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. Author manuscript; available in PMC: 2025 Jan 1.
Published in final edited form as: J Assoc Nurses AIDS Care. 2023 Nov 22;35(1):17–26. doi: 10.1097/JNC.0000000000000442

The Association of Emotional Support, HIV Stigma, and Home Environment with Disclosure Efficacy and Perceived Disclosure Outcomes in Young People Living with HIV in Zambia

Rainier Masa 1, Mathias Zimba 2, Gilbert Zimba 3, Graham Zulu 4, Joseph Zulu 5, Don Operario 6
PMCID: PMC10842355  NIHMSID: NIHMS1941971  PMID: 37994517

Abstract

This study examined the association of various forms of social support, attitudes toward living at home, and HIV stigma experiences with HIV self-disclosure efficacy and perceived negative disclosure outcomes. We analyzed cross-sectional data from 120 young people with HIV (YPWH) aged 18 to 21 years receiving outpatient care in Eastern Province, Zambia. Perceived negative disclosure outcomes and disclosure self-efficacy were measured using an adapted version of the Adolescent HIV Disclosure Cognitions and Affect Scale. Explanatory variables included parental or caregiver support, emotional support, instrumental support, HIV stigma experiences, and attitudes toward living at home. Findings suggest that YPWH’s confidence in their ability to self-disclose their HIV status and their assessment of negative outcomes associated with HIV disclosure are influenced by emotional support, experiences of HIV stigma, and the quality of the home environment.

Keywords: cross-sectional study, youth, disclosure, self-efficacy, social support, Zambia

Successful scale-up of antiretroviral treatment (ART) programs has increased the number of young people with HIV (YPWH) with an undetectable HIV viral load, making them healthy and preventing HIV transmission (Calabrese & Mayer, 2019; Hargreaves et al., 2016). However, YPWH remain less likely to receive treatment and achieve virologic suppression than adults with HIV (Adejumo et al., 2015). For treatment-experienced and treatment-naïve YPWH, disclosure of their HIV status is crucial for HIV and AIDS prevention and treatment efforts (Gabbidon et al., 2020). Rates of HIV self-disclosure, defined as the independent decision of a person to openly discuss their serostatus with a person or persons of their choosing, among young people with HIV (YPWH) vary based on the definition of disclosure occurrence (e.g., “ever” disclosing serostatus versus disclosure over the last 30 days), HIV acquisition method (e.g., perinatally acquired versus behaviorally acquired), and targets of disclosure (e.g., family, friends, romantic or sexual partners) (Gabbidon et al., 2020). Although studies have estimated self-disclosure rates among YPWH as high as 90% (Odiachi, 2017), studies in sub-Saharan Africa have reported self-disclosure rates among YPWH ranging from 40% to 80% (Mugo et al., 2021; Petersen et al., 2010). In Zambia, self-disclosure rates among people with HIV aged 15–49 years range from 7% to 72% (Bond, 2010; Doat et al., 2019). Data on self-disclosure rates among YPWH in Zambia remain limited due to the lack of disaggregation of self-disclosure rates by age groups.

HIV self-disclosure is particularly difficult in adolescence and young adulthood when young people are most sensitive to rejection and exclusion (Vijayakumar & Pfeifer, 2020). The disclosure process model (DPM) provides a theoretical framework for understanding how young people decide whether to disclose and their potential impacts (Chaudoir et al., 2011). DPM postulates that YPWH’s purpose for disclosure is vital to understanding the disclosure process and its outcomes. YPWH may pursue disclosure of their serostatus to achieve desirable outcomes, such as building stronger relationships and obtaining emotional support. At the same time, YPWH may pursue nondisclosure (or delay of disclosure) to avoid unfavorable outcomes, such as conflict and rejection. The formation of these antecedent goals may be shaped by YPWH’s perception of disclosure outcomes (favorable or unfavorable), which may affect their perceived efficacy to self-disclose their serostatus (Chaudoir & Fisher, 2010).

