Perceived benefits and costs of disclosing HIV diagnosis to family members among people living with HIV in Southern China: An application of a decision-making framework

Abstract

People living with HIV (PLWH) would decide whether to disclose their HIV serostatus to others based on weight of perceived benefits and costs for the disclosure. Using cross-sectional data from 1254 PLWH in Guangxi, China, the study aimed to examine a framework of disclosure decision-making in the context of disclosure to family members (parents and siblings) through exploring the associations between disclosure and perceived benefits and costs of disclosure at individual and interpersonal levels. Univariate and multivariate regression analyses showed that HIV disclosure was associated with perceived benefits at both individual level (stress relief and social support) and interpersonal level (educating others and promoting family stability), but was not associated with perceived costs at either individual level (stigma and confidentiality breaching) or interpersonal level (family conflicts and concerns). Our findings suggest that perceived benefits rather than costs are associated with disclosure to family and play an important role in disclosure decision-making. These results may refine and expand the existing framework on decision-making of HIV disclosure focusing on PLWH’s weight of individual benefits and costs. Future interventions highlighting the benefits for their family and other members of their social network may be an effective strategy to promote HIV disclosure to family members.

Introduction

HIV disclosure (i.e., disclose HIV status to others) is a key issue in HIV prevention and care continuum (Chaudoir, Fisher, Simoni, 2011). HIV disclosure to sexual partners may encourage partners’ HIV testing uptake and promote protected sexual behaviors (Clum et al., 2013). HIV disclosure is beneficial for people living with HIV (PLWH) to reduce stress (Fekete et al., 2009), obtain social support (Dessalegn et al., 2019) , improve medication adherence ( Mi et al., 2019), and increase utilization of HIV-related health services (Kalichman, DiMarco, Austin, Luke, & DiFonzo, 2003). However, HIV disclosure also is a big challenge for PLWH due to their fears of stigma, discrimination, abandonment, and violence that may be associated with and resulted from disclosure. Under the consequence theory of HIV disclosure (Serovich, 2001), PLWH were more likely to reveal HIV status to others once the rewards outweigh the costs (Serovich, 2001). This consequence theory has been applied in various types of HIV disclosure including disclosure to sexual partners (Dessalegn et al., 2019), children (Qiao et al., 2015; Qiao et al., 2015) and healthcare providers (Jeffe et al., 2000).

However, few studies have focused on disclosure to family members. Family members (e.g., parents and siblings) are important members of one’s social network, and could be the main source of social support for PLWH (Dima, Stutterheim, Lyimo, & de Bruin, 2014). Several studies suggested that the main reasons to disclose HIV status to family members included obtaining psychological relief and social support (Kalichman et al., 2003). However, few studies have explicitly tested these correlates with a theoretical framework in the context of disclosure to family. In addition, previous studies also tended to examine the disclosure to both nuclear and extend family (such as cousin and grandparents) rather than focused on just the nuclear family (i.e., parents and siblings).

To address these knowledge gaps, the current study aims to test the consequence theory in the context of HIV disclosure to family members by exploring the relationship between HIV disclosure to family members and perceived benefits/costs of the disclosure at both individual and interpersonal levels.

Methods

Study site and participants

A cross-sectional survey was conducted in Guangxi Zhuang Autonomous Region (Guangxi) in China from October 2012 to August 2013. Among all 17 cities and 75 rural counties in Guangxi, we selected 2 cities and 10 counties with the largest cumulative number of HIV cases as our study sites. We randomly recruited approximately 10% of the reported cases from those sites with a total of 29,606 PLWH being the sampling frame. The staffs of local Center for Disease Control and Prevention (CDC) and the healthcare workers from local HIV clinics assisted with the recruitment. A total of 3002 PLWH participated in the survey and 2987 completed the questionnaire. Based on the research design of the original study, 1254 participants living with children were asked to answer additional questions on HIV disclosure and those participants were included in the current analysis.

Measures

Participants provided information on their age, gender, ethnicity, religion, marital status, residency, education, employment status, income (in Chinese currency yuan or CNY), number of people in the family and number of children. We also collected HIV-related information, including the mode of HIV transmission. All participants were divided into two groups based on their responses to the question “To whom have you disclosed your HIV diagnosis results?” Those who answered disclosing to at least one of their parents or siblings were viewed as having disclosed to their family. Otherwise, they were viewed as having not disclosed to their families.

Five scales were used to measure the perceived benefits and costs at individual and interpersonal levels (Table 1). The scales have a 4-point response option (‘strongly disagree’ = 0, ‘disagree’ = 1, ‘agree’ = 2, and ‘strongly agree’ = 3). We summed up the item responses to create a composite score for each scale. A higher score indicated a higher level of perceived benefits or costs.

