# Disclosure Within HIV-Affected Families

edited by : Grace Gachanja, Gary J. Burkholder and Aimee Ferraro published in : Frontiers in Public Health

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# DISCLOSURE WITHIN HIV-AFFECTED FAMILIES

Topic Editors:

Grace Gachanja, Walden University, United States Gary J. Burkholder, Walden University, United States Aimee Ferraro, Walden University, United States

Image: Red Confidential/Shutterstock.com

While HIV/AIDS is a global public heath challenge, its impact is arguably greatest in the Sub-Saharan Africa (SSA), where new infections account for approximately 66% of the total number of HIV-positive persons globally. In SSA, medical, social, and economic resources are limited, thus necessitating innovative approaches to disease prevention. One of the mechanisms of prevention that is most promising occurs through HIV disclosure to family members (e.g., adult sexual partners) generally, and to children in particular. Our emphasis in this eBook is on HIV disclosure to children because it has multiple benefits, including improved adherence to antiretroviral medication treatment and understanding at an early age of the impact of sexual activity on the spread of HIV. While there is a noticeable gap in research on HIV disclosure to younger children, some of the general reasons for non-disclosure include concerns about fear of adult partners leaving relationships, and that children are too young to comprehend the severity of the situation and may tell others outside the family. Thus, it is critical to better understand how the HIV disclosure process happens (or does not happen) within HIV-affected families, as well as the best practices on how to disclose. In this eBook, we present a combination of empirical research studies and critical literature reviews that investigate the reasons for and for not disclosing HIV status within HIV-affected families and provide evidence-based practices that could be adopted by healthcare professionals to help HIV-positive parents facilitate disclosure activities within these families. This information can also be used by researchers, practitioners, and stakeholders who are in a position to influence policies on effective HIV disclosure practices, guidelines, and programs.

Citation: Gachanja, G., Burkholder, G. J., Ferraro, A., eds. (2018). Disclosure Within HIV-Affected Families. Lausanne: Frontiers Media. doi: 10.3389/978-2-88945-526-3

# Table of Contents

*06 Editorial: Disclosure Within HIV-Affected Families* Grace Gachanja, Gary J. Burkholder and Aimee Ferraro

#### ORIGINAL RESEARCH

Diane Cooper, Joanne E. Mantell, Ntobeko Nywagi, Nomazizi Cishe and Katherine Austin-Evelyn

Stella Namukwaya, Sara Paparini, Janet Seeley and Sarah Bernays

Heidi van Rooyen, Zaynab Essack, Tamsen Rochat, Daniel Wight, Lucia Knight, Ruth Bland and Connie Celum

#### SYSTEMATIC REVIEWS

*82 Perspectives and Practice of HIV Disclosure to Children and Adolescents by Health-Care Providers and Caregivers in sub-Saharan Africa: A Systematic Review*

Oluyemisi Aderomilehin, Angella Hanciles-Amu and Oluwatobi Ohiole Ozoya

# Editorial: Disclosure Within HIV-Affected Families

Grace Gachanja\*, Gary J. Burkholder and Aimee Ferraro

*School of Health Sciences, Walden University, Minneapolis, MN, United States*

Keywords: child HIV status disclosure, parental HIV status disclosure, HIV disclosure, HIV/AIDS, Sub-Saharan Africa (SSA), resource-poor setting, HIV disclosure process

**Editorial on the Research Topic**

#### **Disclosure Within HIV-Affected Families**

This special issue, "Disclosure Within HIV-Affected Families," welcomed manuscripts primarily focused on disclosure of a parent's and/or a child's illness to HIV-positive, negative, and untested children within HIV-affected families. Our goal was to increase the body of knowledge available on how disclosure is performed within these families; however, we did choose to include two manuscripts exploring disclosure among adults.

The majority of the original research was conducted in countries within Sub-Saharan Africa (SSA) where the HIV/AIDS epidemic continues to affect populations disproportionately and where disclosure practices are arguably most critical. The systematic reviews drew from the global published literature on HIV disclosure.

There was a noticeable gap in the literature on disclosure to younger children. In addition, there are few interventions presented that are designed to disclose to younger children. One pervasive assumption is that older adolescents can handle the emotional aspects of disclosure while younger children cannot. Researchers noted in their literature reviews that early disclosure aids in ART adherence and prepares children to protect themselves and their peers as they move into the teenage years when drug and sexual experimentation increases. The research presented suggests that disclosure interventions/practices which train caregivers/parents/partners and healthcare professionals (HCPs) on how to disclose, and then provides post-disclosure support to the persons disclosed to and to the disclosing caregivers/parents/partners, may be important. Summaries of the manuscripts are provided below.

# ORIGINAL RESEARCH

Bhatia et al. found that gender inequality in South Africa contributed to fear and mistrust within adult relationships leading to infrequent and complicated partial or implied HIV disclosure. The authors called for integrated interventions aimed at reducing barriers that lead to more trustful and effective communication among HIV-affected men and women.

Chaudhury et al. analyzed the effectiveness of a randomized controlled trial comparing a familybased intervention versus usual social work care to support HIV disclosure among families in Rwanda. Qualitative findings indicated that caregivers and children reported increased stress during the time of disclosure. The authors assert that the family intervention offered structured support for improved parental-child communication which resulted in improved family trust and child mental health.

Cooper et al. documented unexpected shifts in reactions expressed by study participants to their qualitative interviewers over the course of 3 interviews in South Africa. The authors postulated that richer data can be collected with several participant interviews over time as opposed to one-time cross-sectional interviews. During data collection, the possibility of ethical dilemmas arising when participants confide in researchers thereby blurring the researcher's versus a counselor's role during qualitative research was revealed.

Edited and reviewed by: *Anthony Santella, Hofstra University, United States*

> \*Correspondence: *Grace Gachanja<EMAIL_ADDRESS>
#### Specialty section:

*This article was submitted to HIV and AIDS, a section of the journal Frontiers in Public Health*

Received: *23 March 2018* Accepted: *24 April 2018* Published: *15 May 2018*

#### Citation:

*Gachanja G, Burkholder GJ and Ferraro A (2018) Editorial: Disclosure Within HIV-Affected Families. Front. Public Health 6:140. doi: 10.3389/fpubh.2018.00140*

6

Fair et al. found that disclosure is on the mind of HIV-positive parents who were perinatally infected, but they felt their children are still too young to understand the illness. The authors called for additional disclosure training for HCPs who provide adult HIV care because perinatally infected children will eventually transition into their care when they become adults and require future support to disclose to their HIV-positive and negative children.

Namukwaya et al. found that factors motivating disclosure by caregivers in Uganda included curiosity by HIV-positive young people, who reported harboring no resentment despite caregivers' pre-disclosure fears. The authors advocated for disclosure to young people to occur as a planned process with caregivers/parents receiving support from HCPs.

Okawa et al. examined adolescents' perspectives on the best HIV disclosure practices in Zambia, one of the highest HIV-burdened countries in SSA. Adolescents reported being emotionally impacted by disclosure but that it also improved their self-care, adherence to medication, and ability to speak about HIV with their caregivers. The authors called for adolescent post-disclosure support provided by caregivers/parents, HCPs, and peers.

Rochat et al. designed the Amagugu Intervention to enhance the capacity for HIV-infected mothers to disclose their status and educate their young primary school HIV-uninfected children about the disease. A pretest-posttest evaluation of the intervention was found to be acceptable, feasible, and adaptable in other settings. While the authors found that disclosure was not made easier, mothers reported feeling comfortable disclosing to their children and encouraging them to have healthy behaviors.

van Rooyen et al. presented a novel model of successful home-based HIV testing and counseling program with the potential to improve HIV testing, identification of infected family members, disclosure of illness, and linkage to care. The authors addressed implementation challenges that included but were not limited to cultural mores, intergenerational communication among family members, and privacy concerns especially for adolescents.

#### SYSTEMATIC REVIEWS

Aderomilehin et al. conducted a systematic review of SSA literature to determine the perspectives of HCPs and caregivers on disclosure practices to children and adolescents in the region. The authors found that partial disclosure was suitable for children before adolescence and full disclosure was best for adolescents with disclosure being performed by their caregivers with the support of HCPs.

Conserve et al. reviewed the global literature for interventions efficacious in assisting parents living with HIV to disclose their status to their children. Of the five articles from China, South Africa, and the USA, four interventions were found to increase HIV disclosure. Their findings suggested that these effective interventions were adaptable in different cultural contexts/settings.

Krauss et al. reviewed the global literature for reasons used to disclose or not disclose to children. They found that the top three reasons for disclosure were children's curiosity, to improve adherence, and the child's age or maturity level. The top three reasons for not disclosing included fear of the child's negative reaction, young age of the child, and the child's inability to keep the information secret.

Odiachi conducted a literature review on the association between pediatric HIV disclosure and health outcomes in SSA. Five major health outcomes were found including physical/physiological outcomes, psychosocial outcomes, adherence to HIV treatment, sexual and reproductive health, and disclosure of their status to others. The author recommended larger longitudinal studies focused on health outcomes of pediatric disclosure and the creation of policies/guidelines aimed at promoting and improving the low rates of disclosure among this population, especially in SSA.

The HIV disclosure process is known to be difficult and complex. This special topic sheds light on some of the issues that caregivers/parents/partners, children, and HCPs experience before, during, and after HIV disclosure. The manuscript authors suggest feasible interventions and recommendations for future research, in an effort to reduce the HIV disclosure burden within HIV-affected families.

#### AUTHOR CONTRIBUTIONS

GG, GB, and AF substantially contributed to the drafting, revising, and final approval of this editorial.

**Conflict of Interest Statement:** The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Copyright © 2018 Gachanja, Burkholder and Ferraro. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*,*

# The Role of Relationship Dynamics and Gender Inequalities As Barriers to HIV-Serostatus Disclosure: Qualitative Study among Women and Men Living with HIV in Durban, South Africa

*Divya S. Bhatia1 , Abigail D. Harrison1 \*, Muriel Kubeka2 , Cecilia Milford2 , Angela Kaida3 Francis Bajunirwe4 , Ira B. Wilson5 , Christina Psaros6,7, Steven A. Safren8 , David R. Bangsberg9,10, Jennifer A. Smit2,11 and Lynn T. Matthews7,12,13*

*1Department of Behavioral and Social Sciences, Brown University School of Public Health, Providence, RI, United States, 2Maternal Adolescent and Child Health Research Unit, Faculty of Health Sciences, Department of Obstetrics and Gynaecology, University of the Witwatersrand, Durban, South Africa, 3 Faculty of Health Sciences, Simon Fraser University, Burnaby, BC, Canada, 4Mbarara University of Science and Technology, Mbarara, Uganda, 5Department of Health Services, Policy and Practice, Brown University School of Public Health, Providence, RI, United States, 6Behavioral Medicine Program, Massachusetts General Hospital, Department of Psychiatry, Boston, MA, United States, 7Harvard Medical School, Boston, MA, United States, 8Department of Psychology, University of Miami, Miami, FL, United States, 9Oregon Health Sciences University, Portland, OR, United States, 10Portland State University School of Public Health, Portland, OR, United States, 11Discipline of Pharmaceutical Sciences, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa, 12Massachusetts General Hospital, Division of Global Health, Boston, MA, United States, 13Massachusetts General Hospital, Division of Infectious Diseases, Boston, MA, United States*

Background: This qualitative study investigated gender power inequalities as they contribute to relationship dynamics and HIV-serostatus disclosure among men and women living with HIV in Durban, South Africa. HIV serodiscordance among men and women within stable partnerships contributes to high HIV incidence in southern Africa, yet disclosure rates remain low. Given the emphasis on prevention for HIVserodiscordant couples, this research supports the urgent need to explore how best to support couples to recognize that they are part of this priority population and to access appropriate prevention and treatment.