YPWH commonly cite HIV stigma as a major barrier to disclosure (Harper et al., 2014). HIV stigma may heighten YPWH’s fear of negative outcomes, such as abandonment, rejection, isolation, and verbal and physical abuse, which have been reported as barriers to self-disclosure among Zambians living with HIV (Mburu et al., 2014). YPWH’s social support system may be another critical factor in their decisions to disclose (Denison et al., 2008). As self-disclosure is an ongoing interpersonal process occurring throughout their lifetime, social support may affect YPWH’s perception of the positive and negative impacts of disclosing their HIV status and their confidence in their ability to self-disclose (Lockwood et al., 2019). The presence of social support may increase YPWH’s confidence in how they deal with disclosure reactions and help them find the right words to say. Prior studies in Zambia have identified that emotional, logistical, and psychosocial support from family members and friends helps people living with HIV cope with stigma and discrimination and encourages HIV testing, disclosure, and ART adherence (Denison et al., 2008; Mburu et al., 2014). Evidence also suggests that self-disclosure among YPWH in Zambia is common to family and close friends (Denison et al., 2008). However, evidence linking different forms of social support and home environment to disclosure beliefs and efficacy among YPWH in low-resource settings remains scarce.

Research is needed to validate whether HIV stigma experiences (e.g., internalized, perceived, and enacted) affect disclosure concerns among YPWH and to examine what form of social support influences the disclosure process among YPWH. The current study was conceptualized to address evidence gaps. We simultaneously examined (1) the association of different forms of social support, (2) YPWH’s perception of their home environment, and (3) HIV stigma experiences with disclosure efficacy and perceived negative disclosure outcomes in a sample of YPWH receiving outpatient care at two health facilities in Eastern Province, Zambia. We examined these relationships to determine whether interventions are needed to improve and increase disclosure beliefs and self-efficacy among YPWH and to identify malleable factors that can be targeted to ensure young people are prepared for and supported pre- and post-disclosure events.

Methods

Design

The study used cross-sectional data collected from 120 YPWH. YPWH in this study were participants of Umwini (or skills in Chewa), a combined microeconomic and social-emotional skills feasibility study. The intervention, designed to improve HIV treatment adherence, was a 10-week program that combined socioemotional and financial skills training for YPWH. Through participatory learning sessions, Umwini aimed to enhance critical life skills of YPWH and encourage accumulation of financial resources to buffer against stress and shocks. Topics included stigma, discrimination, disclosure, peer pressure, and personal safety. YPWH also received a savings account with a cash incentive (valued at 20 USD) to stimulate saving.

Protection of Human Participants

Institutional review boards at the University of North Carolina at Chapel Hill and the University of Zambia, and the National Health Research Authority in Zambia reviewed and approved the study protocol (UNC IRB Study # 17–3329 and UNZA Reference 008-01-18). These approvals were obtained before recruitment, data collection, and other study-related activities. Youth were provided information about the study, including all research activities, benefits, risks, and protections against risk (e.g., access to counseling or mental health support), and their right to privacy. They were also assured of the confidentiality of their information and study data. To ensure voluntary participation, participants were allowed to take more time to decide, and oral consent was sought if necessary. Voluntarily signed informed consent was obtained from all participants, and study materials were provided in English, Chewa, and Tumbuka to accommodate participants’ language preferences.

Participants and Study Setting

To be eligible for the study, participants had to be between 18 and 21 years of age, aware of their HIV positive status, and receiving outpatient HIV treatment at one of two comparable hospitals (Chipata Central or Lundazi District) in Zambia’s Eastern Province. Located 180 kilometers apart, these hospitals were selected based on the accessibility and availability of HIV care services, including antiretroviral therapy (ART) and support services for youth living with HIV and their families. We obtained permission from the district health directors through the HIV and AIDS coordinators to recruit 50–60 participants per hospital. Prior to recruitment, youth provided their permission to be included in the ART enrollment list of eligible participants. Project staff used the enrollment list to purposively select youth who met the eligibility criteria and met with prospective participants privately at the hospitals to explain the study and obtain consent.

