A Mixed-Methods Longitudinal Investigation of Mothers' Disclosure of HIV to Their Children.
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ABSTRACT:
SUBMITTER: Goodrum NM
PROVIDER: S-EPMC8384049 | biostudies-literature | 2021 Jul
REPOSITORIES: biostudies-literature
Publications
A Mixed-Methods Longitudinal Investigation of Mothers' Disclosure of HIV to Their Children.
Goodrum Nada M NM Masyn Katherine E KE Armistead Lisa P LP Avina Ivette I Schulte Marya M Marelich William W Murphy Debra A DA
Child development 20210107 4
Mothers living with HIV (MLH) must navigate disclosing their serostatus to their children, but the longitudinal impact on families remains unknown. This study examined HIV disclosure, parenting, parenting stress, and child adjustment among 174 MLH-child dyads (aged 6-14; 35% Latinx; 57% Black/African American). Quantitative data were collected over four waves spanning 15 months. Qualitative data were collected with 14 families in which disclosure had occurred. Latent change score modeling reveal ...[more]
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Project description:BACKGROUND:Peer support provided by experienced and/or trained "expert" women living with HIV has been adopted by prevention of mother-to-child transmission of HIV (PMTCT) programs across sub-Saharan Africa. While there is ample data on HIV status disclosure among non-expert women, there is little data on disclosure among such expert women, who support other women living with HIV. OBJECTIVE:This study compared HIV disclosure rates between expert and non-expert mothers living with HIV, and contextualized quantitative findings with qualitative data from expert women. METHODS:We compared survey data on HIV disclosure to male partners and family/friends from 37 expert and 100 non-expert mothers living with HIV in rural North-Central Nigeria. Four focus group discussions with expert mothers provided further context on disclosure to male partners, extended family and peers. Chi square and Fisher's exact tests were applied to quantitative data. Qualitative data were manually analyzed using a Grounded Theory approach. RESULTS:Two-thirds of the 137 participants were 21-30 years old; 89.8% were married, and 52.3% had secondary-level education. Disclosure to male partners was higher among expert (100.0%) versus non-expert mothers (85.0%), p = 0.035. Disclosure to anyone (93.1% vs 80.8%, p = 0.156), and knowledge of male partners' HIV status were similar (75.7% versus 66.7%, p = 0.324) between expert and non-expert mothers, respectively. With respect to male partners, HIV serodiscordance rates were also similar (46.4% vs 55.6%, p = 0.433). Group discussions indicated that expert mothers did not consistently disclose to their mentored clients, with community-level stigma and discrimination stated as major reasons for this non-disclosure. CONCLUSIONS:Expert mothers experience similar disclosure barriers as their non-expert peers, especially regarding disclosure outside of intimate relationships. Thus, attention to expert mothers' coping skills and disclosure status, particularly to mentored clients is important to maximize the impact of peer support in PMTCT. CLINICAL TRIALS REGISTRATION:Clinicaltrials.gov registration number NCT01936753 (retrospective), September 3, 2013.
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Project description:ObjectivesThe aim of this study was to estimate the frequency of disclosure to and testing of contacts of patients with hepatitis B virus (HBV) in Zambia.DesignWe used a convergent parallel mixed-method research design including a quantitative survey and focus group discussions with patients with HBV.SettingA university hospital in Lusaka, Zambia.Participants79 hepatitis B surface antigen (HBsAg)-positive, HIV-negative, adults (18+ years) receiving HBV care completed a quantitative survey and 32 also participated in a focus group discussion.Outcomes and analysisContacts of patients with HBV were enumerated and patient-reported disclosure, contact testing and contact HBV test results were used to develop a testing cascade. Using multivariable logistic regression, we identified factors associated with disclosure of HBV status. In focus groups, we explored how index patient knowledge and awareness of their condition shaped perspectives on contact disclosure and testing. Focus groups coding and analysis followed a thematic analysis approach.ResultsAmong 79 patients with HBV (median age 35 years; 26.6% women), the majority reported disclosure to ≥1 contact. According to the index patients' knowledge, of 776 contacts enumerated, 326 (42.1%) were disclosed to, 77 (9.9%) were tested, 67 (8.6%) received results and 8 (11.9%) were HBsAg-positive. Increased stigma score was associated with reduced disclosure. In focus groups, HBV awareness, knowledge and stigma emerged as barriers to disclosure and referral of contacts for testing. Association of HBV with HIV-related stigma was also reported as a strong barrier to contact disclosure and testing and to taking antivirals for HBV monoinfection.ConclusionsHBV contact disclosure and testing were feasible and yielded new diagnoses in Zambia. A better understanding of barriers to seeking HBV testing and treatment is needed to scale-up this important intervention in Africa.Trials registration numberNCT03158818.