Methods: Thirty-five in-depth individual interviews were conducted with 15 HIV-positive men and 20 HIV-positive women (not couples) receiving care at public-sector clinics near Durban. A structured coding scheme was developed to investigate men's and women's attitudes toward HIV-serostatus disclosure and behaviors of sharing (or not sharing) HIV serostatus with a partner. Narratives were analyzed for barriers and facilitators of disclosure through the lens of sociocultural gender inequality, focusing on reasons for non-disclosure.

**Abbreviations:** ART, antiretroviral therapy; ANC, antenatal care; CHCT, couples-based HIV counseling and testing.

#### *Edited by:*

*Gary J. Burkholder, Walden University, United States*

#### *Reviewed by:*

*Gerjo Kok, Maastricht University, Netherlands Masoumeh Dejman, Johns Hopkins University, United States*

#### *\*Correspondence:*

*Abigail D. Harrison<EMAIL_ADDRESS>
#### *Specialty section:*

*This article was submitted to HIV and AIDS, a section of the journal Frontiers in Public Health*

*Received: 13 May 2017 Accepted: 11 July 2017 Published: 31 July 2017*

#### *Citation:*

*Bhatia DS, Harrison AD, Kubeka M, Milford C, Kaida A, Bajunirwe F, Wilson IB, Psaros C, Safren SA, Bangsberg DR, Smit JA and Matthews LT (2017) The Role of Relationship Dynamics and Gender Inequalities As Barriers to HIV-Serostatus Disclosure: Qualitative Study among Women and Men Living with HIV in Durban, South Africa. Front. Public Health 5:188. doi: 10.3389/fpubh.2017.00188*

Results: Among 35 participants: median age was 33 years (men) and 30 years (women); average years since HIV diagnosis was 1 (men) and 1.5 (women). Four themes related to gender inequality and HIV-serostatus disclosure emerged: (1) Men and women fear disclosing to partners due to concerns about stigma and relationship dissolution, (2) suspicions and mistrust between partners underlies decisions for non-disclosure, (3) unequal, gendered power in relationships causes differential likelihood and safety of disclosure among men and women, and (4) incomplete or implicit disclosure are strategies to navigate disclosure challenges. Findings illustrate HIV-serostatus disclosure as a complex process evolving over time, rather than a one-time event.

Conclusion: Partner communication about HIV serostatus is infrequent and complicated, with gender inequalities contributing to fear, mistrust, and partial or implicit disclosure. Relationship dynamics and gender roles shape the environment within which men and women can engage successfully in the HIV-serostatus disclosure process. Integrated interventions to reduce barriers to trustful and effective communication are needed for HIV-affected men and women in partnerships in which seeking couples-based HIV counseling and testing (CHCT) is challenging or unlikely. These data offer insights to support HIV-serostatus disclosure strategies within relationships over time.

Keywords: gender inequality, partner communication, qualitative, HIV-serostatus disclosure, barriers to disclosure, couples-based HIV counseling and testing, relationships, living with HIV/AIDS

#### INTRODUCTION

In South Africa, young women are disproportionately at risk for HIV (1–4); HIV prevalence increases from 7% among women aged 15–19 to 17% at ages 20–24, compared to 0.7 and 5% among men in those age groups, respectively (1, 2, 5). Rates of HIV serodiscordance within couples—wherein one partner is HIV positive and the other partner is not—are estimated at 25% in South Africa (6, 7), contributing to sustained high HIV incidence (3, 4). Despite research informing and promoting public health strategies to support prevention for HIV-serodiscordant couples in this setting, rates of HIV-serostatus disclosure remain low among both men and women, hindering access to prevention (8–11).

HIV-serostatus disclosure encompasses the process and experience of sharing one's HIV infection status with others (12, 13). This process can facilitate couples' access to available HIV treatment and prevention options (14). Studies suggest that men and women who communicate with their partner about HIV-serostatus are more likely to seek out and adhere to antiretroviral therapy (ART) (15–17), cope with their diagnoses (18), seek increased social support (19), and engage in protective behaviors including condom use (20, 21). However, difficulties surrounding disclosure communication may prevent the use of HIV prevention methods or result in suboptimal adherence to HIV treatment (14, 22, 23). HIV-serostatus disclosure may be particularly stressful for women due to fear of negative reactions from one's partner upon disclosure (24–26), including violence (27–29), discrimination, abandonment, or accusations of infidelity (24, 26, 29, 30). Safer disclosure strategies are needed (31), including harm reduction approaches (32), especially during pregnancy when women are often more vulnerable (27, 33–36). In addition, given the emphasis on prevention for HIV-serodiscordant couples (8–11), data are needed to explore how to best support couples to recognize they are part of this priority population and access prevention and treatment services.

Socially and culturally rooted gender power inequality within relationships and intimate partner violence place South African women at increased risk of HIV infection compared to men (3, 4, 33). South African gender norms are rooted in sociocultural expectations and historical contexts of violence and oppression (33), resulting in men often leveraging more power in sexual partnerships (3, 9, 33). Gendered social norms that enable male power in sexual relationships also include intergenerational relationships between younger women and older men (4, 9). Women may experience difficulty negotiating safer sex practices (33), or communicating about intimacy (37), adding to the difficulty of discussing HIV serostatus or similar topics (20, 21, 37–39). The intersection of HIV and gender power inequality within relationships has been explored and analyzed extensively as an important sociocultural determinant of HIV risk (33, 34), yet the implications for HIV-serostatus disclosure have not been comprehensively explored (24). Research from Uganda and Zimbabwe explored the process and implications of HIV-serostatus disclosure between sexual partners (12, 18, 20, 28, 39). However, the nuanced barriers and strategies to disclose have not been adequately investigated in this population of South African men and women living with HIV, and their partners (10, 14, 17), creating the need for a qualitative investigation.

We used qualitative methods to explore dynamics of HIVserostatus disclosure, and associated barriers and promoters, to inform strategies for safe disclosure among HIV-infected South African men and women. We investigated the process, experiences, and consequences of HIV-serostatus disclosure through the lens of gender inequality by exploring HIV-infected men's and women's narratives of non-disclosure within relationships. By exploring how gender roles and relationship dynamics influence the disclosure process, we offer insights to inform future interventions.

#### MATERIALS AND METHODS

#### Setting and Participant Recruitment

Data were collected within a study exploring reproductive decision-making and safer conception counseling experiences to safely address fertility goals among men and women living with HIV in eThekwini district, KwaZulu-Natal (40, 41). In this region, HIV prevalence among pregnant women attending antenatal services is estimated at 41% (42).

Individual in-depth interviews were conducted in June and July 2012 with HIV-infected men (*n* = 15) and women (*n* = 20) (not couples) enrolled in HIV care in one of four publicsector health clinics. Eligible participants were aged 18–40 years (women) or over 18 years (men), self-reported being HIV positive, were not pregnant (women), and spoke English or isiZulu.

#### Ethics and Regulatory Approvals

Ethics approvals were obtained from University of the Witwatersrand Human Research Ethics Committee (Johannesburg, South Africa) and Partners Healthcare (Boston, MA, USA). Permissions were obtained from local provincial and district Departments of Health and the individual health facilities. All participants provided written informed consent.

#### Data Collection

Open-ended in-depth interviews lasted approximately 1 h and explored participant experiences of reproductive goals, lived experiences of HIV, HIV-serostatus disclosure, and relationships. Interviews were conducted by research assistants fluent in English and isiZulu. Interviews were digitally recorded and transcripts were translated into English. Transcripts were reviewed for translation quality and fidelity by another study team member.

#### Data Analysis

The findings were compared and contrasted across participants and genders using a rigorous analytical process to establish robust qualitative results. Themes relating to promoters and barriers of HIV-serostatus disclosure were identified and explored, based on a conceptual framework developed to guide analytical decisions considering how gender inequality shapes partnership dynamics that influence HIV-serostatus disclosure behaviors. Transcripts were read to identify major themes, analyze parallels across men's and women's experiences, and inform the development of a coding scheme to categorize data. Multiple coders engaged in an iterative analytical process to ensure that codes were developed using a structured, consensus-driven process. The final coding scheme included both *a priori* themes and those developed from preliminary readings of the transcripts (43). Data were organized using NVivo 10 (QSR International) and separated into themes and subthemes relating to barriers and promoters of HIV disclosure. Data reduction methods were employed to extract the overarching narrative from the most pertinent data (44).

#### Conceptual Framework

The critical analysis framework (**Figure 1**) contextualizes HIVserostatus disclosure within community-level gender norms in South Africa. It examines the intersections between South Africa's HIV/AIDS epidemic and the realities of gender inequality. This framework identifies sociocultural gender inequality as the root cause of the higher rates of HIV infection among women through its influence on individual and couple-level behaviors and partnership dynamics. In turn, these gendered behavioral outcomes influence HIV-serostatus disclosure as well as decisions surrounding conception and childbearing that place women at higher risk of HIV infection than men (4). The coding scheme contextualized gender-specific data within this framework to analyze how gender inequalities influence the process of HIVserostatus disclosure within relationships.

#### RESULTS

The study population (*n* = 35) had the following characteristics: median age 33 years (men) and 30 years (women); average years since HIV diagnosis 1 (men) and 1.5 (women); 60% of men and 65% of women were on ART. Although a large proportion (11/15 men and 16/20 women) reported having disclosed their HIV serostatus, almost half of women did not know their partner's HIV serostatus (**Table 1**).

#### Overview

Four major themes regarding HIV-serostatus disclosure emerged. First, men and women fear HIV-serostatus disclosure to partners due to concerns about stigma and potential relationship dissolution. Second, suspicions and mistrust between partners underlie and contribute to lack of disclosure. Third, unequal power in relationships based on gender influences women's disclosure patterns, resulting in different disclosure practices for men and women. Fourth, these factors often lead to partial or incomplete disclosure. These findings reveal how men, women, and their partners experience HIV-serostatus disclosure as a complex process rather than a one-time event, and highlight important considerations for interventions.

#### Men and Women Fear Disclosing to Partners

HIV-serostatus disclosure was recognized as an important "first step" (30- to 34-year-old female) to caring for oneself and one's partner, although both men and women experienced tension with the process.

If a person is scared to say they are living with HIV…maybe the person she met is HIV positive…or both of them think they are negative. When one of them is positive, one might end up getting infected because

they did not tell each other the truth. (30- to 34-yearold female)

Participants feared consequences of disclosure, including stigmatization, accusations of infidelity, loss of a partner, and violence.

One woman's "*husband left [her] with their children*" after learning she was HIV infected (35- to 39-year-old female), while another expressed fear of "*what kind of person he [her partner] would be*" upon learning her serostatus (30- to 34-year-old female). Above all, participants feared being unable to live a normal life, inclusive of intimate relationships. Comments reflecting community stigma, such as "*most people are scared to be HIV positive*" (25- to 29-year-old female), or people think HIV "*mean[s] that, [it] is the end of your life*" (30- to 34-year-old male) were common.

Most frequently, participants who disclosed did so because they did not "*want [their partner] to get infected*" (30- to 34-yearold male), although motivations sometimes differed by gender. Pregnant women often disclosed to secure partner support to seek health care to prevent perinatal transmission and relationship dissolution.

To have more children…I would impregnate someone who doesn't know I'm [HIV-infected]. (40- to 44-yearold male)

These responses characterize gender differences in the approach to HIV-serostatus disclosure.

#### Suspicions and Mistrust within Relationships Underlie Lack of Disclosure

Both men and women viewed trust as the foundation for HIV disclosure within a relationship, yet frequently described partners as not "trustworthy" (40- to 44-year-old male).

Men have a problem…They are scared…to come forward even if they know their status. They are ruining lives because they want to infect you without [disclosing to] you. (35- to 39-year-old female)

Some participants feared that their partner had not been truthful when disclosing:

I cannot say she was being truthful when she said she's negative. Women, especially, say they are negative, even if [they] are positive. (25- to 29-year-old male)

This man's concerns about his partner influenced his own decision not to disclose.