The research occurred in Chipata and Lundazi districts in Eastern Province, Zambia. The project settings were chosen due to their proximity to the community-based implementing partner. In 2021, HIV prevalence rates in the country were higher among young females than young males. HIV positivity rates among youth aged 20–24 years were 5.9 for females and 1.8 for males, though HIV positivity rates in Eastern Province were lower than the national average. Eastern Province had an estimated HIV prevalence of 9.2%, compared to country prevalence of 11%, among adults aged 15+ years (Zambia Statistics Agency (ZSA) & Zambia Ministry of Health, 2022).

Data Collection

Trained local interviewers collected data between August 2018 and March 2019 using a survey questionnaire developed by the research team. The questionnaire included participants’ demographic characteristics, social support, experiences of HIV stigma and discrimination, disclosure events, attitudes toward disclosure and disclosure efficacy, and adherence to HIV treatment and care. These items were adapted from Zambia’s Demographic and Health Survey (ZSA et al., 2020), our previous research with people living with HIV in Eastern Province (Masa et al., 2018), and validated measures of key study constructs (e.g., stigma and discrimination, disclosure, and treatment adherence). The questionnaire was translated into Tumbuka and Chewa. All interviewers were proficient in English, Chewa, and Tumbuka. Interviews were conducted individually in a private room inside the local office of RFDP or the hospital.

Measures

HIV self-disclosure efficacy and perceived negative disclosure outcomes.

Our outcome variables were measured using an adaptation of the Adolescent HIV Disclosure Cognitions and Affect Scale (Evangeli, 2017). Consistent with the scale’s original validation and our factor analysis, we used two subscales of HIV disclosure as our outcome variables: perceived negative disclosure outcomes and disclosure efficacy. Perceived negative disclosure outcomes (α = 0.78) referred to negative attitudes and feelings that young people living with HIV may believe to be preventing them from telling others about their status. This subscale comprised four items with 4-point response options (strongly disagree/disagree/agree/strongly agree). Example questions included “I am worried they will tell others” and “People will think negatively about my family.” Higher scores indicated higher perceived negative outcomes associated with disclosing one’s HIV status. Perceived disclosure self-efficacy (α = 0.93) assessed YPWH’s confidence that they could disclose their HIV-positive status and was measured using a 5-item, 4-point Likert type scale (strongly disagree/ disagree /agree /strongly agree). Example questions included “I am confident that I can deal with how others respond if I share my HIV status with them” and “I am confident that I can find the right words to say if I share my HIV status with others.” Higher scores indicated higher levels of perceived disclosure self-efficacy.

HIV stigma experiences.

Stigma experiences refer to internalized, enacted, and perceived stigmas (Earnshaw & Chaudoir, 2009; Quinn & Chaudoir, 2009). Stigma experiences were measured using the HIV and AIDS Stigma Instrument (Holzemer et al., 2007) and an 8-item short version of the HIV Stigma Scale-40 (Wiklander et al., 2013). Response to each scale item was summed to create stigma experience scores. Internalized stigma, defined as YPWH’s acceptance and adoption of negative societal perceptions about people living with HIV, was measured with a 5-item (α = 0.81) negative self-perception scale that asked YPWH how often in the past three months they experienced negative thoughts about themselves due to their HIV status, such as feeling worthless or ashamed (Holzemer et al., 2007). Enacted stigma, defined as the experience of discrimination because of HIV-positive status, was assessed using an 8-item (α = 0.80) verbal abuse scale that asked YPWH how often in the past three months they experienced different types of discrimination, such as being insulted, being called bad names, or hearing offensive songs when passing by (Holzemer et al., 2007). Perceived stigma was quantified using a 3-item (α = 0.73) public attitude toward HIV scale that asked YPWH about their level of agreement or disagreement that the public holds stigmatizing beliefs about HIV and people living with HIV (Wiklander et al., 2013). Higher scores on the internalized and enacted stigma scales indicate the frequent occurrence of the stigmatizing experience, whereas higher scores on the perceived stigma scale indicate higher levels of agreement that the public holds stigmatizing beliefs about HIV and people living with HIV.