Table 1.

Measures of benefits and costs of family disclosure

Variables		No of Items	Sample items	Response options	Cronbach’s alpha
Benefits
Individual	Stress relief	4	Release inner pressure	4-point response option (‘strongly disagree’ to ‘strongly agree’)	0.78
	Social support	5	I will receive emotional support after disclosing HIV status.	4-point response option (‘strongly disagree’ to ‘strongly agree’)	0.90
Interpersonal	Benefits for others	3	To educate others and let them reduce the HIV high-risk behaviors.	4-point response option (‘strongly disagree’ to ‘strongly agree’)	0.62
Costs
Individual	Sigma and confidentiality breaching	4	Being harassed and threatened	4-point response option (‘strongly disagree’ to ‘strongly agree’)	0.74
Interpersonal	Family conflicts and concerns	4	My family will worry about me	4-point response option (‘strongly disagree’ to ‘strongly agree’)	0.57

Data analysis

Independent-sample t test or χ2 test was performed to examine the differences of demographic variables between disclosure and non-disclosure group. All the significant variables were included in regression model as key covariates. Association between benefits/costs and HIV disclosure to family was examined using one-way analysis of variance (ANOVA). Finally, we explored the associations of perceived benefits/ costs with HIV disclosure to family by univariate and multivariate logistic regression. All statistical analyses were performed using SPSS 21.0. A p value of less than 0.05 was employed to indicate statistical significance.

Results

Socio-demographic characteristics and disclosure status

The sample socio-demographic characteristics were presented in Table 2. Among 1254 participants, 401(32.0%) disclosed to family, 703 (56.1%) did not disclose to family, and 150 (12.0%) didn’t answer any of the disclosure-related questions. The demographic variables (age, marital, job, ethnicity and HIV transmission model) that significantly differed between the two disclosure groups were included in the logistic regression analysis as covariates.

Table 2.

Socio-demographic characteristics by disclosure groups

		Disclosure to family members*
	Whole sample (n=1254)	Yes (n=401)	No (n=703)	p
Age in years (mean, SD)	38.4(8.3)	36.0(5.6)	37.8(5.9)	<.0001
Gender (male)	742(59.2)	232(57.9)	416(59.2)	0.688
Ethnicity
Han	899(71.7)	274(68.3)	520(74.1)
Others	354(28.3)	127(31.7)	182(25.9)	0.040
Religion (Yes)	85(6.8)	27(6.8)	54(7.8)	0.546
Rural residence (Living type)	170(93.3)	380(94.8)	663(94.7)	0.972
Job
No job	275(22.0)	89(22.3)	113(16.2)
Part-time job	429(34.4)	161(40.3)	242(34.6)
Full-time job	544(43.6)	150(37.5)	344(49.2)	0.001
Marital status
Currently married	950(78.2)	278(69.8)	577(85.9)
Currently unmarried	264(21.8)	120(29.2)	95(14.1)	<.0001
Monthly household incomes (CNY)
<2000	1060(85.3)	342(85.7)	580(83.7)
≥2000	182(14.7)	57(14.3)	113(16.3)	0.375
Education in years (mean, SD)	7.04(2.7)	7.08(2.6)	7.09(2.7)	0.938
The mode of HIV transmission
Sexual behavior	801(76.1)	256(72.3)	464(78.6)
Transfusion/needle Sharing	25(23.9)	98(27.6)	126(21.4)	0.027

^*Family members only included parents and siblings.

Perceived benefits/costs

The perceived benefits at both individual level (relief of stress relief: 10.74 vs 10.03, p<.0001; social support: 12.94 vs 12.08, p<.0001)) and interpersonal level (benefits to family members: 8.15 vs 7.50, p<.0001) were significantly different between two groups. But the difference of perceived costs between these two groups was not significant (Table 3).

Table 3.

Perceived benefits and costs by disclosure groups

			Disclosure to family members
	Variables	Whole sample (mean, SD)	Yes (mean, SD)	No (mean, SD)	P
Benefits
Individual	Pressure relief	10.29(1.94)	10.74(1.63)	10.03(2.05)	<.0001
	Social support	12.39 (2.64)	12.94 (2.36)	12.08(2.74)	<.0001
Interpersonal	Benefits for others	7.74(1.39)	8.15(1.20)	7.50(1.43)	<.0001
Costs
Individual	Stigma and confidentiality breaching	10.40(1.72)	10.48(1.57)	10.36(1.81)	0.202
Interpersonal	Family conflicts and concerns	11.18(1.42)	11.19(1.34)	11.18(1.47)	0.230