Male respondents' suspicions of women as untrustworthy were often linked to infidelity:

I can…tell my partner that I have the virus …[but] at the end if she got sick she wouldn't know if she got it from me or from another person because women, they are not trustworthy sometimes. Also us men, we do not trust ourselves. (40- to 44-year-old male)

I have some doubts if it is me who made [my girlfriend] pregnant. (40- to 44-year-old male)

With women perceived as devious or subversive, conversations about condom use or HIV prevention were viewed as trickery, rather than honest attempts to disclose. Some men implied that women's non-use of condoms or other HIV prevention was willful, aimed at intentionally spreading HIV infection, such that they "deserved" to be infected (30- to 34-year-old male). At the same time, men and women both expressed concerns about infecting their partner, and also about the importance of HIV disclosure to prevent this.

Further, both men and women feared that condom use would mark them as HIV infected. Secretive behaviors were common: "*He does not know I am on family planning*" (25- to 29-year-old female). One woman's partner stated that her initiation of HIV treatment while he did not would "destroy him somehow" (35- to 39-year-old female), conveying a sense of mistrust that also precluded ARV use. Accordingly, one participant observed, "*[Many women] who are taking ARVs hide that they are taking [them]*" (35- to 40-year-old female). Others described how they exist in limbo concerning their own and their partner's HIV serostatus: "*I don't know [my partner's status], that's the main thing we're fighting over*…*me too, I felt I must not tell him [my status]*" (30- to 34-year-old female).

In contrast to these prevailing attitudes, some women and men described communication about disclosure as a way to "respect each other" (30- to 34-year-old female) and maintain a faithful, honest relationship. As two participants described:

As people who are positive, you must be faithful to your partner that you love. You have to be open about your status. You tell him and he tells you. (30- to 34-year-old female)

She knows mine [HIV-serostatus] and I am in this situation now because she…encouraged me to get tested. (30- to 34-year-old male)

Men and women who described disclosure as beneficial often viewed it as a means of communication, whereby "*no one gets discriminated between the partners*" (35- to 39-yearold male).

#### Unequal Power in Relationships Influences Gendered Disclosure Practices

Although women appeared more accepting of disclosure, they were generally more affected by gender inequality within relationships and more concerned about negative consequences. Because of mistrust, stigma, and the potential loss of a relationship and its social and economic security, many women lived with partners for some time without disclosing: "*I am scared to tell him [my partner] I am HIV positive*" (25- to 29-year-old female).

Often, this silence was based on fears of how a partner might react, including accusations of "bringing HIV into the relationship," reflecting respondents' concerns about infecting their partners as well as the negative reactions that might result:

I knew [for] ten years that I was positive. I was unable to tell him. I asked him to go and check and he came back with results showing he was negative. I was unable to tell him I am positive because I was thinking what he was going to say, from where I got this. (35- to 39-year-old female)

Another woman described a 12-year relationship, in which she did not know her partner's status while he knew she was living with HIV (30- to 34-year-old female), and she felt that asking him might disrupt the relationship.

Participant: This is the twelfth year [we are living together]…I don't know his status. *I: Does your partner know your HIV status?* Participant: Yes he knows. (30- to 34-year-old female)

Often, women were first to test for HIV, which added further stress by making them responsible for encouraging their partner to test:

I found out [about my infection] from my wife, she was the one who came first here. She tested…and found out she was positive. I came after and found out I'm positive. I'm about to start [ARVs]. (25- to 29-year-old male)

Although both men and women described HIV disclosure as stressful, women were generally viewed as more open to it. Indeed, some women appeared more comfortable with the process, reporting that "*[men] don't want to talk about things*  *concerning HIV*" (25- to 29-year-old female). Many women described a partner's unwillingness to test:

*I: Why did you not tell [your partner your status]?* Participant: If he agreed to come to clinic, we would find out together, I would tell him that I am already like this, go and check. (30- to 34-year-old female)

Whether they chose to disclose or not, both men and women expressed deep-seated concerns about a partner's reaction to learning their HIV status and the implications for their relationship.

#### Incomplete Disclosure As a Strategy to Navigate Disclosure Challenges

In some cases, participants thought their partner was HIV positive and encouraged them to disclose, but reported that they "kept on denying" (35- to 39-year-old female).

[My partner] was trying to tell me indirectly about his situation [HIV-positive], but he was scared. (20- to 24-year-old female)

Participants frequently learned of their partner's HIV-positive serostatus through unspoken clues, including physical signs and symptoms:

In order for me to become HIV positive, the condom burst. I went to check alone and came back with results to show him…There were some warts I saw on his private parts. I [knew] something is a problem. (30- to 34-year-old female)

Many participants believed that if their partner was HIV positive then they, too, must be positive. One woman explained how she sought assistance to explain serodiscordance to her partner:

I explained to her [the nurse] that I have this problem, I request you to [explain] so this male person could understand [serodiscordance], how [this infection] has been found in me, because it can happen that, it is a female person who is found positive and not the male. And sometimes, it happens that it is found in a male and not in a female. (35- to 39-year-old female)

Many men assumed that their partner was HIV negative without having been told directly.

Participant: I know her status. It is right. *I:* …*it is negative?* Participant: Even though she never told me, I know that she has nothing. (30- to 34-year-old male)

Sometimes, disclosure was implicit rather than explicit. In the following exchange, a woman tells her partner only that she is "sick," without stating directly that she is HIV infected.

*I: Does your partner know your HIV status?* Participant: No. But I told him that I am sick. *I:* …*So he knows?* Participant: He knows, yes. (35- to 39-year-old female)

Avoiding conversations about HIV status or providing untruthful responses were consequences of the fear surrounding disclosure and the fear of losing one's partner.

When I ask him what were the results of your blood test he will say 'hay you know,' then I'd ask 'what do you mean…HIV or negative?' then he will say negative. (25- to 29-year-old female)

These vague discussions about HIV status frequently led to partial or incomplete disclosure, in which individuals were uncertain about their partner's serostatus.

#### DISCUSSION

HIV-serostatus disclosure, a critical component of HIV prevention, is a complicated and often indirect process. This research found that (1) Partner communication about HIV serostatus is infrequent, and the gendered nature of mistrust, fear, and suspicion within relationships creates multilayered barriers to disclosure, often leading to partial or implicit disclosure; (2) participants were often uncertain about partner serostatus, reflected in vague discussions about disclosure; (3) relationships and gender roles impact HIV-serostatus disclosure by influencing the environment within which discussions about HIV-serostatus disclosure occur; and (4) multistep interventions that occur over time to facilitate the disclosure process and reduce barriers to effective communication and trust are needed for HIV-affected men and women in relationships. For many men and women in this setting, seeking couples-based HIV counseling and testing (CHCT) together would be challenging or improbable.

Couples-based HIV counseling and testing, an evidencebased strategy to promote HIV-serostatus disclosure within partnerships, has been implemented with some success in South Africa, Rwanda, and Zambia (14, 21, 45–47). While CHCT is a beneficial strategy for couples who are able to undertake HIV testing together, it is not effective for many couples given the relationship distrust and fears of disclosure highlighted in this study. CHCT can be especially challenging because it requires that both partners go together for HIV counseling and testing, and thus functions under the assumption that both partners are comfortable discussing their HIV status with each other and that they have already disclosed to each other. This expectation is not feasible for many men and women living with HIV infection. Our findings suggest a need for approaches with attention to gender and relationship dynamics, with particular attention to the fear, mistrust, and misunderstandings of serodiscordance surrounding disclosure (11–13, 18, 20, 25, 36).

Gender inequalities influence disclosure by fostering general distrust between men and women and deep fears of repercussions of disclosure. In this study, both men and women worried about infidelity, and women feared male partner violence as well as accusations about transmitting HIV, although implications of HIV disclosure differed by gender. Men feared losing their relationship and a partner with whom to have a child, while women's concerns focused on losing the relationship itself, including social and economic support. Many women feared violence as an outcome of HIV-serostatus disclosure; developing interventions to address these fears is critical. For both men and women, the level of relationship trust necessary for disclosure was often absent. Instead, suspicions, fears, and mistrust were barriers to disclosure. Importantly, men, women, and their partners experience disclosure as a complex process that evolves over time, not a onetime event. This process is complex because conversations about disclosure consider aspects of relationships beyond partners' serostatus alone. Couples-based strategies could be enhanced to include HIV counseling and testing as well as gender-based violence prevention and other intervention components to address gender inequalities and stigma, the issues identified as being of paramount importance in this study.

These findings highlight the gendered nature of mistrust and suspicion within relationships (11, 24). Consistent with research findings from other African settings, many women in this study felt obligated to disclose, yet simultaneously feared consequences of losing their partner (19, 20, 27, 29, 36, 38, 48) or accusations of infidelity and infecting the partner (27, 29). This led women to hide their HIV serostatus or even ART use (15, 16). Both men and women experienced HIV-serostatus disclosure as uncomfortable and stressful. These findings show that facilitators of the HIVserostatus disclosure process include trustful and honest partner communication while barriers include stigma, gender inequalities, and mistrust within the relationship. In this study, more women had disclosed and appeared more comfortable with the process overall, especially when motivated to help their partner test and receive ART (18, 26). Correspondingly, men more often assumed that they knew their partner's HIV status by forming conclusions based on prior instances or interactions with their partner, even without formal disclosure. Respondents had concerns about how their partners would react to their HIV disclosure, as well as broader concerns about infecting their partners.

Other research has found that gender power inequalities powerfully shape attitudes within relationships, influencing patterns of HIV disclosure. A widespread lack of communication grounded in fear and mistrust is also common in HIV-affected partnerships (9, 12, 45), as is confusion about serodiscordance. In this study, many men and women believed that if their partner was HIV infected then they, too, must be infected, a situation known as "testing by proxy" that reflects common misconceptions about HIV serodiscordance (49–52). Partly due to such misunderstandings about HIV serodiscordance, partial disclosure is common (12, 22, 31).

Our study shows how gender inequality serves as a barrier to HIV-serostatus disclosure. We found that likely facilitators of the disclosure process would be interventions that provide support for couples to address stigma, violence, and concerns about confidentiality within their relationship. Rather than approaching disclosure as a discrete, one-time event (21, 53), disclosure interventions may be more effective if they engage participants over time, especially if they are not yet prepared to seek CHCT together. Multisession interventions may be required to reduce stigma and support disclosure communication within relationships to have constructive conversations about HIV-serostatus disclosure and treatment. Strategies with known efficacy to increase communication between partners include community-based support groups for men and women (19, 37, 46, 47), which draw on psychosocial or peer-adherence models (47, 49, 54–56). Systematic reviews of HIV-serostatus disclosure interventions show that cognitivebehavioral group sessions, peer support groups, and voluntary partner notification may be effective in encouraging disclosure to sexual partners and can also impact morbidity and retention in care (31, 53). Combining such promising approaches to develop gender-focused interventions to teach disclosure strategies individually for HIV-affected men and women in partnerships who are unable to seek CHCT together would be a significant step. Multistep interventions conducted over time with individuals or single-sex groups of men and women in serodiscordant partnerships could focus on improving communication challenges identified as barriers to disclosure in this study. Potentially effective strategies to enable individuals to engage with disclosure prior to attending CHCT include facilitating role-playing scenarios, or home visits by community health workers. Behavioral approaches that incorporate gender-focused components, including gender equality and violence reduction, could be combined with interventions that address HIV stigma and barriers to honest communication to develop an integrated strategy that addresses gender inequality's role in HIV-serostatus disclosure (14).

This study's participants were not couples but individual heterosexual men and women discussing their relationships. There are advantages to this, however, as much can be learned about couples, with potentially greater honesty from men and women who knew their partner was not in the study. Differences in HIV disclosure among men and women, including some women's greater comfort with the process, may reflect social desirability bias and gender differences in reporting personal experiences. This may also result from women's greater participation in health care, usually through antenatal care, and greater likelihood of receiving HIV testing and treatment.