Social support.

We defined social support as a young person’s perceptions of general support or specific supportive behaviors from people in their social network.(Malecki et al., 2018) Three forms of social support were measured: parental or caregiver social support, emotional support, and instrumental support. Parental or caregiver social support (α = 0.87) measured youth’s relationship with their parents or primary caregiver. This 8-item, 4-point Likert scale was adapted from the parental support subscale of the Child and Adolescent Social Support Scale (Malecki et al., 2018). Higher scores indicated lower levels of parental or primary caregiver social support. Emotional support (α = 0.62) referred to the youth’s assessment of how helpful each person was when they talked to them about a personal problem: parents, siblings, grandparents/other relatives, their group of close friends, and people at school or work. Instrumental support (α = 0.73) referred to the youth’s assessment of how helpful (not at all/somewhat/a great deal) each of the following people was when they needed money and other material things: their parents, siblings, grandparents/other relatives, their group of close friends, and people at school or work when youth needed money and other things. For emotional and instrumental support, each item was measured with a 3-point Likert-type scale (not at all, somewhat, a great deal). Higher scores indicated higher levels of emotional or instrumental support.

Home environment.

Youth’s attitudes toward living at home were used as an indicator of home environment. The home environment was measured using a 6-item (α = .79) Likert scale that assessed the YPWH’s level of agreement or disagreement with positive or negative assessments of their family, home environment, and relationship with family members. The total attitude toward living-at-home scale score was obtained by summing the responses to each item (Amato, 2000). Higher scores indicate positive views about living with their family and their home.

Covariates.

The study also considered several covariates that could influence HIV self-disclosure, stigma, and health outcomes, including current school attendance, recent employment, and geographic residence (Gabbidon et al., 2020; MacLean & Wetherall, 2021).

Analysis

Our analyses included bivariable and multivariable tests that examined the association of HIV self-disclosure efficacy and perceived negative disclosure outcomes with three types of social support, three HIV stigma experiences, and the home environment. We used linear regression with the ordinary least squares method to analyze the association between our key explanatory variables and continuous dependent variables. Multivariable results were based on 100 multiply imputed datasets. Our analysis used multiple imputation (MI) to address missing data issues. MI was conducted following best practices in the literature, including identifying missing data patterns, performing diagnostic tests (using midiagplots in Stata) by comparing the distributions of the observed, completed, and imputed values, and reimputing to correct discrepancy in the distribution of observed and imputed values (Eddings & Marchenko, 2012; Jakobsen et al., 2017; Johnson & Young, 2011). The following variables had missing data: disclosure efficacy (4%), perceived negative disclosure (9%), enacted stigma (8%), internalized stigma (6%), perceived stigma (6%), home environment (7%), parental or caregiver social support (4%), instrumental support (26%), and emotional support (28%). We used the chained equations approach to create MI datasets (White et al., 2011), predictive mean matching for continuous variables with nonnormal distributions (Eddings & Marchenko, 2012), and regression with augmented data to address perfect prediction in MI of categorical variables (White et al., 2010). Our primary MI model was created with 100 imputed data sets to improve statistical power and accuracy. Our imputation model also included auxiliary variables to increase the plausibility of the MAR assumption (Enders, 2010; Sterne et al., 2009). Two multivariable models were estimated using MI datasets for each dependent variable. All tests were two-tailed, with the significance level at p ≤ .05. All analyses were conducted using Stata 17.

