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. Author manuscript; available in PMC: 2020 Aug 1.
Published in final edited form as: AIDS Care. 2019 Mar 17;31(8):994–1000. doi: 10.1080/09540121.2019.1595511

Mediator and Moderator Effects on the Relationship between HIV-Positive Status Disclosure Concerns and Health-Related Quality of Life

T C Laschober a,*, J M Serovich a, M J Brown b, J A Kimberly c, C M Lescano d
PMCID: PMC6559725  NIHMSID: NIHMS1524259  PMID: 30880426

Abstract

HIV-related stigma and the effect on quality of life is an on-going public health concern despite decades of education, prevention, and intervention efforts. The main purposes of this study were to examine the mediating role of four coping styles and the moderating role of gender on the relationship between HIV-positive status disclosure concerns and eight health-related quality of life outcomes. Data were collected from 346 women and men living with HIV. Results indicated that two coping styles—acquiring social support and positive reframing—mediated the negative relationship between disclosure concerns and health-related quality of life outcomes. There was no support for a moderated mediation. Interventions aimed at helping people living with HIV should focus on identifying and acquiring coping styles that transform perceptions of HIV-related stigma to support disclosure and improve health-related quality of life.

Keywords: HIV disclosure, seropositive, stigma, quality of life

Introduction

In 2016, an estimated 1.1 million Americans were living with HIV and almost 40,000 were newly diagnosed with HIV (U.S. Department of Health and Human Services, 2017). Compared to the height of the epidemic in the 1980s, where the estimated number of infections was 130,000, this represents a 30% decline in annual HIV infections over three decades. Despite advancements in the treatment, care, and prevention of HIV, HIV-related stigma continues to be a main driver of the epidemic (Mahajan et al., 2008). Stigma is based on negative social attitudes and perceptions of individuals engaging in “immoral” and “deviant” behaviors such as sexual promiscuity, men having sex with men, sex work, and injection drug use (Mahajan et al., 2008).

One aspect of HIV-related stigma is disclosure concerns, which is the fear of overt discrimination and stigmatization when one’s HIV-positive status becomes known (Marsicano et al., 2014; Stutterheim et al., 2011). A growing body of research shows a strong link between disclosure concerns and health-related quality of life (H-QoL) outcomes in people living with HIV (PLWH) including physical, mental, behavioral, and emotional outcomes as well as access to and engagement in care (Earnshaw & Chaudoir, 2009; Fekete, Williams, Skinta, & Bogisch, 2016; Katz et al., 2013; Nobre, Pereira, Roine, Sutinen, & Sintonen, 2017; Rueda et al., 2016).

What is currently lacking is an understanding of factors that explain or mediate the relationship between HIV disclosure concerns and H-QoL outcomes. The psychological mediation framework suggests that coping mediates the relationship between stress and health outcomes (Hatzenbuehler, 2009). Coping refers to behaviors and cognitive abilities to successfully deal with stressful situations (Matud, 2004). Stress can be equated to disclosure concerns due to fears of stigma and discrimination associated with HIV-positive status exposure.

Specific to PLWH, coping has been shown to be related to health outcomes (Moskowitz, Hult, Bussolari, & Acree, 2009). For instance, coping predicted depressive symptoms (Ball et al., 2002; Li, Hsieh, Morano, & Sheng, 2016) and physical and mental H-QoL (Kamen et al., 2012). Regarding the connection between stress and coping strategies, disclosure concern has been found to be correlated with disengagement coping (e.g., avoidance), engagement coping (e.g., problem solving) (Varni, Miller, McCuin, & Solomon, 2012), and negative coping skills (Li et al., 2016) such as substance use.

When discussing the potential mediating effects of coping on the relationship between disclosure concerns and H-QoL, it is important to consider gender disparities and gender-related experiences. Although women made up 19% of new HIV diagnoses and 23% of PLWH in the U.S. (CDC, 2018), their experiences are traditionally underrepresented in HIV-related research (Paudel & Baral, 2015). Yet, their experiences living with HIV tend to differ from those of men living with HIV. For instance, women compared to men face greater HIV-related stigma, rejection, discrimination, and disclosure concerns (Loutfy et al., 2012; Mrus, Williams, Tsevat, Cohn, & Wu, 2005; Paudel & Baral, 2015; Wagner, Hart, Mohammed, Ivanova, Wong, & Loutfy, 2010). Furthermore, research has shown significant relationships between disclosure concerns and both health worries and sexual functioning for women but not for men (Fekete et al., 2016).

