge, such that children with unmarried mothers had less gender-typed knowledge, in part due to the unmarried mother's greater frequency of androgynous behaviors. Implications for children's acquisition of gender-related stereotypes and the possible benefit of having mothers model both masculine and feminine behaviors are discussed.     

Caregivers's Stress Secondary to Raising Young Children with HIV Infection: A Preliminary Investigation

This study examined the impact of caring for a child with HIV infection on biological mothers (also infected with HIV), familial caregivers, and foster mothers. Levels of reported parenting stress, emotional functioning, the impact of the child's illness, and coping strategies utilized were compared. Participants were 35 female caregivers of young children (birth to 5 years) with HIV infection. Demographic variables reflected group differences: biological mothers were younger, foster mothers had greater monthly income, and children who were living with relatives were older. Group differences were noted with regards to parent related stress, anxiety, and depression with foster mothers reporting lower levels. The types of coping strategies utilized were generally similar across groups. Results suggest that young, biological caregivers of children with HIV infection may benefit from careful assessment with regard to their need for psychological intervention.     

Communication Deviances and Clarity Among the Mothers of Normally Achieving and Learning-Disabled Boys.

The main purpose of the study was to reexamine the association between maternal communication deviances and learning disabilities in children. In this study, we adapted and extended the procedure used b Ditton, Green, and Singer (1987). A two-part experimental task was used: one in which the child could not request any clarification of mother's insruction, and another in which the mother and child could communicate. Both communication deviances and the clarity of mother's communication were analyzed. The subjects were 60 mother-child paires in which half of the children had learning disabilities and the other haalf were normally achieving children matched for age and parents' SES. The dyads were vedetaped in a laboratory setting. The mothers o f learning-disabled (LD) children were found to give less exact instructions and to present more ambiguous messages to the child than the mothers of non-LD children.     

A model of caregiver paediatric HIV disclosure decision-making

Many of the over 3 million HIV-positive children will only be told of their status as adolescents. Knowing one’s status may increase treatment adherence, reduce onward HIV transmission, increase trust in caregivers and maximise available support. Yet deciding whether, what, how and when to tell HIV-positive children about their condition is challenging for caregivers. We systematically review HIV disclosure theories before presenting a process model of caregiver paediatric HIV disclosure decision-making. The model, consisting of both a pre-intention and a post-intention stage, integrates individual and contextual determinants. It aims to be situationally specific, broadly applicable and consistent with the empirical literature. Research and practice implications are discussed.     

Maternal Employment and Family Socioeconomic Status: Unique Relations to Maternal Stress,Parenting Beliefs,and Preschoolers’ Adjustment in Taiwanese Families

With the rapid increase in women’s labor force participation in Asia, a greater understanding of the impact of maternal employment on parenting and child development in Asia is much needed. The present study examined the concurrent relations between maternal employment status and family characteristics (e.g., socioeconomic status/SES, family structure) in Taiwanese families, and the unique relations of maternal employment and family SES to maternal stress, parenting beliefs, and preschoolers’ socioemotional adjustment. In a school-based sample of 511 preschoolers (age range?=?4–6 years, 52.9% girls), their mothers, and teachers in Taipei and Taitung, mothers reported their employment status, family characteristics, perceived stress and parenting beliefs. Mothers and teachers rated preschoolers’ adjustment. Results showed that compared to unemployed mothers in Taiwan, employed mothers were more likely to come from families with higher SES and fewer children, and nuclear (vs. extended) families. Structural equation modeling was used to test the hypothesized model. Mothers from lower-SES families reported higher stress and higher endorsement of coercive parenting, and lower endorsement of authoritative parenting than mothers from higher-SES families. Controlling for SES, employed mothers endorsed higher coercive parenting than unemployed mothers. Mothers’ endorsement of authoritative parenting was associated with better child adjustment by mothers’ (but not teachers’) reports, whereas maternal stress and coercive parenting were associated with poorer child adjustment (by mothers’ reports only). In sum, maternal employment was intricately associated with family SES in Taiwanese families, and the two contextual factors shape parenting and child adjustment in different processes.     

Self-disclosure of HIV infection: preliminary results from a sample of Hispanic men.

We examined self-disclosure of HIV infection among 101 seropositive Hispanic men residing in Los Angeles. Results indicated that disclosure was highly selective and presumably influenced by the social, psychological, and material consequences of informing others about one's medical condition. Subjects tended to inform significant others such as parents, friends, and lovers than less significant others such as employers, landlords, and religious leaders. There was a relatively high rate of disclosure (75%) to doctors/dentists who were not treating subjects for HIV infection. Gay and bisexual subjects (89% of the sample) were more inclined to disclose their HIV serostatus to homosexual or bisexual others than to heterosexuals and to inform those who were aware of their sexual orientation. Disclosure increased with severity of disease independently of length of time since testing seropositive. Self-rated negative changes in appearance correlated with disclosure to less significant others. The role of cultural attitudes and values in self-disclosure of HIV infection is discussed.