Results

Sample Characteristics and Bivariable Results

Table 1 displays the characteristics of YPWH in the study and the results of the bivariable tests. The sample comprised 63% females with an average age of 19 years. Sixty-two percent of YPWH in the study were attending school (62%) at the time of data collection, while 22% reported working in the last 30 days. A majority of youth (55%) were from Chipata. Regarding the home environment, the youth held a positive perception, illustrated by their high scores on the attitudes toward living at home scale. On average, youth reported lower internalized and enacted stigma levels, with mean scores nearly two points above the minimum possible score, than perceived stigma, with a mean score twice the minimum possible score. YPWH generally described their parents or primary caregiver as supportive. Our sample of YPWH also described their parents, siblings, grandparents, other relatives, close friends, and people at school or workplace as helpful when youth talk to them about personal problems and when they need money or other material resources. Observed mean scores for emotional and instrumental supports were higher than the possible mean score for each type of social support. The average self-disclosure efficacy score was above the possible mean score, whereas the average perceived negative disclosure outcomes score was below the possible mean score. On average, youth felt confident about their ability to self-disclose their HIV status and did not perceive high levels of negative outcomes associated with self-disclosure.

Table 1.

Sample characteristics and bivariable results1

Variables
n 		% or M (SD) Range Self-disclosure efficacy (β) Perceived negative disclosure outcomes (β)
Disclosure
  Self-disclosure efficacy 103 14.60 (3.60) 5–20
  Perceived negative disclosure outcomes 97 6.05 (2.07) 4–16
HIV stigma experiences
 Perceived stigma 101 6.06 (2.26) 3–12 −0.51** 0.07
 Internalized stigma 101 6.68 (2.47) 5–20 −0.67*** 0.23*
 Enacted stigma 98 9.39 (2.60) 8–32 −0.29* 0.34***
Social Support
  Parents or primary caregiver 103 12.86 (3.58) 8–32 −0.49*** −0.04
  Emotional support 77 10.60 (2.75) 5–15 0.46** −0.13
  Instrumental support 79 10.11 (2.86) 5–15 0.57*** −0.08
Attitudes toward living at home 99 20.14 (3.10) 6–24 0.66*** −0.05
Age (in years) 101 19.50 (3.25) 0.08 −0.01
Gender 103 1.55* 0.07
 Female‡ 63.2%
 Male 36.8%
Geographic residence 103 −0.50 −0.93*
 Chipata District‡ 55.1%
 Lundazi District 44.9%
Currently in school 103 0.24 0.55
 No‡ 37.7%
 Yes 62.3%
Worked in the last 30 days 103 −0.16 −0.79
 No‡ 78.1%
 Yes 21.9%
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Note. % = categorical variables; M=mean, T=range, and SD=standard deviation for continuous variables. β = simple linear regression coefficient.

1

Bivariable results were based on complete case analysis.

‡

= reference group.

Table 1 also presents bivariable results based on complete case analysis. Perceived, internalized, and enacted HIV stigmas were significantly associated with disclosure efficacy. All three forms of social support were also significantly associated with disclosure efficacy. In addition to geographic residence, internalized and enacted stigma were significantly associated with perceived negative disclosure outcomes.

Multivariable Results

Our analyses identified a significant association of various types of support, home environment, and stigma experiences with disclosure process outcomes. First, higher levels of emotional support were associated with lower levels of perceived negative disclosure outcomes (β = −0.23, p = .035). Second, a better home environment as perceived by youth was associated with higher levels of perceived disclosure self-efficacy (β = 0.37, p = .011). Third, HIV stigma experiences were predictive of unfavorable outcomes. Internalized stigma was negatively associated with disclosure efficacy (β = −0.44, p = .003), whereas enacted HIV stigma experience was positively associated with perceived negative disclosure outcomes (β = 0.36, p < .001). Table 2 presents the complete multivariable results, including the 95% confidence intervals.