Perhaps not surprising then, gender differences have been found in H-QoL with women reporting less H-QoL than men (Chandra et al., 2009; Mrus et al., 2005; Vigneshwaran, Padmanabhareddy, Devanna, & Alarez-Uria, 2013). However, it is worth noting that one study showed greater H-QoL among women than men (Peltzer & Phaswana-Mafuya, 2008) while another found no gender differences (Ruiz-Perez et al., 2005). Fekete et al. (2016) further found that women compared to men reported greater life satisfaction.

It is unclear what accounts for divergent findings. Drawing on the psychological mediation framework (Hatzenbuehler, 2009), it may be that gender-related differences in living with HIV, related stress, and coping styles provide some answers. Women are more likely than men to rely on positive emotion-focused coping such as seeking social support and accepting help from family and friends (Kelly, Tyrka, Price, & Carpenter, 2008; Matud, 2004; Varni, Miller, McCuin, & Solomon, 2012; Vosvick, Martin, Smith, & Jenkins, 2010), which may buffer disclosure concerns and related negative H-QoL outcomes. In contrast, men are more likely to engage in problem-focused and negative emotion-focused coping such as avoidance and detachment (Matud, 2004; Miller & Kirsch, 1987).

Gender differences in coping styles may be related to gender socialization, or socially acceptable behavior or attitudes based on gender roles (Basow, 1992). For example, social norms suggest that it is more acceptable for women than for men to share concerns with others and seek and receive support. Thus, women may perceive and draw on more available social support than men. Stereotypically, men are supposed to be in control of their emotions and solve problems on their own. As a result, they may use less social support and more avoidance coping strategies as a way to hide emotions and evade having to react to or solve stressful situations compared to women.

Taken together, the goals of the current study were to examine the mediating role of coping strategies and the moderating role of gender on the relationship between disclosure concerns and H-QoL in PLWH. The following hypotheses (Hs) were tested: H1—Coping styles including acquiring social support, positive reframing, mobilizing to acquire help, and passive appraisal will mediate the negative relationship between disclosure concerns and H-QoL outcomes. H2—Gender will moderate the mediation effect such that the indirect effect will be stronger for women than for men. That is, adaptive emotion-focused coping will have a stronger indirect effect on the relationship between disclosure concerns and H-QoL outcomes for women than for men.

Materials and Methods

Design and Procedure

Data were from the baseline assessment of a longitudinal disclosure of HIV to family intervention project that was conducted in a large US Southeast metropolitan area between 2014 and 2017. Eligible participants had to be living with HIV, 18 years of age or older, English-speaking, and plan on living in the area for at least one year. Because the larger project was a disclosure intervention, participants also had to be interested in learning more about disclosing to family, have at least one family member who did not yet know about their HIV-positive status, and be interested in disclosing their status to at least one family member.

Recruitment strategies included advertisements with local AIDS service organizations, local newspapers, and at HIV-related venues. At baseline, 346 eligible women and men living with HIV provided data using audio computer-assisted self-interviewing (ACASI) software. Data collection took an average of 50 minutes to complete and participants received $50 compensation for their time. Informed consent was obtained prior to data collection. All procedures were approved by the University of South Florida Institutional Review Board.

Measures

Health-Related Quality of Life.

The H-QoL measure (QOL 601–2) developed by the AIDS Clinical Trials Group (ACTG) was used to measure functioning and well-being in PLWH (ACTG, 1999). The measure consisted of eight subscales including general health (2 items on 5-point Likert scale); physical functioning (4 items on 3-point Likert scale), role functioning (2 items on 3-point Likert scale), social functioning (2 items on 5-point and 6-point Likert scale), cognitive functioning (3 items on 6-point Likert scale); pain management (2 items on 5-point and 6-point Likert scale); mental health (3 items on 6-point Likert scale), and vitality/energy (2 items on 6-point Likert scale). Subscales were created in accordance with the ACTG scoring manual (ACTG, 1999). In brief, subscales were first summed across the corresponding items. Subscales were then transformed to a 0 to 100 scale to allow for comparisons among subscales with different response categories. The overall H-QoL scale was created by calculating the mean across subscales.