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Project description:Disclosure to children living with HIV (CLHIV) about their own status is associated with positive outcomes such as treatment adherence, but prior cross-sectional studies in sub-Saharan Africa report disclosure rates of <50%. This study aims to assess pediatric disclosure over time. 548 CLHIV were followed from 2/2013-4/2018 in Johannesburg, South Africa. Cumulative incidence of disclosure was calculated with Kaplan-Meier analysis, and disclosure characteristics assessed with a Cox model. By end of follow-up, cumulative disclosure was 70.3% (95% confidence interval: 60.0-79.9). Median age at disclosure was 9 years (range: 3-13). Baseline predictors of disclosure included older child age and the child having a history of going hungry. Prior to disclosure, 98.0% of caregivers who disclosed had conversed with their child about their illness or an HIV-related topic, or their child had asked about HIV, versus 88.6% of caregivers who never disclosed. While many children did not receive disclosure during this relatively large, longitudinal study of South African CLHIV, caregivers who had not yet disclosed may have been preparing to do so by discussing their child's health or HIV generally with their child. This highlights the need for clinicians to consistently support caregivers throughout the incremental disclosure process.
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Project description:To explore parental disclosure practices and perceptions among HIV-positive parents in urban China, we conducted in-depth interviews with 29 HIV-positive parents in Beijing in 2011. The disclosure rate was low (17%), and unplanned disclosure was common. Most parents chose not to disclose because of concerns regarding their children's young age, concerns about potentially negative psychological impacts on the children, potential secondary disclosure by the children to others, and perceived stigma associated with HIV infection and the causes of such infection (e.g., homosexual behaviors). Parents considered that an appropriate disclosure should be well-planned, cautious, and a gradual process conducted in a comfortable and relaxed environment when both parents and children were calm. We concluded that it was important to (a) provide professional guidance and services about disclosure to children for HIV-positive parents in China, (b) reduce or eliminate HIV-related stigma, (c) set up support groups among HIV-positive parents, and (d) tailor disclosure strategies for different populations of various demographic and socioeconomic characteristics.
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Project description:BackgroundExisting literature mostly consider HIV disclosure as a static event and investigate its relationship with stress using a cross-sectional design. It is unclear about the dynamic changes of HIV disclosure levels (defined as the number of disclosure targets) and how stress may influence these changes. This study explored different disclosure levels using a person-centered longitudinal approach, examined whether stress could predict these disclosure levels, and investigated if this relationship differed by gender among people living with HIV (PLWH).MethodsData were derived from a prospective cohort study conducted from November 2016 to January 2018 in Guangxi, China. Four hundred forty-four PLWH were included. Participants were assessed on perceived stress, sociodemographic characteristics, and number of HIV disclosure targets at baseline, 6-month, and 12-month follow-ups. Growth mixture modeling was used to characterize disclosure levels based on the changes of disclosure target number. Multinomial logistic regression was used to predict disclosure levels with baseline stress after adjusting for covariates. The interaction effect of stress by gender was examined. Adjusted odds ratio (AOR) with its 95% confidence interval were reported to show the strength of association. RESULTS: Three levels of disclosure were characterized as "Low levels of disclosure" (Level One), "Increased levels of disclosure" (Level Two), and "High levels of disclosure" (Level Three). Accordingly, 355 (81.2%), 28 (6.4%), and 64 (12.4%) of PLWH were categorized respectively under low, increased, and high levels of disclosure. The interaction of baseline stress by gender was significant in differentiating Level One from Three (AOR = 0.85 [0.74 ~ 0.99]) while it was not significant between Level One and Two (AOR = 0.96 [0.81 ~ 1.15]). Compared to female, male PLWH with higher baseline stress had lower probability to have consistent high disclosure levels over time. PLWH who were married/cohabited had lower probability of being classified into consistent high levels of disclosure than low level (AOR = 0.43 [0.19 ~ 0.94]).ConclusionsThere was gender difference in the relationship between stress and levels of HIV disclosure. To promote HIV disclosure, gender tailored interventions should be employed to help PLWH cope with stress.
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