Table 2.

Multivariable regression results of the association between different HIV stigma experiences, social support, and disclosure


Variables 		Self-disclosure efficacy Perceived negative disclosure outcomes
β 95% CI β 95% CI
HIV stigma experiences
  Perceived −0.14 −0.44, 0.17 −0.04 −0.27, 0.19
  Internalized −0.44** −0.72, −0.15 0.14 −0.04, 0.32
  Enacted −0.05 −0.30, 0.19 0.36*** 0.17, 0.56
Social support
  Parents or primary caregiver −0.19 −0.41, 0.03 −0.08 −0.26, 0.10
  Emotional support 0.11 −0.20, 0.43 −0.23* −0.45, −0.02
  Instrumental support 0.14 −0.19, 0.46 0.18 −0.07, 0.44
Attitudes toward living at home 0.37* 0.08, 0.65 0.01 −0.19, 0.20
Covariates
  Geographic residence (†= Chipata) 0.09 −1.02, 1.19 −0.90* −1.78, −0.02
  Currently in school (†= no) −0.92 −2.14, 0.30 0.55 −0.44, 1.53
  Worked in the last 30 days (†= no) −0.82 −2.24, 0.61 −0.25 −1.06, 0.55
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Note. β = regression coefficient, CI = confidence intervals.

*

p < .05,

**

p < .01,

***

p < .001.

†

= reference group.

Discussion

Study results suggest that youth’s confidence in their ability to self-disclose their HIV status and their assessment of negative outcomes associated with the disclosure process are influenced by emotional support, experiences of HIV stigma, and the quality of the home environment. YPWH, who reported that the emotional support they received from their social network (i.e., parents, siblings, other relatives, close friends, and people at school or work) was helpful, did not perceive HIV self-disclosure as predominantly resulting in adverse outcomes. This finding also underscores the primacy of emotional support (compared to instrumental support and parental or caregiver social support) in the disclosure process among YPWH, especially during a developmental period when young people transition from parental reliance to independence as young adults.

In addition to parents, other sources of emotional support may influence YPWH’s decisions about whether to disclose or not. In our study, other family members (i.e., siblings, grandparents, and other relatives), close friends, and peer support groups at local health facilities were considered sources of emotional support. Additional sources of emotional support are important as reliance on parental figures and information sharing with parents may decrease during young adolescence into young adulthood (Nelson et al., 2016). Further, in Zambian culture, relatives (e.g.,siblings, grandparents, aunts, and uncles) are expected to help care for family members. The responsibility for social care presents opportunities for youth to receive emotional support or a sense of belonging from their siblings, relatives, and community members.

The positive association between home environment and perceived self-disclosure efficacy further highlights the critical role of emotional support. Youth who reported that their home environment was supportive, accepting, and caring felt confident in their ability to self-disclose to others, compared to youth with a less favorable home environment. As YPWH face ongoing decisions regarding self-disclosure, a supportive home environment may motivate them to self-disclose because of their own desired and positive goals. More importantly, a supportive home environment alongside emotional support, characterized by intentional verbal and nonverbal ways to show care, affection, and understanding of the youth’s problem or concerns, may improve YPWH’s experience of the disclosure event. For example, emotional support from parents and their social networks may facilitate the formation of positive disclosure goals that, in turn, enable young people to use effective verbal communication strategies and elicit a supportive reaction from the confidant (Chaudoir et al., 2011).

In contrast, we did not find significant associations between other types of social support (i.e., parental or primary caregiver social support and instrumental social support) and disclosure outcomes. This finding does not suggest that parental support and financial and other tangible resources are unimportant to YPWH. In our sample of YPWH, intangible resources in the form of emotional support appear more influential in assessing their disclosure efficacy and potential outcomes resulting from self-disclosure than tangible or instrumental support.