Disclosure concerns.

A 10-item subscale from the HIV Stigma Scale was used to assess concern related to HIV disclosure (Berger, Ferrans, & Lashley, 2001). An example item was “As a rule, telling others has been a mistake.” Responses were recorded on a 4-point Likert-type scale with higher values indicating greater disclosure concerns. The subscale was created by summing responses across the 10 items.

Coping styles.

The mediator – coping style – was examined using a shortened version of the 29-item Family Crisis Oriented Personal Evaluation Scales (F-COPES) (McCubbin, Olson, & Larsen, 1991). F-Copes measures internal and external coping styles using five subscales—Acquiring social support (9 items), positive reframing (8 items), mobilizing family to acquire and accept help (4 items), passive appraisal (4 items), and seeking spiritual support (4 items). The shortened version omitted spiritual support items. Thus, the first four subscales were utilized in this study. Items were scored on a 5-point Likert-type scale with higher scores representing greater coping. Subscales were created by summing responses across corresponding items.

Gender.

The moderator – gender – was assessed with the question whether the participant self-identified as male, female, or “other”. All participants selected either male or female.

Control variables.

Six control variables were included in all analyses. Race was coded 0 = White, 1 = Racial Minority and Hispanic ethnicity was coded 1 = not Hispanic and 0 = Hispanic. Sexual identity was coded 0 = gay, lesbian, or bisexual, and 1 = straight. Continuous control variables included years since diagnosis, education level ranging from 1 = 8th grade or less to 7 = post-graduate degree, and income ranging from 1 = $0 - $500 to 5 = over $2,000 per month.

Data Analyses

Descriptive statistics were used to examine participants’ demographic characteristics and key variables. Gender differences in demographic characteristics and key variables were assessed using chi-square tests for categorical variables and F-tests for continuous variables. Both hypotheses were tested using Hayes’ (2018) PROCESS 3.1 macros for SPSS. Separate analyses were run for each coping style and H-QoL outcome. Bootstrap confidence intervals for indirect effects were based on 10,000 random samples. Coefficients and indirect effects are significant if the 95% confidence interval (CI) does not include zero.

To test H1, mediation analyses were conducted in two steps using the PROCESS macro for Model 4. Analyses first included each coping style as a separate mediator (M), disclosure concerns as independent variable (X), and overall H-QoL as dependent variable (Y). When a coping style significantly mediated the relationship between disclosure concerns and overall H-QoL outcome, additional mediation analyses were run for each subscale of H-QoL. The overall H-QoL variable was run first to reduce the risk of making a Type I error (i.e., falsely finding a significant relationship). To test H2, moderated mediation analyses were run using the PROCESS macro for Model 59 and included all coping styles (M), disclosure concerns (X), all H-QoL outcomes (Y), and gender as moderator (W).

Results

Participants’ Demographic Characteristics

About half of participants were male (55.2%) and half were female (44.8%). As shown in Table 1, participants came from diverse demographic backgrounds. Their mean age was 45.5 years and participants had been living with HIV for an average of 12.8 years. The majority of participants identified as racial minorities (63.3%), non-Hispanic (88.1%), and straight (51.7%). Regarding level of education, 28.6% were high school or GED graduates and 28.6% had some college experience. Approximately seven in ten participants (71.5%) earned $1,000 per month or less. Regarding gender differences, more men than women reported being White, Hispanic, gay or bisexual, having more formal education, and earning higher monthly incomes.

Table 1.