## CONCLUSION

This paper investigates how relationship dynamics and gender inequalities serve as barriers to HIV-serostatus disclosure, and attitudes and behaviors that may promote it. Relationship and gender roles shape the environment within which men and women can engage productively in the HIV-serostatus disclosure process. These findings highlight the consequences of implicit or incomplete disclosure and the fact that, despite participants' concerns about disclosure, non-disclosure is equally serious. Multisession interventions focused on engaging individuals or couples and health-care providers over time may reduce barriers to effective and trustful communication for the many HIVaffected men and women in partnerships in which seeking CHCT together is challenging or unlikely. Combination interventions to strengthen women's agency, and programs to change men's attitudes toward HIV-serostatus disclosure, are interventions worthy of further testing.

#### ETHICS STATEMENT

Ethics and regulatory approvals. This study was carried out in accordance with the ethics recommendations of the University of the Witwatersrand Human Research Ethics Committee (Johannesburg, South Africa) and Partners Healthcare (Boston, MA, USA). All participants provided written informed consent in accordance with the Declaration of Helsinki. The protocol was approved by the local provincial and district Departments of Health and the individual health facilities.

## AUTHOR CONTRIBUTIONS

LM was involved in all phases of the work. AH, AK, FB, IW, CP, SS, DRB, and JS were involved in study design, tool development,

#### REFERENCES

interpretation of data, and editing and final approval of the manuscript. DSB led data analysis and interpretation and production of the manuscript. MK and CM were involved in data collection, interpretation, and editing and final approval of the manuscript. All the authors read and approved the final manuscript.

#### FUNDING

This study was supported by the NICHD (R03-HD072602) and the Canadian African Sub-Saharan Africa AIDS Network. The analysis was also supported by NIH grants K23MH095655, K24MH87227, K24MH094214, and K23MH096651. The content is the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

implications for prevention of mother-to-child transmission. *J Int AIDS Soc* (2014) 17(1):19233. doi:10.7448/IAS.17.1.19233

*Team-Based Qualitative Research*. Lanham, MD: Altamira Press (2008). p. 137–62.

**Conflict of Interest Statement:** The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

*Copyright © 2017 Bhatia, Harrison, Kubeka, Milford, Kaida, Bajunirwe, Wilson, Psaros, Safren, Bangsberg, Smit and Matthews. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.*

# HI

*Sumona Chaudhury1 , Catherine M. Kirk2 , Charles Ingabire3 , Sylvere Mukunzi4 , Beatha Nyirandagijimana5 , Kalisa Godfrey4 , Robert T. Brennan2 and Theresa S. Betancourt2 \**

*1Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, MA, USA, 2Department of Global Health and Population, Harvard T.H. Chan School of Public Health, Boston, MA, USA, 3WE-ACTx for Hope, Kigali, Rwanda, <sup>4</sup> FXB-Rwanda, Kigali, Rwanda, 5 Inshuti Mu Buzima, Partners in Health (PIH), Kigali, Rwanda*

I

#### *Edited by:*

*Aimee Ferraro, Walden University, USA*

#### *Reviewed by:*

*Gerjo Kok, Maastricht University, Netherlands Legese Alemayehu Mekuria, University of Amsterdam, Netherlands*

*\*Correspondence: Theresa S. Betancourt<EMAIL_ADDRESS>
#### *Specialty section:*

*This article was submitted to HIV and AIDS, a section of the journal Frontiers in Public Health*

*Received: 31 March 2016 Accepted: 15 June 2016 Published: 29 June 2016*

#### *Citation:*

*Chaudhury S, Kirk CM, Ingabire C, Mukunzi S, Nyirandagijimana B, Godfrey K, Brennan RT and Betancourt TS (2016) HIV Status Disclosure through Family-Based Intervention Supports Parenting and Child Mental Health in Rwanda. Front. Public Health 4:138. doi: 10.3389/fpubh.2016.00138*

Keywords: children affected by HIV AIDS, Rwanda, family-based intervention, resilience, parenting

# INTRODUCTION

There is a dearth of literature examining the effects of caregiver HIV status disclosure within families in sub-Saharan Africa (1). Notably, there is limited examination of interventions that support parenting and child mental health during this process (2–4). Family-based intervention delivers psychosocial support for children through strengthening communication and parenting, resulting in enhanced disease-coping strategies in both the immediate and long term (5–10). In particular, family-based intervention may support parenting and promote child mental health during the process of caregiver HIV status disclosure to children (9, 10). Early research in South Africa has demonstrated the feasibility of family-based intervention to support caregiver HIV status disclosure to children (11).

Family-based intervention, also known as family strengthening intervention, was adapted for use within HIV-affected families in Rwanda (FSI-HIV) (10–15). Quantitative and qualitative analysis of data from an 80-family randomized-controlled trial of FSI-HIV versus usual-care social work was undertaken to examine supported caregiver HIV status disclosure within families in Rwanda1 .

#### MATERIALS AND METHODS

Quantitative and qualitative data from a randomized-controlled trial of a family-based intervention (FSI-HIV) versus usualcare social work were examined. Changes in parenting skills, child resilience, and child mental health during the process of supported caregiver HIV status disclosure were assessed (10). Quantitative data were collected at pre-intervention, immediate post-intervention, and at 3 months post-intervention, from December 2012 to June 2014. The relationship between supported HIV status disclosure and family relationships during the family-based intervention was explored through mixed-methods techniques (12–14).

#### Study Population

Families affected by caregiver HIV were recruited through referrals from health-center social workers in rural Southern Kayonza District in Rwanda for participation within a randomizedcontrolled trial of the FSI-HIV. A randomization sequence was generated in Microsoft Excel to assign families to the FSI-HIV intervention or to the control group of the trial. Randomization was conducted after baseline assessments. A sample size of 80 families was calculated, assuming 2 eligible respondents per family on average and moderate intra-class (within-family) correlation (approximately 0.5), to yield power of 0.80 to detect a standardized a "medium" effect size of approximately 0.50 in study outcome measures, assuming a standard alpha level of 0.05. Inclusion criteria required at least one caregiver to be HIV-positive and at least one school-aged child (7–17 years) to be resident within participating households. Caregivers agreed to discuss their HIV status with their children. Caregivers gave informed consent to participate for themselves and for their children. Additionally, children gave oral consent. Children could elect not to participate. A community advisory board was formed to oversee conduct of the study. All study procedures were granted approval by the Rwandan National Ethics Committee and the Harvard School of Public Health's Institutional Review Board.

#### Intervention

The FSI-HIV was designed, developed, and tested within families affected by caregiver HIV in Rwanda (10, 15, see footnote text 1). Previously published findings have demonstrated the acceptability and feasibility of FSI-HIV (10). The four main aims of the FSI-HIV comprise development of resilience through family narrative, improved parenting and family communication, HIV psychoeducation, and engagement of formal and informal sources of support (10, 15). Data about demographics and HIV status of all family members were collected in introductory meetings. Then, trained bachelor-level counselors delivered a series of six core modules within each household. Counselorled sessions with caregivers (Modules 1, 2, and 4) established the family narrative, discussed the effect of HIV on the family, and identified sources of resilience. Counselor-led sessions with children (Modules 3 and 5) established the family narrative from the children's perspective, provided psychoeducation on HIV, and identified sources of resilience. During the sixth and final module, caregivers led a family meeting and discussed the family's challenges, strengths, and goals (10).

#### Controls

Once enrolled in the study, participating households were randomized to receive the FSI-HIV intervention or care as usual social work. Control households received care as usual social work support through the locally available government-provided social services. This support generally consisted of advice concerning food insecurity and access to schooling. Study outcomes were measured in both FSI-HIV and control households at baseline, immediately post-intervention, and at 3-month follow-up.

# Study Outcomes

#### Parenting and Family Unity

Parenting was measured using local and combined parenting scales consisting of a 32-item scale (α = 0.91). The local parenting score contained 16 locally derived items (4), whereas the combined parenting score included an additional 16 items from the Parental Acceptance and Rejection Questionnaire, scored on four-point scale from 0 ("never") to 4 ("every day") (16). Family unity was assessed on a scale of 0 (never) to 3 (every day), using a 15-item scale derived from local qualitative data (α = 0.93) (4, 10). Parenting and family unity scores were developed and validated within Rwandan families in prior mixed-methods studies (15). Questionnaire components capture varying dimensions of parent–child and family relationships (**Table 1**) (15).

#### Child Mental Health

Child depression was measured using a locally validated version of the Center for Epidemiological Studies Depression Scale for Children (CES-DC) (17). Child combined anxiety–depression was measured using a 23-item adapted youth self-report (α= 0.93) scored as the mean of items from 0 ("not at all true") to 3 ("often true") (18). Child resilience was measured using an adapted Version of the Connor–Davidson Resilience Scale (CD-RISC) (19) and from local qualitative data (α = 0.92) and scored as the sum of all items. Child prosocial behavior was measured using a 20-item scale from local qualitative data (α = 0.90) scored as the mean (4).

<sup>1</sup> Betancourt TS, Ng L, Kirk C, Brennan RT, Beardslee W, Stulac S, et al. Familybased promotion of mental health in children affected by HIV (2016, submitted).

#### TABLE 1 | Components of the parenting and family connectedness assessments.

#### Data Collection

Quantitative child and caregiver self-report measures of family factors and child mental health were developed and adapted to fit the local context and underwent forward and back translation processes (4, 20). Questionnaires were administered by local research assistants in Kinyarwanda using hand-held smartphones at baseline, immediately post-intervention, and at 3-month follow-up. Qualitative data were extracted from counselors' clinical notes to capture interventionist observations during child, caregiver, and family interviews through the course of the modules of the intervention.

#### Data Analysis

Quantitative analyses were performed using STATA 13.0. Means of child and caregiver self-reported parenting and child resilience and mental health scores with corresponding 95% confidence intervals were calculated and plotted.

Qualitative data were analyzed using thematic content analysis to identify and analyze patterns driven by *a priori* research questions (21): (1) What, if any, are the effects of the process of HIV disclosure within FSI-HIV families on the relationship between parents and their children? (2) What, if any, are the effects of the FSI-HIV intervention on the process of HIV disclosure with respect to parenting skills and child resilience and mental health? Data were analyzed inductively to identify codes, which were then further categorized to capture main patterns within the data. Themes from families' experiences were observed and developed from these categories.

#### RESULTS

#### Baseline Characteristics

Forty-one families were randomized to the FSI-HIV intervention and 41 families to treatment as usual. Approximately half of all families were dual-caregiver households. Most caregivers within FSI-HIV families were female (*n* = 42; 68.9%), HIV-positive (*n* = 52; 85.3%), and had a mean age of 41 years. The majority of children within FSI-HIV families attended school (*n*= 87, 96.7%) and 6.5% were HIV-positive (*n* = 6) (see **Table 2**).

TABLE 2 | Baseline characteristics of participants enrolled in family-based preventive intervention arm of trial.

#### Caregiver HIV Status Disclosure

A total of 18 (43.9%) of all FSI-HIV families experienced nondisclosure of at least 1 caregiver at baseline (see **Table 2**). The majority of families described maternal HIV status non-disclosure, with a lesser proportion of combined maternal–paternal HIV status non-disclosure and a minority of paternal HIV status non-disclosure. Within these families with non-disclosed HIV status at baseline, 15 went through a supported disclosure process (83.3%) representing approximately 37% of all families enrolled in the FSI-HIV arm of the trial. A total of 17 further families had experienced disclosure of caregiver HIV status in the past, which again had been predominantly maternal HIV status and combined maternal–paternal HIV status disclosure events. A small number of families described unstable, partial, or presumed disclosure experiences.

Mean scores of all study outcomes were graphically displayed with corresponding confidence intervals over the pre-intervention, post-intervention, and at 3-month follow-up after for FSI-HIV intervention and control families (**Figures 1**–**3**).