YPWH, with experiences of enacted and internalized HIV-related stigma, perceived self-disclosure as having negative outcomes and did not feel confident in their ability to self-disclose their status. This perception likely stemmed from YPWH’s or others’ experience of being insulted, mocked, called offensive names, or discriminatory acts due to their HIV serostatus. Prior experiences of discrimination, particularly after a disclosure event, affects subsequent disclosure (or nondisclosure) events (Chaudoir et al., 2011). In the case of YPWH who experienced negative outcomes, they will likely conceal their status to avoid adverse consequences of self-disclosure. In addition to enacted stigma, internalized HIV stigma was negatively associated with disclosure efficacy. Youth with higher levels of internalized HIV stigma reported lower levels of disclosure efficacy. This inverse association is consistent with numerous studies linking internalized HIV stigma to adverse health outcomes (Denison et al., 2020). YPWH who accept the negative societal characterizations and labels about PLHIV may perceive disclosure as a negative event, which diminishes YPWH’s efficacy or confidence in their ability to self-disclose. Internalization of HIV stigma may also decrease efficacy. YPWH with higher levels of internalized stigma are less likely to be confident in their ability to find the words to say when they share their HIV status, the right time and place to disclose their status, and the appropriate way to deal with how others respond, compared to their counterparts with lower levels of internalized stigma.

Our study results indicate that enhancing the emotional support of YPWH may improve their self-disclosure efficacy and lessen their negative perception of self-disclosure. Emotional support for YPWH may mean being attentive or empathetic when YPWH share their struggles and issues. It may also be characterized by providing care and empathy and creating a sense of belonging. Emotional support is also a critical component of an enabling environment that provides YPWH with a safe and supportive environment, access to youth-friendly health and social services, and linkage to the larger community and supports available to them (Chowa et al., 2023). A starting point for parents, caregivers, and relatives of YPWH is to create a home environment that is supportive, caring, and attentive to the emotional and mental health of YPWH (Goodman et al., 2020). In turn, a caring home environment may buffer the impact of stigma experiences on health and wellbeing and motivate YPWH to pursue desirable self-disclosure goals.

YPWH and their families may benefit from social support and parenting interventions that create a support system for youth, emphasizing emotional support, companionship, and belonging. Similarly, these interventions may equip parents, siblings, and other family members with the skills to provide developmentally appropriate and affirming emotional support. Recent studies in Zambia identified that social support and parenting interventions play an essential role in HIV disclosure by reducing HIV stigma and helping young people cope with HIV stigma manifestations (Stangl et al., 2021). More importantly, these interventions are needed in Zambia as resource unavailability to support young people pre- and post-disclosure events remains a crucial factor affecting self-disclosure and low disclosure rates among YPWH, especially in areas outside urban centers (Tsuzuki et al., 2018). Although disclosure may benefit HIV prevention, it is equally important to recognize the right of YPWH with undetectable HIV viral loads to choose whether to disclose. A major benefit of having an undetectable viral load is the prevention of sexual transmission of HIV, also called treatment as prevention or undetectable = untransmittable (Calabrese & Mayer, 2019).

Our findings should be interpreted within the context of the study’s limitations. First, the representativeness of our sample is weak due to our sampling design, recruitment methods, and project setting. YPWH in the study were recruited from health facilities, a group of YPWH with a more favorable attitude towards disclosure, compared to a community-based sample of YPWH who may or may not be in treatment. We used the ART enrollment list to identify eligible YPWH. This sampling frame excluded YPWH who were not in treatment or dropped out of treatment. Similarly, the study was conducted at two of the largest health facilities in Eastern Province. We selected these two health facilities to ensure that we could recruit between 50–60 YPWH per site. Additionally, the HIV stigma experiences of our sample of YPWH might be different from the experiences of their peers with limited support systems and who are nonadherent to antiretroviral therapy. Unlike a community-based sample, YPWH remained in care during our study recruitment. Thus, our study sample may not represent all YPWH in the country, which limits the generalizability of our findings to the population of YPWH in Eastern Province and Zambia. Second, findings are based on cross-sectional data, with weak evidence of causality. Future research should consider longitudinal data to establish temporality and assess mediating relationships, including the role of social and emotional support in the relationship between HIV stigma experiences and disclosure outcomes. Third, although our stigma and social support measures have been used in sub-Saharan Africa, the scales we used to assess different types of HIV stigma experiences and social support may not reflect the same lived experiences or important sources of social support among YPWH in this study. Similarly, the current study did not collect data on self-disclosure with sexual partners. Although we collected data on their sexual behaviors, these items did not indicate the rate of disclosure and the frequency of sexual activities among the sample.