Demographic Characteristics Overall and by Gender

Overall Males Females χ2 or F P
(N = 346) (N = 191) (N = 155)
Age [M, (SD)] 45.5 (11.3) 45.0 (12.2) 46.0 (10.2) .65 .420
Years diagnosed [M, (SD)] 12.8 (8.6) 12.4 (9.5) 13.3 (7.3) 1.12 .290
Racial Minority [n, (%)] 216 (63.3) 96 (51.6) 120 (77.4) 24.25 .000
Non-Hispanic [n, (%)] 303 (88.1) 160 (84.7) 143 (92.3) 4.69 .030
Sexual ID, Straight [n, (%)] 178 (51.7) 52 (27.5) 126 (81.3) 98.63 .000
Level of Education [n, (%)] 30.99 .000
 No high school/GED 77 (22.6) 26 (13.7) 51 (33.3)
 High school degree/GED 98 (28.6) 49 (25.9) 49 (32.0)
 Some college experience 98 (28.6) 64 (33.9) 34 (22.2)
 College degree 69 (20.2) 50 (26.5) 19 (12.5)
Monthly Income [n, (%)] 26.25 .000
 up to $500 110 (32.0) 52 (27.5) 58 (37.4)
 $501-$1,000 136 (39.5) 62 (32.8) 74 (47.7)
 $1,001-$1,500 49 (14.3) 36 (19.0) 13 (8.4)
 $1,501 - $2,000 30 (8.7) 24 (12.7) 6 (3.9)
 Over $2,000 19 (5.5) 15 (7.9) 4 (2.6)
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Descriptive Statistics of Key Variables

Table 2 displays the descriptive statistics of disclosure concerns, coping strategies, and H-QoL outcomes. Males and females did not significantly differ in their responses regarding disclosure concerns and coping strategies. However, gender differences were found in H-QoL outcomes with more males than females reporting greater physical health, cognitive functioning, and pain management.

Table 2.

Descriptive Statistics of Key Variables Overall and by Gender

Overall Min-Max Males Females F p
M (SD) M (SD) M (SD)
Disclosure Concerns 31.19 (5.40) 15–40 30.73 (5.54) 31.76 (5.18) 3.13 .078
Coping Strategies
 Acquire social support 26.33 (7.28) 9–45 26.34 (7.56) 26.32 (6.94) .00 .981
 Positive refraining 31.23 (5.75) 13–45 31.47 (5.76) 30.95 (5.74) .69 .406
 Mobilize to acquire help 13.35 (3.77) 4–20 13.25 (3.80) 13.48 (3.74) .34 .560
 Passive appraisal 12.65 (3.55) 4–20 12.93 (3.76) 12.32 (3.25) 2.54 .112
H-QOL, overall 59.93 (19.75) 0–100 62.41 (19.44) 56.87 (19.76) 6.86 .009
 General health 52.24 (26.88) 0–100 54.12 (26.69) 49.92 (27.01) 2.10 .148
 Physical health 64.23 (28.61) 0–100 69.44 (28.35) 57.82 (27.70) 14.66 .000
 Role functioning 69.73 (29.72) 0–100 71.34 (29.46) 67.74 (30.01) 1.25 .264
 Social functioning 66.70 (26.01) 0–100 68.82 (25.13) 64.09 (26.91) 2.85 .092
 Cognitive functioning 65.70 (22.02) 0–100 67.89 (21.52) 63.01 (22.40) 4.24 .040
 Pain management 58.67 (28.31) 0–100 62.30 (27.61) 54.19 (28.60) 7.15 .008
 Mental functioning 53.43 (22.65) 0–100 54.97 (23.16) 51.53 (21.93) 1.99 .160
 Vitality/Energy 48.73 (21.55) 0–100 50.42 (22.61) 46.65 (20.04) 2.64 .105
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Mediation Results

Table 3 presents the mediation results, controlling for time since diagnosis, race, ethnicity, sexual orientation, education, and income. An examination of the indirect effects supported the hypothesis that coping, specifically acquiring social support and positive reframing, mediates the negative relationship between disclosure concerns and H-QoL outcomes. That is, greater acquisition of social support and greater positive reframing lessened the negative relationship between disclosure concerns and H-QoL overall and for each H-QoL subscale. There were two exceptions: acquiring social support did not mediate the relationship between disclosure concerns and pain management or mental functioning.

Table 3.