#### Parenting and Family Unity Quantitative

Trends in parenting are displayed through graphical representation of mean self-report scores and corresponding 95% confidence intervals in **Figure 1**. Child-reported mean parenting scores appear to decrease post-intervention among the FSI-HIV participants compared with apparent increases in the treatmentas-usual arm of the trial, while caregiver-reported parenting scores

randomization), immediately post-intervention, and at 3-month follow-up.

appeared to increase post-intervention (**Figure 1**). Both local and combined mean parenting scores remained stable in the FSI-HIV arm of the RCT by 3-month follow-up. Patterns in parenting score reports were closely mirrored by changes in family connectedness scores, reflecting commonalities within the measures concerning communication and trust (**Figures 1** and **2**).

#### Qualitative

Caregiver HIV diagnosis and disclosure were noted to have effects on the family through a number of potential mechanisms. Caregivers reported reduced coping at the time of HIV diagnosis and disclosure. Grieving processes undermined caregiver capacity to care for children. Additionally, caregivers reported increased marital stress and conflict. Children underwent adjustment responses during the disclosure process. Parental self-assessment of parenting improved during the intervention. Child assessment of parenting also improved, following an initial period of adjustment following caregiver HIV status disclosure.

Since being informed they are HIV positive, they have lost hope and cannot work because they think they will die tomorrow. They lose confidence in their partner or the entire family, and progressively become depressed.

The parents accuse each other and the children think that their parents are going to die and worry about becoming orphans. The children have dropped out of school and are not happy at home as they only see their parents arguing. As the parents are not coping well, everyone in the family is affected.

First parents have to have hope themselves without hopelessness because when children see their parents

planning and caring for them, they automatically have hope. If parents have a good relationship, HIV would not be a problem for their children otherwise they think that their parents will die soon. (Counselor, Module 2)

Children described stress responses to parental HIV diagnosis and disclosure. Frequently children described assuming caregiving responsibilities for the family in response to family stress.

When she (the mother) was informed of her HIV serostatus, she became sick. Her first-born tried to help her even though he was very young. He was asking her what he could prepare for her, and he did his best to organize the house and to comfort his young brother and sister. The Holy Spirit motivated him to do so until her mother got some strength.

Overall life in the family changed, the children were depressed and had to work and look after their mother. The elder sister stopped schooling in order to take care of her mother. (Counselor, Module 2)

Partial or unstable parental disclosure was associated with worse effects on child mental health when compared with full disclosure. Children feared discovering the diagnosis from outside of the family and possible community stigmatization. This undermined trust in caregivers contributing to reduced child-reported parenting scores.

Everything is changing, children are losing trust in their parents and are looking for comfort elsewhere. It would help them to know the diagnosis from the parents and not hear it outside and also children would feel trusted. (Counselor, Module 2)

Family was arguing, quarreling, because there was no proper channel of communication and the result was poor family functioning and poor school performance for children. (Counselor, Module 2)

Family intervention offered structured support for improved parental child communication with improvements in family relationships and child mental health. The FSI-HIV provided support to parenting.

The caregiver did a great job in leading the session especially in HIV discussion. It was constructive to her children and she gave them a comforting message. The caregiver mentioned that the discussion was helpful to discuss HIV with the child and the child would ask how her mom became HIV positive, and how she can herself be prevented from HIV/AIDS. (Counselor, Module 4)

I learnt different things about HIV and I was very happy. I wish to continue the conversations. (Final Family Meeting, Child 11 years)

#### Child Resilience and Mental Health Quantitative

Child-reported resilience and mental health quantitative scores increased over the course of the intervention as displayed in **Figure 3**. Further investigation of the possible mediating role of the intervention in improving child mental health through supported parenting in HIV-affected families undertaking disclosure is warranted (**Figure 4**).

#### Qualitative

Child resilience and mental health improved during the process of disclosure within intervention families.

HIV status is now no longer a major problem for the family. Interventionist assured the mother, that through parenting skills and communication she will be empowered and can learn which proper channels to use in order to handle those issues. (Counselor regarding Mother, Module 2).

I learned how to tell my children about my status; I feel very relaxed about it and I hope that I will be able to do it in this week. Before when I thought about it, it was like a heavy burden and very difficult but now I think that is easier. (Counselor describing Mother's response, Module 2).

The family group sessions went well, I enjoyed being part of the family group sessions. We discussed about many things including child behavior, HIV/AIDS and how to talk to children and understand them, and be there for them in order to have time for talk. After the family meeting led by FSI-HIV interventionist we would like to go on by holding regular family meetings in order to avoid depression and not feel down. (Counselor describing Mother, Family Review)

Resilient caregivers can make their children resilient. (Counselor, Family Review)

Children described improvements in communication, trust, and honesty. Additionally, children reported greater hopefulness, resilience, and confidence in the family over the course of the intervention.

She said that he enjoyed the session because she learned more about HIV while the caregiver was satisfied because before it was hard for her to discuss with her children about HIV but then after the family meeting she felt relaxed. She was happy also because her children didn't have emotional problems while talking about HIV in the family. The family is very happy, children did well in school and the whole family is proud of it! (Follow-up Family Meeting)

## DISCUSSION

Disclosure of caregiver HIV status to children can be challenging and is often an ongoing process rather than a one-time event. Disclosure within a family environment is important to facilitate communication about HIV between family members (22). However, caregivers often fear negative consequences of disclosure such as being stigmatized or causing distress to their children (23). However, evidence suggests that caregiver HIV status disclosure conveys psychosocial and clinical benefits for HIV-affected families (24, 25).

#### Parenting

At the end of the FSI-HIV intervention, family unity and child-reported parenting appeared to decrease in intervention families, with recovery and signs of resolution after the followup period (**Figures 1** and **2**). Trust was a common component to both the family unity and parenting scale scores. This suggests the possible mechanism of disrupted trust between parents and children underlying reduced parenting and family unity scores immediately surrounding the disclosure process. Discordance between caregiver and child-reported parenting may indicate differences between child and caregiver perspectives of relationships during family-based intervention and support of the disclosure process. In particular, while parents were gaining confidence in their parenting skills through the counseling sessions, children were adjusting to the disclosure of their caregivers' HIV status.

Increasing numbers of children are being affected by caregiver HIV, due to expansion of ARV programs across sub-Saharan Africa. The family is an important focus for intervention for delivering psychosocial support including child protection (6, 11, 26, 27). Prior studies have investigated the impacts of the mediating role of parenting in reducing the impact of caregiver distress on child well-being in HIV-affected families (28). Stress on children surrounding the process of HIV status disclosure may be mitigated through supporting parenting *via* family-based intervention (28). Parenting competence is defined by caregivers' self-efficacy through self-estimation of competence or ability to positively influence the development of their children in their parenting role (29). Caregivers with psychological distress lose self-esteem as caregivers or may perceive they lack knowledge and skills to provide a suitable environment in which to care for their children (30, 31). HIV-positive mothers' major concern is their perceived inability to provide adequate care to their children when they became ill (32). Parenting behaviors, such as the maintenance of daily routines, may protect children when a parent is infected with HIV (33). Hence, supporting the parental role, through recognition of its centrality within the family and empowerment of caregivers with a sense of self-efficacy, may be of critical value during HIV status disclosure. Further assisting with parental competences and parental stress management through family-based intervention could contribute toward positive parental coping and reduction of harsh parenting (34, 35). Therefore, it is likely that improvement of parenting protects the mental health of children within the family during caregiver HIV status disclosure.

#### Child Mental Health

Children in HIV-affected families living in situations of compound adversity are more frequently called upon to assume adult roles in response to diminished capacity of caregivers to assume responsibilities. This shift in roles is thought to contribute to a negative series of effects on child mental health (36, 37). Burdens on child mental health are exacerbated in situations where there is partial disclosure with a consequent lack of trust within-family relationships and fear of community stigmatization (37, 38).

Child resilience and mental health were shown to improve over the course of the intervention in FSI-HIV families, when compared with control families (**Figure 3**). The causal directed acyclic graph (DAG) in **Figure 4** maps assumptions about potential causal relationships between HIV status disclosure, parenting, and child mental health (39). The effects of HIV status disclosure on child mental health during the trial were potentially mediated *via* parenting, as delineated in the DAG (**Figure 4**). Hence, by stabilizing changes in parenting following disclosure through family-based intervention, the potential harmful effects of caregiver HIV status disclosure on child mental health were mitigated. Improvements in child mental health within intervention families were also potentially mediated *via* improvements in parenting (40, 41).

#### Limitations

Counselors were not blinded as to whether they were offering the family-based intervention or usual-care social work. Baseline measures were undertaken prior to randomization. Hence, apparent differences at baseline between intervention and control groups in **Figures 1**–**3** are artifacts of the randomization process. There was insufficient evidence to justify repeating the randomization, which is generally reserved for extreme situations. There was insufficient justification to select variables for blocking (other than single- versus dual-caregiver status) prior to randomization. Qualitative data from control families were not available; hence, it was beyond the scope of this study to qualitatively compare control families' experiences of disclosure (42).

# CONCLUSION

Culturally appropriate interventions are urgently called for to better support parenting during caregiver HIV status disclosure to protect and promote child mental health. Multidimensional assessments are needed when developing and testing interventions for HIV-affected families, to evaluate parenting and family trust during the disclosure process. Future longitudinal studies are called for, to discern the effects of family-based intervention on parenting and child mental health within families undertaking caregiver HIV status disclosure. Further investigation may also illuminate potential mediation of the effect of caregiver HIV status disclosure on child mental health *via* parenting.

# AUTHOR CONTRIBUTIONS

SC: conception or design of the work, interpretation of data for the work, drafting the work, and agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. CK: contributions to conception and design of work, revising and drafting the work for important intellectual content approval of the version to be published. CI: revising and drafting the work for important intellectual content. SM, BN, KG, and RB: interpretation of data for the work. TB: contributions to conception and design of work, revising work critically for important intellectual content, final approval of the version to be published, and agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

# ACKNOWLEDGMENTS

The authors are grateful to the families who participated in this study and the dedicated team of Rwandan Family Strengthening Intervention counselors from Partners in Health/Inshuti Mu Buzima who worked tirelessly to help improve the lives of families affected by HIV in rural Rwanda.

# FUNDING

This study was funded by a grant from the National Institute of Mental Health (R34 MH084679) and supported by the Peter C. Alderman Foundation Junior Faculty Development Grant, through the Harvard TH Chan School of Public Health and through Julie Henry, Harvard Center on the Developing Child, Harvard Career Incubator Fund, and Harvard Center for AIDS Research.

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42. Creswell JW, Plano Clark V. *Designing and Conducting Mixed Methods Research*. Los Angeles: SAGE (2011).