Association between HIV disclosure and perceived benefits/costs

Family disclosure was significantly associated with perceived benefits for both PLWH and family. And this association remained significant after controlling the key background at both individual level (relief of stress: OR 1.22, 95%CI=1.14, 1.30; aOR 1.24, 95%CI=1.15,1.33; social support: OR 1.14, 95%CI=1.08,1.19; aOR 1.14, 95%CI=1.08,1.20) and interpersonal level (OR 1.44, 95%CI=1.31,1.59; aOR 1.40, 95%CI=1.25,1.57). But family disclosure was not associated with perceived costs at either individual level (stigma and confidentiality breaching: OR 1.04, 95%CI=0.97,1.12; aOR 1.05, 95%CI= 0.97,1.13) or interpersonal level (family conflicts and concerns: OR 1.00, 95%CI=0.92,1.09; aOR 1.02, 95%CI= 0.92,1.13). (Table 4).

Table 4.

Univariate and multivariate analysis between benefits/costs and HIV disclosure to family members

Variables		cOR (95%CI)	aOR (95%CI)
Benefits
Individual	Stress relief	1.22(1.14,1.30) ***	1.24(1.15,1.33) ***
	Social support	1.14(1.08,1.19) ***	1.14(1.08,1.20) ***
Interpersonal	Benefits for others	1.44(1.31,1.59) ***	1.40(1.25,1.57) ***
Costs
Individual	Stigma and confidentiality breaching	1.04(0.97,1.12)	1.05(0.97,1.13)
Interpersonal	Family conflicts and concerns	1.00(0.92,1.09)	1.02(0.92,1.13)

^*P<0.05

^**p<0.01

^***p<0.001

cOR: Crude odds ratio

aOR: Adjusted odds ratio; odds ratios adjusted by significant background variables (age, marital, job, ethnicity and the mode HIV transmission)

Discussion

Consequence theory is one of commonly used conceptual frameworks for HIV disclosure, which posits that PLWH’s decision-making of disclosing HIV status is based on calculation of perceived benefits and costs of the disclosure. To the best of our knowledge, this is one of the first studies to examine this framework with both individual and interpersonal levels measures.

Consistent with previous studies (Dessalegn et al., 2019; Fifield et al., 2018; Yonah, Fredrick, & Leyna, 2014), the current study suggests that individual level benefits are associated with HIV disclosure to family. Given that mental health problems (depression, anxiety) are common among PLWH (Dejman et al., 2015; Liu et al., 2018; Radzniwan et al., 2016), relieving from stress and anxiety could be considered as a key factor in decision-making of HIV disclosure to family. At interpersonal level, perceiving benefits to family also might influence PLWH’s decisions. In Chinese culture, family is viewed as one of core values (Hu & Scott, 2016). Duties to family and filial piety are highlighted in the socialization of individuals. Therefore, PLWH are likely to disclose their HIV status in order to protect family’s health (e.g., educate family about HIV prevention, urge family to take HIV testing). The role of family value on HIV disclosure practice was reported in studies conducted in other Asian countries, such as Vietnam (Go et al., 2016). More studies are needed to further examine if benefits or duties to family overweighed perceived individual benefits or other considerations. Nevertheless, the findings suggest the needs to adequately consider family value in developing effective strategies for HIV disclosure counselling and interventions.

Interestingly, we found that perceived costs were not significantly associated with HIV disclosure to family. This result is inconsistent with previous studies (Derlega, Winstead, Greene, Serovich, & Elwood, 2002, 2004; Valle & Levy, 2009) and could not be well explained by the consequence theory which emphasized the critical roles of both perceived benefits and costs. Further studies are warranted to explore the impact of perceived costs on HIV disclosure to family.

The results need to be interpreted with cautions due to several limitations. First, majority of the sample was recruited from the rural areas in Southern China. Therefore, the results regarding family disclosure and their correlates might not be generalizable to other populations and settings. Second, the measurements assessing the perceived benefits and costs have limited number of domains. For several scales (e.g., perceived interpersonal cost), the Cronbach’s alpha was less than 0.70. Further modification and refinement are needed in measurement development to comprehensively assess the benefits and costs. Third, the cross-sectional data did not allow us to examine causal relationship between HIV disclosure and perceived benefits and costs. Future studies are needed to understand the process of decision-making by employing a longitudinal design.

Despite these limitations, this study is one of efforts to apply an existing conceptual framework on decision-making of HIV disclosure in context of disclosure to family among PLWH in rural China. We call for further empirical studies to explore the dynamics of decision-making of disclosure to family in order to inform effective intervention strategies to promote appropriate HIV disclosure practice to family and enhance health outcomes of PLWH.