Mediation Analyses Results

Bootstrap Indirect Effects Effect SE LLCI ULCI
Disclosure concerns → Acquire social support → Overall H-QoL −0.10 0.05 −0.21 −0.02
 Disclosure concerns → Acquire social support → General health −0.12 0.06 −0.26 −0.02
 Disclosure concerns → Acquire social support → Physical health −0.10 0.06 −0.25 −0.00
 Disclosure concerns → Acquire social support → Role functioning −0.11 0.06 −0.26 −0.00
 Disclosure concerns→ Acquire social support → Social functioning −0.14 0.07 −0.30 −0.03
 Disclosure concerns → Acquire social support → Cognitive functioning −0.13 0.06 −0.26 −0.03
 Disclosure concerns → Acquire social support → Pain management −0.09 0.06 −0.23 0.01
 Disclosure concerns → Acquire social support → Mental functioning −0.07 0.04 −0.17 0.01
 Disclosure concerns → Acquire social support → Vitality/energy −0.07 0.04 −0.17 −0.00
Disclosure concerns → Positive reframing → Overall H-QoL −0.23 0.08 −0.41 −0.09
 Disclosure concerns → Positive reframing → General health −0.32 0.12 −0.57 −0.12
 Disclosure concerns → Positive reframing → Physical health −0.25 0.10 −0.46 −0.08
 Disclosure concerns → Positive reframing → Role functioning −0.22 0.09 −0.44 −0.07
 Disclosure concerns→ Positive reframing → Social functioning −0.23 0.09 −0.45 −0.08
 Disclosure concerns → Positive reframing → Cognitive functioning −0.19 0.08 −0.37 −0.06
 Disclosure concerns → Positive reframing → Pain management −0.18 0.08 −0.35 −0.05
 Disclosure concerns→ Positive reframing → Mental functioning −0.24 0.09 −0.43 −0.09
 Disclosure concerns → Positive reframing → Vitality/energy −0.21 0.08 −0.39 −0.08
Disclosure concerns → Mobilize to acquire help → Overall H-QoL −0.03 0.03 −0.10 0.01
Disclosure concerns → Passive appraisal → Overall H-QoL −0.01 0.02 −0.08 0.02
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Note. LLCI = Lower Limit 95% Confidence Interval. ULCI = Upper Limit 95% Confidence Interval. Controlling for time since diagnosis, race, ethnicity, sexual identity, education, and income.

Moderated Mediation Results

Contrary to expectations, there were no statistically significant (p < .05) gender moderated mediation effects. That is, there was no evidence that the indirect effect was stronger for women compared to men.

Discussion

This study was the first to examine the mediating effect of coping on the relationship between disclosure concerns and H-QoL in PLWH. As suggested by the psychological mediation framework (Hatzenbuehler, 2009), better coping skills, particularly acquiring social support and positive reframing, attenuated the negative relationship between disclosure concerns and all H-QoL outcomes (with the exception of pain management and mental functioning related to acquiring social support). In contrast, coping styles including mobilizing to acquire help from the community (e.g., agencies, therapists, doctors) instead of family and friends and passive appraisal (e.g., letting things happen, feeling helpless, avoiding situations) did not mediate the relationship between disclosure concerns and H-QoL outcomes.

Acquiring social support refers to the perceived ability to gain support from family and friends during difficult times. Positive reframing is an active coping style such that an individual deals with demanding or stressful situations by shifting their perception to see the situation in a more positive light (McCubbin, Olson, & Larsen, 1991). These findings suggest that perceiving that family and friends are available to provide support during difficult times and being able to see things in a more positive light acts as a buffer against concerns over disclosing ones HIV-positive status. Acquiring social support and positive reframing coping styles may make challenging situations and experiences such as dealing with HIV-related stigma, stress, and disclosure appear more manageable.

Wang, Whitson, Anicich, Kray, and Galinsky (2017) suggest that stigmatized individuals can be taught tools to face and overcome stigma. For example, PLWH may experience a shift in perceptions when they identify and understand benefits of disclosure such as increased social support, better access to care, stress relief, and reduced transmission risk (Gaskins et al., 2011; Obermeyer, Baijjal, & Pegurri, 2011; Smith, Rossetto, & Peterson, 2008). According to the consequences of HIV disclosure theory (Serovich, 2001), individuals contemplating disclosure assess the pros and cons of disclosing. Disclosure is more likely when the benefits outweigh the risks. Perceived risks might include fear of stigmatization (Stutterheim et al., 2011), loneliness and rejection (Serovich, 2001), and abuse or violence (Brown, Serovich, & Kimberly, 2016).