**Conflict of Interest Statement:** The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

*Copyright © 2016 Chaudhury, Kirk, Ingabire, Mukunzi, Nyirandagijimana, Godfrey, Brennan and Betancourt. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.*

# Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa

#### *Diane Cooper1 \*, Joanne E. Mantell <sup>2</sup> , Ntobeko Nywagi <sup>3</sup> , Nomazizi Cishe3 and Katherine Austin-Evelyn3,4*

*1School of Public Health, University of Western Cape, Cape Town, South Africa, 2Division of Gender, Sexuality and Health, HIV Center for Clinical and Behavioral Studies, New York State Psychiatric Institute and Department of Psychiatry, Columbia University Medical Center, New York, NY, USA, 3Women's Health Research Unit, School of Public Health and Family Medicine, University of Cape Town, Cape Town, South Africa, 4 International Women's Health Coalition, New York, NY, USA*

#### *Edited by:*

*Aimee Ferraro, Walden University, USA*

#### *Reviewed by:*

*Antonella Caputo, University of Padova, Italy Deborah L. Mindry, UCLA Center for Culture and Health, USA*

> *\*Correspondence: Diane Cooper<EMAIL_ADDRESS>
#### *Specialty section:*

*This article was submitted to HIV and AIDS, a section of the journal Frontiers in Public Health*

*Received: 29 February 2016 Accepted: 27 April 2016 Published: 17 May 2016*

#### *Citation:*

*Cooper D, Mantell JE, Nywagi N, Cishe N and Austin-Evelyn K (2016) Narrative Methods and Sociocultural Linguistic Approaches in Facilitating In-depth Understanding of HIV Disclosure in a Cohort of Women and Men in Cape Town, South Africa. Front. Public Health 4:95. doi: 10.3389/fpubh.2016.00095*

The South African National Department of Health has rapidly extended free public-sector antiretroviral treatment for people living with HIV from 2007. Approximately 6 million people are living with HIV in South Africa, with 3.1 million currently on treatment. HIV disclosure stigma has been reduced in high prevalence, generalized epidemic settings, but some remains, including in research interviews. This paper documents the unexpected reactions of people living with HIV to interviewers. It highlights shifts over time from discussing daily events with researchers to later expressing distress and then relief at having an uninvolved, sympathetic person with whom to discuss HIV disclosure. While there are commonalities, women and men had gendered responses to interviewers. These are apparent in men's uncharacteristic emotional responses and women's shyness in revealing gendered aspects of HIV acquisition. Both women and men expressed stress at not being allowed or able to fulfill dominant expected masculine or feminine roles. The findings underline the role of research interviewers in study participants confiding and fully expressing their feelings. This greater confidence occurred in follow-up interviews with researchers in busy health facilities, where time of health-care providers is limited. It underlines the methodological value of narrative inquiries with research cohorts. These allowed richer data than cross-sectional interviews. They shaped the questions asked and the process of interview. They revealed participants' increasing level of agency in expressing feelings that they find important. This research contributes to highlighting pivotal, relational aspects in research between empathetic, experienced researchers and study participants and how participant–researcher relationships progress over time. It highlights ethical dilemmas in roles of researchers as opposed to counselors, raising questions of possible blurring of lines between research and service roles. This requires further research exploration. It additionally underscores the importance of "care for the carer." Furthermore, it emphasizes that cultural sensitivity to language involves more than merely speaking the words in a language. Culture, humor, dialects, conceptual issues, wordplay, common sense, and respectful attitudes to other languages, resonates.

Keywords: HIV disclosure, researcher–participant interactions, narrative method, qualitative cohort, language and culture, South Africa

## INTRODUCTION

"At its heart, public health is a conversation society has …" [(1), p. 3].

The South African National Department of Health has rapidly extended free public-sector antiretroviral treatment for people living with HIV (PLWH) from 2007. The country has the largest ART treatment program in the world (2). Approximately 6 million people are living with HIV in South Africa, with 3.1 million currently on treatment. Those PLWH currently qualifying for free life-long treatment include PLWH whose CD4<sup>+</sup> count is <500, pregnant women living with HIV (WLWH), those with a repeat episode of TB, children, or having AIDS-related symptoms (3). If South Africa transitions to free ART regardless of CD4<sup>+</sup> status, as WHO now recommends (4), this number will double. As HIV has become more common in generalized high prevalence epidemics such as in South Africa, stigma has been reduced.

The pattern of HIV disclosure among adults is likely to be selective over time. Disclosure to health-care providers, intimate partners, and chosen family members and friends is most common (5). Less common is broader openness of HIV status in residential communities, except where PLWH have a high level of institutional support, HIV activism, and advocacy (6). Disclosure is conditional on a number of factors, including individuals' perceptions of their own socioeconomic status in the community. Frequently, those with lower and higher socioeconomic status are more reluctant to disclose. Disclosure in the workplace is still uncommon, despite legislation in South Africa that prohibits discrimination (7). The dynamics of HIV status disclosure and issues of stigma is a much-studied topic. However, as the terrain of availability and access to treatment changes, it warrants continued research.

This article seeks to continue the conversation on disclosure by acknowledging how this process plays out in dynamic interactions between research participants and researchers. This is specific to research methods used and is situated within broader sociocultural and language contexts. The focus of this article is on the experiences and practices of qualitative researchers in discussing HIV disclosure with a cohort of women and men living with HIV. This took place during a period when access to ART was being increased. It documents participants' unexpected reactions to interviewers captured in sometimes, gendered "distress" and "well-being" narratives and their support needs. Additionally, it underscores the importance of relations between participants and researchers (8) in a qualitative, narrative cohort study and of sociocultural linguistic understandings.

#### MATERIALS AND METHODS

#### Study Design and Procedures

The study used a qualitative narrative methodology, with data collected through in-depth interviews (IDIs) with a cohort of women and men living with HIV. This was prior to implementation of a multilevel structural intervention study integrating sexual and reproductive health issues into HIV care. These interviews assisted in analyzing participants' subjective meanings and reactions to disclosure. Qualitative methods are inductive and search for meaning rather than measuring trends, proportions, or patterns of association. They place emphasis on human discourses (9).

Three interviews were conducted between 2007 and 2012 with approximately 9-month intervals between interviews. Participants newly diagnosed with HIV were recruited for the first interview from four HIV care clinics. These clinics serve clients with a demographic profile likely to be seen in other HIV care clinics in Cape Town's public health sector.

Qualitative interviewers were experienced, same-sex, and English fluent, first-language *isiXhosa*-speaking researchers. Semi-structured interviews were conducted in participants' preferred language. Initial interviews were conducted with 30 women (age range 19–61 years) and 27 men (age range 20–53 years) living with HIV. Second interviews were conducted with 23 women and 20 men, and third interviews with 20 women and 19 men. Baseline interviews without follow-up were excluded from this analysis. Loss to follow-up was primarily due to being too ill for interview, deaths, or moving out of the study area. A small number refused a follow-up interview or were untraceable. The same female and male interviewers interviewed participants at baseline and follow-up interviews.

Interviewers were encouraged to remain emotionally neutral and suggest interventions or referrals when the interview was complete.

Interviews were approximately 1.5 h in length, audio-recorded, and subsequently transcribed by the same interviewers. In the baseline interview, we asked the following questions: "After learning you were HIV<sup>+</sup>, who did you feel you could talk to about your HIV status, if anyone, and how did you go about talking with them?" "How did they react to your having HIV?" In the second interview, we asked: "Since you were last interviewed, have you changed how you feel about telling (more) people about your HIV?"

At the final interview, we asked: "Since our last interview, has there been anyone new that you have talked to about your having HIV?" Most interviews took place in a public-sector health service environment, attended by 84% of the population (10). Interviewers had regular group debriefings with the Principal Investigator to discuss their own feelings, how they had dealt with them, and strategies for addressing issues that emerged.

#### Ethics

The nature of the research project was explained to potential participants in writing and verbally in English and *isiXhosa*, and written informed consent obtained. Potential participants could refuse participation or withdraw at any stage without any repercussions. Participants' names and identities were protected. The Health Sciences Faculty Human Research Ethics Committee at the University of Cape Town and the Institutional Review Board at the New York State Psychiatric Institute – Columbia University Department of Psychiatry approved the study.

#### Analysis

In this article, we use participant IDIs, but also rely on interviewers' written field notes, experiences, practices, and minutes from meetings. All data were incorporated, managed, and coded using the Nvivo software package.

Using a coding list, thematic and narrative analysis was used to highlight how women and men reacted to HIV disclosure to researchers (11). The participants' narratives were examined in a sequence of events: (i) initial reactions to talking about disclosure experiences with interviewers, (ii) later confidences to interviewers, and (iii) disclosure-related counseling needs that arose from interviewer interactions. Reliability of interpretation of issues emerging was checked with the two researchers who conducted the interviews and another researcher. In addition, interviewer's written field notes and meeting minutes were compared with transcripts of interviews.

# RESULTS

**Table 1** provides a demographic profile of participants.

Participants' discussion about HIV disclosure with interviewers was a dynamic process. This changed from initially one of distance to one of trust invested in the interviewers over time. The quotations reflect key issues that emerged. All names used are pseudonyms.

#### First Interview – "Distance"

At first interview, many participants had not disclosed their HIV status outside of the health-care environment. The manner of

narrating disclosure to interviewers tended to be dispassionate and distanced. They typically dealt with the daily realities of taking medication and attending services. For example, Sizwe, a 50-year-old man said

Now I just think about taking my medication to keep me well. I am glad I have told my wife about my condition as she helps me to remember.

Nompendulo aged 18 reflected:

I have to make up a reason why I go to the clinic for my 'Beco' [Vitamin B complex], as my family doesn't know, but I just keeping on concentrating on keeping myself well.

#### Second Interview – "Part Distance" Covered and Unexpected Issues Arise – Narratives of Distress

By the second interview, participants engaged in an emotional process of investing confidence in the interviewers. Narratives of heightened dismay, feelings of exclusion from family decisionmaking, stigma, and other issues emerged spontaneously.

Men, in particular, became emotional during the second interview. Tearfulness about their feelings of loss of status as men in family decision making was common. Sizwe, a 50-year-old man, wept as he said

Usually in our culture, older men like myself are included in all decisions about the larger family. Since I told them I have HIV, I am alone. I am not invited.

He expressed discomfort as a man, in crying. Nevertheless, he was comforted when the interviewer listened quietly and patiently, allowing him to express himself fully. Thabo, 35 years old, shared with the interviewer feelings of great sadness in being incapable of providing economically for his family due to illness. He was unable to share these feelings with his family.

Jonga, 28 years old, became very emotional during the second interview. He said that he wanted to go home to tend to family cattle in which men are generally involved. However, he was too sick and feared disclosing his HIV status telephonically to his family. He received comfort from the researcher. After the interview, the interviewer counseled him on preparing to disclose his status to his family.

Nompendulo, aged 18, feared adverse and judgmental reactions from her family if she disclosed her HIV status. Initially, she was reluctant to discuss this in any depth with the researcher.

A shared theme among women and men was great distress in sharing their experiences of disclosure to researchers, beyond their comfort zone. For example, 40-year-old Nomsa painfully related that her husband had divulged her HIV status to the church minister and congregation in a rural area where she resided. When she relocated to Cape Town to avoid the stigma she experienced as a result of her husband's unsolicited disclosure, she experienced further trauma. Her husband had disclosed her status to the new urban minister who, in turn, disclosed this to the new pastoral community. During the interview, the interviewer sympathized. After the interview, she offered to talk with the church minister. Men tended to experience greater discomfort than women at first interview in sharing their feelings with researchers, but changed by the second and third interviews.

#### Third Interview: "Going the Full Distance" – Narratives of Relief and Gender

By the third interview, participants expressed relief in having someone who was not a family member or friend with whom to talk. Thando, a 32-year-old, gained comfort in speaking to the interviewer:

I feel there is a change because I feel right now – I can speak to you about it … but at the beginning, I was isolated and it was painful.

By the third interview, Jonga, who was mentioned earlier, was on ART. He said he felt joyful and relief at the advice the interviewer had given him. He had disclosed to his family and was ready to return to his family's rural residence.

As mentioned, Nompendulo was reluctant to discuss her reservation about disclosure with the interviewer initially. She thawed at the third interview, admitting that she thought she may be judged by the researcher as a female, having been sexually active at 15 years. At the third interview, she responded well to the researcher's suggestion that she "test the waters" by first finding out how different family members would react to someone in the family living with HIV. Watching a TV program with her family in which HIV arose was agreed as a good way to initiate this.

Xoliswa, aged 23, who lived with her boyfriend said:

When we talked earlier I thought about my being HIV positive because I need not to keep this to my heart, I need to tell somebody. It was easy with you, I lost my stress to talk, because you saw me time and again.

Phindiwe, aged 27, currently with no boyfriend said she was reluctant to disclose her HIV status broadly:

Because people usually think, especially as a woman, that its because you misbehaved whereas sometimes its not mischief because even yourself you do not know where did you get virus, I thought a first even you might think this but I was wrong and it was good to talk with you. You listened without worrying if it took time.