Conclusion

Young people’s confidence in their ability to self-disclose and their assessment of negative outcomes associated with HIV disclosure are influenced by emotional support, experiences of HIV stigma, and the quality of the home environment. Emotional support may help YPWH cope with daily stressors, including their experiences of internalized and enacted HIV stigmas, and may foster a supportive home environment. Appropriate interventions may include stigma reduction, positive parenting, and social support programs that enhance emotional support provided by families and friends.

Key Considerations.

  • There are many benefits to showing empathy and creating a sense of belonging for young people living with HIV (YPWH).

  • Emotional support influences YPWH’s efficacy to self-disclose their HIV status.

  • Sources of emotional support for YPWH include family and non-family members. Nurses and social workers are important sources of emotional support in healthcare settings.

  • Although disclosure may benefit HIV prevention, it is equally important to recognize the right of YPWH with undetectable viral load to choose whether to disclose.

  • Emotional support should be strengthened to minimize internalized HIV stigma among YPWH.

Acknowledgments:

We thank the youth who generously provided their time to participate in the study. We also thank the administrators and staff in the project hospitals for allowing their institutions to be part of this research, and the field interviewers at Rising Fountains Development Program for their data collection support. We thank Professor Gina Chowa and Mohit Tamta for their technical assistance.

This study was funded in part by the Center for AIDS Research at University of North Carolina at Chapel Hill (P30 AI050410) through its Developmental award to the first author (Rainier Masa, PhD). The funder did not take part in the design, collection, analysis, or interpretation of data in this study or in the writing or submission of this manuscript.

Footnotes

Specifically, using the CRediT taxonomy, the contributions of each author is as follows: Conceptualization: R. Masa and M. Zimba; Methodology: R. Masa; Data Curation: G. Zulu; ; Formal Analysis and Investigation: R. Masa., G. Zulu, G. Zimba, and M. Zimba; Project Administration: G. Zimba and M. Zimba; Writing – original draft preparation: R. Masa; Writing review and editing: R. Masa, J. Zulu, and D. Operario

Conflict of Interest: The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

Contributor Information

Rainier Masa, SCHOOL OF SOCIAL WORK UNIVERSITY OF NORTH CAROLINA, CHAPEL HILL, NORTH CAROLINA, USA.

Mathias Zimba, RISING FOUNTAINS DEVELOPMENT PROGRAM, CHIPATA, EASTERN PROVINCE, ZAMBIA.

Gilbert Zimba, RISING FOUNTAINS DEVELOPMENT PROGRAM, LUNDAZI, EASTERN PROVINCE, ZAMBIA.

Graham Zulu, GLOBAL SOCIAL DEVELOPMENT INNOVATIONS, UNIVERSITY OF NORTH CAROLINA, CHAPEL HILL, NORTH CAROLINA, USA.

Joseph Zulu, SCHOOL OF PUBLIC HEALTH, UNIVERSITY OF ZAMBIA, LUSAKA, LUSAKA PROVINCE, ZAMBIA.

Don Operario, ROLLINS SCHOOL OF PUBLIC HEALTH, EMORY UNIVERSITY, ATLANTA, GEORGIA, USA.

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