Contrary to expectations, results did not provide support for a gender-moderated mediation. That is, coping styles as mechanisms for explaining the negative relationship between disclosure concerns and H-QoL outcomes did not differ for females and males. This suggests that acquiring social support and positive reframing is an equally important buffer for males and females living with HIV in the negative relationship between disclosure concerns and H-QoL outcomes. The lack of gender-moderated mediation is surprising given that women and men tend to differ in their experiences linked to HIV-related stigma, disclosure concerns (Loutfy et al., 2012; Mrus et al., 2005; Paudel & Baral, 2015; Wagner et al., 2010), H-QoL outcomes (Chandra et al., 2009; Mrus et al., 2005; Vigneshwaran et al., 2013), and coping styles (Kelly et al.,2008; Matud, 2004; Varni et al., 2012; Vosvick et al., 2010).

It may be that as gender roles, gender expectations, and gender socialization appear to be changing over the past few decades (Felsten, 1998), coping styles may also become less stereotypical for women and men. This speculation may explain findings in the current study that there were no significant gender differences in any of the coping styles. However, it is also possible that living with HIV, coping with HIV-related stigma, and dealing with generally negative societal attitudes toward HIV may shape coping styles differently in PLWH compared to HIV-negative individuals. Further research in this area would deepener our understanding of the interaction between living with HIV, adaptive coping styles, and gendered experiences.

Another factor that may account for the lack of moderated mediation may be the measures selected in this study to assess H-QoL and coping. Both of these variables can be assessed with a number of measures. For example, Fekete et al. (2016) used the HIV-AIDS-Targeted Quality of Life Instrument whereas in the current study the H-QoL measure developed by the AIDS Clinical Trials Group (ACTG) was utilized. Additionally, the current study used the Family Crisis Oriented Personal Evaluation Scales (F-COPES) (McCubbin, Olson, & Larsen, 1991) whereas other studies relied on the Response to Stress Questionnaire (Varni et al., 2012). More research with different measures is needed to ascertain whether moderated mediation results change or remain non-significant depending on selected measures.

Limitations of this study need to be considered when interpreting the findings. The cross-sectional design limits discussion of findings to the association between HIV-positive status disclosure concerns, H-QoL, and coping styles rather than explain cause-and-effect among the variables. Additionally, the non-random sample that was drawn from one large US Southeast metropolitan area and the demographic characteristics of participants may limit generalizability of the findings to other PLWH. For example, females compared to males in the current study differed in terms of their race, ethnicity, sexual orientation, income, and education, which may be more characteristic of participants in the current study than men and women living with HIV in different parts of the country. It may also be that individuals who live in different geographical areas and who have lived with HIV for a longer period of time have different experiences (e.g., disclosure concerns, H-QoL, coping) from individuals who are newly diagnosed with HIV and those living in other parts of the US. However, it is worth noting that all of the demographic characteristics were controlled for in the mediation and moderated mediation analyses.

Examining the mediating effects of coping styles and the moderating effects of gender on the negative relationship between disclosure concerns and H-QoL is important in the effort to reduce and eliminate the long-lasting effects of stigma on H-QoL outcomes. Findings from this study showed that two coping styles—acquiring social support and positive reframing—buffer the negative relationship between disclosure concerns and H-QoL outcomes. Additionally, findings indicated that gender did not moderate this mediated relationship. Programs and interventions aimed at assisting PLWH cope with disclosure concerns, and perhaps HIV-related stigma more generally, and improving their H-QoL should focus on teaching PLWH how to transform negative to more positive perspectives and helping them identify potential family members and friends whom they belief can be relied on for social support during difficult times.

Acknowledgements

This study was supported by funding from the National Institute of Mental Health under Grant R01MH097486. We would like to thank the women and men who participated in this study.

Footnotes

Disclosure Statement

No potential conflict of interest was reported by the authors.

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