#### Language and Culture: of Bulls, Cows, Calves and Pigs

Participants commonly used metaphors in relating feelings. Monde, a 47-year-old man, used the term "bull," "cows," and a disabled "pig" to denote his dismay in exclusion from family decision making:

I used to be a bull, but now I am a cow among the bulls – they don't take me with them anymore. … those who are left [are like me] … a castrated pig in the house [valuable livestock, but 'impotent' in important matters].

Thandi, 35 years old, spoke about her discomfort despite being unwell, in not being able to fulfill gendered expectations of being able to work, care for children, and complete domestic chores. She used the phrase "letting the calf go to its mother." This term of speech indicated that it appeared she was fulfilling her roles while not doing so to avoid disclosure. However, she was willing to discuss her misgivings with respect to fulfilling gender roles and disclosure with the researcher.

#### DISCUSSION

At all three interview periods, participants' discussion of disclosure to researchers differed. Management of the disclosure process and style changed. This was reflected in the differences in participants' willingness to reveal thoughts and feelings.

#### Reflections: Disclosure Journey and Researcher Practices

As mentioned, men and women showed specific vulnerabilities in narrating their experiences of HIV disclosure. Stigma and distress were therefore sometimes gendered. This mirrored differences documented elsewhere with respect to HIV (12, 13). Men frequently feel they should not show emotions (12–14). However, male participants' uncharacteristically emotional narratives during later interviews were contrary to perceptions of normative, dominant male behavior. In contrast, men continued to identify with dominant masculine roles associated with being heads of household (15–17). Their role as decision makers in patrilineal extended families was perceived as critically important to their social and personal status. In their second interviews, men found a safe space to be very emotional about such issues as being stripped of their roles in long-term decision making in families and clans. This occurred despite shifts socially to HIV's normalization and perceived manageability. Their anxious, insecure, and sad behavior contrasted with their previously dominant male persona in an ongoing interview environment (16).

Mfecane argues that "if research is a social practice, then making friends in the field is a productive, sometimes essential strategy, the more comfortable they feel with us as researchers, the more insightful our research findings are likely to be" [(17) p125]. This was evident in our research. However, unexpected counseling tasks were frequently inadvertently "delegated" to the interviewers. The context-specific ethical dilemmas facing researchers are underscored in this study. While the researchers in our study may have been tempted to leap in and offer support as opposed to maintaining emotional neutrality during an interview, they had been trained to avoid this and leave any necessary intervention until after the interview. We had prepared a list of referral persons and organizations for researchers to offer participants, if they wished. This highlights issues raised in public health and social science research about the "situational complexities of ethical decision making as they arise somewhat unpredictably in the field and the very personal ways in which researchers had to deal with them; in the heat of the moment and then as this cools with introspection" [(18), p. 6]. The ethical issues of maintaining a distance between researchers and participants in the field require further research exploration.

#### Reflections: Cultural–Linguistic Issues

Important cultural–linguistic issues influencing the narratives emerged. Thematic and narrative analysis pays attention to what participants say, the process of story telling, the impact on what emerges, and the manner of retelling. Discourse analysis focuses on language, and how this reflects cultural and social linguistics. Phrases participants used reflect sociocultural elements to capture identity, experiences, as well as categories and labels (19, 20). Without a discourse analysis, we "skimmed the surface" in how language impacts. Qualitative cohort data lend itself to future discourse analysis. Hunter (21) and Dowling (22) highlight cultural meanings and "lost in translation" misunderstandings that occur in translating *isiXhosa* to English and *vice versa*. This underscores the key role of English fluent first-language speakers in continuity in interviewing, translation, and analysis. Similar to English in which we have the expression "take the bull by the horns," which is not literal but rather denotes confronting issues head on, in *isiXhosa*, there are different expressions about bulls with completely different meanings.

Both Dowling (22) (with respect to *isiXhosa*) and Epprecht (23) emphasize that translations or their understanding may meander far from their original meanings (22, 23). Dowling (22) singles out medical terminology, in giving an example of a medical questionnaire that needed the participant to choose the answer that "fits" where the meaning in i*siXhosa* translated to "epileptic fits." The use of metaphors by our participants about "pigs" and "cows," if taken literally, underscore these points. Culturally, specific references to bulls (males) being stronger and more competent than cows (females) predominated in these narratives. However, cows are also a critically important resource among *amaXhosa*, a source of wealth and bride-wealth (*lobola*). The latter can take on different meanings in "living" custom. Some men may interpret this as meaning "ownership" of a wife, while others may see this as needing to "treasure" a wife.  They are an appreciated economic resource. However, in this context, the addition of the term "castrated" gives them a different meaning. Our male research interviewer commented that if an analysis that misunderstood the cultural–linguistic underpinnings, the respondent would not recognize the interpretation of what he had originally said in the interview. Furthermore, the phrase of "letting the calf go to its mother" would be misunderstood unless the meaning from the *isiXhosa* translation was clear.

First-language *isiXhosa*-speaking experienced interviewers were able to understand the nuances in language and tune in to sociocultural linguistics. They uncovered hidden and spontaneous meanings. Similarly, in microbicide research, sexual violence being a reason for microbicides spontaneously emerged (24). In HIV and abortion research, the latter was perceived as much more stigmatized than HIV (25). Experienced and trained interviewers, aware of their researcher positions and socially and culturally sensitive, elicited often otherwise hidden reactions. They were thus able to console and later counsel appropriately. This assists us in cautioning against "parachute research" in which researchers unfamiliar with Xhosa culture may sometimes conduct research or analysis without understanding language or other issues within a specific context [(26), p. 101].

#### Limitations

There are several limitations. Reports are necessarily retrospective and subject to recall problems. This may affect the reliability of the narratives of disclosure to others, but not their emotions in interviewer discussions, which were immediately noted. We minimized English translation bias by having bilingual, *isiXhosa* first-language speakers interviewing, transcribing, translating, and participating in analysis. The aim of qualitative research is to produce rich insights and depth rather than breadth in its findings. "'Transferability' in this context means developing a theory that may determine or constitute broader social phenomena" [(27), p. 247]. Reflexivity, critical in qualitative research, involved steps to minimize and acknowledge researchers' own views that may intrude in data collection and analysis.

# CONCLUSION

HIV disclosure, when and to whom, forms an integral part of the lives of people living with HIV. Disclosure is not always a good thing and sometimes may not make logical sense rather than being a reaction to stigma. People frequently weigh up situations and make strategic decisions in this regard that have favorable outcomes for them. People take a meandering rather than a linear path in disclosure. Importantly, health-care providers, researchers, and many others they meet influence them along the way. Qualitative research interviewers are often able to spend more time with health service clients they interview than health-care providers in busy public-sector health facilities, particularly when they conduct follow-up interviews. Participants are able, as a result, to confide in them about disclosure and express their emotions fully. They can play an important role in participants' well being and moving forward to further disclosure, where this is the correct decision for them.

The findings underline the value of narrative inquiries with research cohorts in allowing richer data than in cross-sectional interviews. In addition, participants' increasing level of agency in being able to discuss what they feel is important and express their feelings to researchers is highlighted (28). Individuals' reactions on disclosure to researchers shaped the topic at hand (11) and raised questions that researchers might not have thought to ask and perhaps uncovered what participants did not initially intend to disclose (29). Issues of moving from daily concerns related to disclosure to expressing distress and later to relief are highlighted. Although there were commonalities between men and women, a pattern of gendered differences in responses is clear.

The research highlights pivotal, relational aspects in research between empathetic and experienced researchers, whose first language is the same as participants, and the manner in which participant–researcher relationships progress over time. Male participants disclosed distressing, emotional disclosure experiences to interviewers, sometimes contrary to gendered expectations. A series of interviews with the same participants revealed modified, and shifting narratives remind us once again: "At its heart public health is a conversation society has …" [(1), p. 3]. Furthermore, it underscores the importance of research interviewers who may need to counsel or debrief study participants at the end of an interview, having the necessarily skills, empathy, and understanding to do so. The process also continues to raises questions where lines may blur between research and service roles, and the experience needed in whether or not to counsel after the interview or refer participants to expert persons or organizations. Hekman's argument on agency captures this succinctly: "The elements of the mangle are mangled; they are mixed up with each other into a combination in which the various elements lose their clear boundaries" [(30), p. 24].

In addition, the importance of language beyond merely speaking the words in a language is highlighted. In research, Dowling's (22) call to ensure that we consider culture, humor, dialects, conceptual issues, word play, common sense, and respectful attitudes to other languages, resonates.

## AUTHOR CONTRIBUTIONS

DC was South African Principal Investigator, did the primary analysis for this paper, and led this paper. JM was the Principal Investigator in the USA and contributed to the writing of this paper. NN was a key researcher involved in male interviews for study, participated in the interpretation of analysis, and contributed to the writing of the paper. NC was a key researcher involved in female interviews for study, participated in interpretation of the analysis, and contributed to the writing of the paper. KA-E

#### REFERENCES

was a Master in Public Health student at the University of Cape Town. She participated in the literature review, the data analysis, and writing up as part of this study under the auspices of the Women's Health Research Unit at UCT. All authors reviewed and commented on all drafts, and ratified the final paper submitted.

#### ACKNOWLEDGMENTS

This research was supported by the National Institute of Mental Health (R01-MH078770, Principal Investigator: JM, M.S., M.S.P.H., Ph.D.; South African Site Principal Investigator, DC, Ph.D.), a center grant from the National Institute of Mental Health to the HIV Center for Clinical and Behavioral Studies at NY State Psychiatric Institute and Columbia University [P30-MH43520; Principal Investigators: Anke A. Ehrhardt, Ph.D. (1987–2013) and Robert H. Remien, Ph.D. (2013–2018)], and a South African Medical Research Council SIR Grant. The content is solely the responsibility of the authors and does not necessarily represent the official views of NIMH or the NIH. The authors appreciate the women and men who volunteered their time to participate in this study, the facility managers at the sites of our research, particularly Mr. David Binza and Desmond Grootboom; Ms. James, Kasker, and Langa; Leholo, Sharm Naidoo, Matiyela Sheila McCloen, and Shuping; Drs. Namane, Murie, Kriel, Mutsohi, and Mukiakini; and other staff at the services, who greatly facilitated our research and support from the Departments of Health in the Western Cape and City of Cape Town. The authors acknowledge the contributions of other Co-Investigators in the study – Jennifer Moodley (MBChB, Ph.D.), Landon Myer (Ph.D., MBChB), Karen Jennings (MBChB), Virginia Zweigenthal (Ph.D., MBChB), Deborah Constant (M.P.H.), Theresa Exner (Ph.D.), Susie Hoffman (Dr. PH), Zena Stein (MBChB), Chelsea Morroni (MBChB, Ph.D.), and Keith Cloete (MBChB).

**Conflict of Interest Statement:** The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

*Copyright © 2016 Cooper, Mantell, Nywagi, Cishe and Austin-Evelyn. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.*

# "When should i tell?": Perspectives on Disclosure to their children among Parents with Perinatally Acquired Hiv

*Cynthia D. Fair1 \*, Hannah Allen2 , Constance Trexler3 , Janet Osherow4 and Lawrence D'Angelo3 \**

*1Public Health Studies, Elon University, Elon, NC, USA, 2Elon University, Elon, NC, USA, 3Burgess Clinic, Children's National Medical Center, Washington, DC, USA, 4Pediatric Infectious Disease Department, MedStar Georgetown University Hospital, Washington, DC, USA*

#### *Edited by:*

*Grace Gachanja, Walden University, USA*

#### *Reviewed by:*

*Guillaume Stewart-Jones, Oxford University, UK Gerjo Kok, Maastricht University, Netherlands*

#### *\*Correspondence:*

*Cynthia D. Fair<EMAIL_ADDRESS>Lawrence D'Angelo<EMAIL_ADDRESS>
#### *Specialty section:*

*This article was submitted to HIV and AIDS, a section of the journal Frontiers in Public Health*

*Received: 29 February 2016 Accepted: 20 June 2016 Published: 30 June 2016*

#### *Citation:*

*Fair CD, Allen H, Trexler C, Osherow J and D'Angelo L (2016) "When Should I Tell?": Perspectives on Disclosure to Their Children among Parents with Perinatally Acquired HIV. Front. Public Health 4:140. doi: 10.3389/fpubh.2016.00140*

Adolescents and young adults (AYA) with perinatally acquired HIV (PHIV) engage in developmentally expected behaviors, such as establishing relationships and having children. Previous research has focused on pregnancy management/outcomes of AYA with PHIV. However, little research has focused on the parenting experiences of this emerging cohort and on their views of disclosure to their offspring. This article examines data from a pilot study of five AYA parents with PHIV on disclosure to their child(ren) (*n* = 7, 6 HIVnegative). Disclosure of their own HIV status to their children is on the minds of parents with PHIV. However, few currently have children old enough to understand the parent's diagnosis. Three parents indicated they would disclose their HIV status when their child was "old enough to understand" so that their child would be knowledgeable about HIV. One father also noted that he currently had more pressing parenting responsibilities beyond disclosure. When discussing their perspectives on disclosure, many referenced their personal stories indicating a link between their decision to disclose/not disclose to their child and their own disclosure narrative.  The mother of the only infected child "did not want to wait like my mother did" and planned to tell her son at an earlier age than when she learned of her own diagnosis. Clinical implications related to disclosure will be discussed and future areas of research identified.

#### Keywords: PHIV, disclosure, parenting, adolescent and young adult, children

Historically, children with perinatally acquired HIV (PHIV) were not expected to live to reach adolescence or adulthood (1). However, in the United States, about 22% of young adults with HIV, ages 13–24, have lived with the disease all their lives (2). Similar to many adolescents and young adults (AYA), this cohort is exploring romantic relationships, engaging in sexual activity, (3) and becoming parents (4). Previous research has focused on pregnancy management/outcomes of AYA with PHIV (5). However, little research has focused on the parenting experiences of this emerging cohort and on their views of disclosure to their offspring.

Although it is not possible to know how many AYA with PHIV currently have children, there are approximately 10,688 youth with PHIV living in the United States, and research has found that this population has high fertility desires/intentions, with over 80% expressing a desire to have a child in the future (6, 7). Childbearing motivations among AYAs with PHIV are strongly linked to experiences of parental loss due to illness, the wish to leave a legacy, and the desire to receive or offer unconditional love through the experience of parenting (8–10).

Experiencing parental loss or abandonment has a significant impact on any child, regardless of HIV status (11). HIV-affected children can face significant childhood trauma, including loss of one or both parents and a lack of domestic stability (12). The experience of living with a sick or dying parent due to AIDS can have a strong effect on the overall desire to have a child (10) and is also associated with high-risk sexual behavior during adolescence (13). The parenting experiences of AYA with PHIV may greatly color how they interact with their children and perceive their future and approach to parenting.

Adolescents and young adult parents with PHIV face many of the same challenges other young parents face, including financial worries and struggles with discipline (14). However, they also face HIV-specific issues, such as health concerns and the fear their child will experience HIV-related discrimination. Another unique feature of parenting with PHIV is whether and when to disclose their HIV status to their offspring, a topic largely unaddressed in the extant literature. Disclosure to a child about his or her parent with PHIV also, by default, discloses the HIV status of the child's grandmother.

#### DISCLOSURE OF PARENTAL HIV STATUS TO CHILDREN

Extensive literature has explored the effects of parental HIV disclosure to children. The review of related literature by Qiao et al. (15) found that parents living with HIV frequently considered the child's age and cognitive level as well as perceived benefits of disclosure when deciding whether to share their HIV status. Additional factors included concerns over stigma and possible discrimination. While the literature on the effects of parental HIV disclosure on child functioning is mixed, the preponderance of evidence points to positive long-term outcomes for children, especially among children who were informed at younger ages (16). For example, Tompkins (17) reported that children who were informed of their mother's HIV status felt better prepared for the future and expressed pride in their ability to reduce their mother's stress. Research has also found psychological benefits to parents following HIV disclosure within a sample of HIV-affected families in rural South Africa (18).

To date, limited literature has explored disclosure to children of parents with PHIV. In a small qualitative study, Evangeli et al. (19) found that four out of seven participants discussed disclosing their HIV status to their children frequently reflecting upon their own disclosure experiences. However, it is unclear whether they were parents at the time of the study. The purpose of this pilot study was to explore views of disclosure to their offspring among a sample of parents with PHIV.

#### PILOT STUDY

#### Participants

A purposive sample of five AYA with PHIV (four females) who had children were recruited from an urban tertiary-care facility in the southeast United States (mean age = 23.4 years, range 23–24). All identified as heterosexual and African-American. Mean number of children was 1.4 (*n* = 7, range 1–3; mean age = 2.4 years, range 3 months–4 years), and one child was HIV-positive. Six patients met study eligibility and five participated. One patient was unable to participate due to scheduling conflicts.

#### Procedure

A staff member from the clinic introduced the study to eligible patients. Audio-recorded, semi-structured, face-to-face interviews were conducted by a trained interviewer (Hannah Allen) and later transcribed. Participants were provided a \$50 gift card in compensation for their participation. The study was approved by the hospital's IRB.

Sample questions included:

*What thoughts do you have about disclosing your diagnosis to your child?*

*If you're going to tell your child, how are you going to tell her/him?*

#### Data Analysis

Transcribed interviews were entered into Atlas.ti 7.0, a qualitative data analysis software program (20). The authors used a grounded theory approach to analyze the data, which employs an inductive strategy designed to identify emergent themes (21, 22). Cynthia D. Fair and Hannah Allen independently read the interview transcripts in their entirety, and following the traditions of the grounded theory method, analysis began with a process of open coding. The readers met frequently to discuss identified themes and to come to consensus on the coding.

## RESULTS

At the time of the study, all of the participants had disclosed to their current significant other or the other parent of their child. However, two participants had not disclosed their HIV status to their partners at the time their children were born. All were in serodiscordant relationships. One of the participants had disclosed her status publicly and considered "the world" to know her status. None of the parents had told any friends about their illness, yet, disclosure to offspring was on their minds. However, few currently had children old enough to understand their parents' diagnosis. Findings indicated that their own disclosure experience, when and how they were told about their own HIV status, heavily influenced whether or not they planned to disclose to their child.

*Yes, I'm definitely going to disclose it to him*.

Three participants planned to one day tell their child(ren) about their HIV status, including the mother of the HIV-infected child. They stressed the importance of timing, indicating that a child should not be told at a very young age, but it was also important for the child not to find out from someone else. Participants noted that their children were smart and, as a result, would be able to understand their parent's HIV diagnosis.

A 24-year-old mother, currently in school, said she wanted to tell her daughter similar to how she had been told of her own diagnosis at the hospital through a "developmental type of a program" where, she said, "I remember drawing pictures of HIV, the blood cells…. I remember learning through pictures and them explaining it to me the reason why I was coming here." She explained that she accidentally told a friend she had HIV when she was younger and was ostracized as a result. "You don't understand what it is, and you don't understand. When you hear a certain term, you think negative. I think that's what happened in that situation [with my friend]." She explained it was important that her daughter understand the risk of rejection. "I feel like I should tell her when she's in school and beginning to learn about it" because she fears her daughter might say "Mommy has it." She also noted it was important for her daughter to have accurate information about HIV, "When you're learning about it in school, they don't actually explain it … For example, born with HIV and then being acquired with HIV like there's sex and drugs and anything. It's clearly different."

The only father in the study indicated his son would learn of his father's HIV status at some point in the future stating, "I have to tell him one day." However, his son was only 3 years old and other parenting demands took priority. When asked to speak about how he might disclose to his son, he explained that he had not disclosed his HIV diagnosis to anyone. Someone else informed his son's mother about his HIV status. He expressed remorse over his reluctance to disclose prior to engaging in sexual activity but stated, "I didn't know how to tell her, I don't know how to go about it."

The participant whose child had HIV was a 24-year-old employed mother who lived with her brother and son. She recognized that her situation was different because her child would have to learn of his HIV status. She indicated she had given disclosure a great deal of reflection stating, "I've thought about it [how to disclose to him] a lot." Referencing her own disclosure, she said, "I don't want it to be a wait, like how my mom did … I don't want it to be like that with my son, I want him to be aware ahead of time so he can know."

#### *I have no reason to*.

Two parents indicated they would not share their HIV status with their child. One 23-year- old participant received dialysis and had a difficult pregnancy. She referenced her own experience of finding out her status stating that she "overheard [her mom and others] talking, so [she] thought it was a good thing, because … Christmas was coming up, so I thought it was a surprise."  She [her mom] wasn't going to tell me at that age, because I didn't understand what it was." Her disclosure experience was negative and, as a result, she did not want to tell her son about her own status. She explained that he probably did not have HIV, based on the tests so far and that "most likely it's [the third test] going to be negative, so if he don't have it, I don't plan on telling him" that she has HIV.

The other parent who planned not to disclose her status to her children was a 24-year-old who lived in transient housing, was unemployed, and had lost custody of her three children. She was also the participant who claimed "the world" knew her status because she was very open about it. However, she said that she did not want to disclose to her children "because I don't want my kids to be worried about me."

#### CLINICAL IMPLICATIONS

The purpose of this study was to explore the disclosure perspectives of parents with PHIV and to draw upon the extant literature as well as the clinical experiences of the authors to highlight potential issues related to this emerging phenomena. Empirically based conclusions cannot be made from the study findings, yet they can serve as a springboard for future research and clinical considerations.

Clinical implications of disclosure to children of parents with PHIV depend upon both child- and parent-related factors. In general, timing of the disclosure should be based on the child's cognitive development and ability to understand the concept of illness (23). Furthermore, if the child is also infected then he/she will need to be told sooner as previous research indicates that children who are aware of their HIV diagnosis are more likely to be fuller partners in their care (24). Many pediatric HIV clinics have structured disclosure programs that provide a developmentally appropriate, and collaborative process involving both the caregiver and health-care provider to disclose a child's HIV status to him or her. Findings from the exploratory study highlight the importance of planned and intentional disclosure to children.

Resources addressing disclosure of HIV status to children are mostly geared to disclosure to a child with PHIV regarding his/ her diagnosis and not a parent's personal diagnosis to the child (25). Therefore, if the child is uninfected there may be less support from care providers related to disclosure. Additionally, resources diminish as an adolescent ages into adult care. The social support and services that were once prevalent in the pediatric/ adolescent clinics are stretched thin in the adult care setting due to the increased number of patients and different funding structures. Options for disclosure assistance and counseling for the adult with PHIV already in adult care are limited. Our findings suggested that those parents with PHIV who plan to share their HIV status with their child wish to wait until their child is older. Parents will likely be receiving care in an adult infectious diseases clinic at that time where disclosure is usually seen within the context of newly diagnosed patients or a sexual partner. HIV providers in adult clinics who are treating parents with PHIV may have limited experience with or resources for disclosure to a child. Parents may need support as they disclose to their child.

The World Health Organization and other organizations have readily available resources, which provide guidance on disclosure to children with HIV (23, 26). Cavolo et al. (25) note the cornerstones of disclosure to children with PHIV include developmentally appropriate and truthful explanations of the illness, validation of the child's concerns about the illness, clarification of any misconceptions, and ongoing support. These principles could also be applied when a parent discloses his/her HIV diagnosis to their child.

In addition to the child's developmental and HIV status, the health of the parent and his/her disclosure history should also be taken into account (23, 25). If the parent is asymptomatic, then the parent can afford to wait to give the child insight into the parent's health. However, delayed disclosure can result in accidental disclosure, which may lead to feelings of distrust as found in several of the disclosure narratives shared by the participants (27). Previous research indicates that, over time, children and adolescents adjust well to learning their parent's HIV status (28).