Quality of Life and Its Association With HIV-Related Stigma Among People Living With HIV in Kerman, Iran: A Cross-Sectional Study : Journal of the Association of Nurses in AIDS Care

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Research Article

Quality of Life and Its Association With HIV-Related Stigma Among People Living With HIV in Kerman, Iran: A Cross-Sectional Study

Malekmohammadi, Neda MSc; Khezri, Mehrdad MSc; Rafiee Rad, Ali Ahmad PhD; Iranpour, Abedin PhD; Ghalekhani, Nima PhD; Shafiei bafti, Mehdi MD; Zolala, Farzaneh PhD; Sharifi, Hamid PhD*

Author Information
Journal of the Association of Nurses in AIDS Care: November/December 2022 - Volume 33 - Issue 6 - p 605-612
doi: 10.1097/JNC.0000000000000362
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Abstract

Background

People living with HIV (PLHIV) experience multiple adversities, including diminished quality of life (QoL) and mental health, and increased stigma, poverty, depression, and substance use (Gooden et al., 2022). QoL is a multidimensional concept that reflects an individual's perception of their physical, emotional, social, and cognitive health (Jackson et al., 2010). The World Health Organization (WHO) defines QoL as understanding one's position in life within the framework of cultural and value systems in which they live and regarding their goals, expectations, standards, and attitudes (Jadhav et al., 2017). Moreover, global reports from The Joint United Nations Programme on HIV/AIDS (UNAIDS) showed that by the end of 2020, 37.7 million people were living with HIV, 1.5 million people were new cases, and 680,000 people died due to AIDS-related diseases (UNAIDS, 2020). In 2019, it is estimated that there were more than 59,000 PLHIV in Iran (Jahromy et al., 2021). Although the life expectancy of PLHIV has improved with the availability of antiretroviral therapy, PLHIV continue to experience a low level of QoL (Arjun et al., 2017).

As a complex social process of prejudice and negative attitudes, stigma has disproportionately affected PLHIV (Rasoolinajad et al., 2018). HIV-related stigma has two directions, internal stigma and external stigma. Internal stigma (i.e., self-stigma) is defined as negative feelings and beliefs that PLHIV have about themselves (Molina et al., 2018). External stigma is defined as stigmatizing behaviors directed toward PLHIV or prejudice and discrimination by others (P. Chi et al., 2014). Evidence demonstrates that stigma negatively affects the QoL and all aspects of the physical and mental health of PLHIV. These individuals experience stigma through social exclusion, discrimination, shame, and the threat of disclosure of their illnesses (Rasoolinajad et al., 2018).

In Iran, HIV-related stigma remains a major public health concern and continues to contribute to the HIV epidemic in the country (Tavakoli et al., 2020). Studies demonstrate that HIV-related stigma and discrimination prevent PLHIV from accessing health care services, such as antiretroviral therapy (Kalan et al., 2019; Rahmati-Najarkolaei et al., 2010). Despite the growing body of research on HIV-related stigma and outcomes, such as HIV testing behavior and services (Chi et al., 2021), the association of QoL and stigma is less understood, particularly in the context of a developing country like Iran. Although a previous study examined the association of stigma with QoL and mental health among PLHIV in Tehran (Rasoolinajad et al., 2018), our understanding of the association between HIV-related stigma and QoL stratified by the type of stigma remains limited. Therefore, we aimed to assess the association of QoL with internal and external HIV-related stigma among PLHIV in Kerman and Sirjan, in southeast Iran.

Methods

Study Design and Setting

Using a convenience sampling method, this cross-sectional study included 104 PLHIV (of 109 approached individuals; response rate = 95.4%) who presented to either of two voluntary counseling and testing centers (VCT) in Kerman and Sirjan, located in the southeast of Iran, from July 2018 to January 2019. The inclusion criteria were a confirmed diagnosis of HIV (i.e., PLHIV who were receiving services at the VCT and diagnosed previously by HIV testing), age of 18 years and older, and able to consent to participate in the study. The study sites were the two VCT locations, which were under the supervision of Kerman University of Medical Sciences. Recruitment procedures and interviews were conducted at these locations.

Data Collection

After explaining the objective of the study, informed consent was obtained from participants. Participants were interviewed using the HIV/AIDS-Targeted QoL (HAT-QoL) and stigma questionnaires in a private room by a trained interviewer. Each interview lasted an average of 30–40 min. The HAT-QoL questionnaire was developed by Holmes and Shea in 1995 to assess the QoL of PLHIV (Holmes & Shea, 1998). The questionnaire was developed in English. The translation process from the original language (English) to the target language (Persian) was performed by the recommended forward–backward method. Validity and reliability of the questionnaire were evaluated and were translated into Persian by two independent persons. The two translations were then compared and a final version was drafted. This version was translated back into English to compare with the original version. To determine the face validity, legibility, clarity, and cultural fit of the prototype of the questionnaire, a face-to-face interview was conducted with 12 members of the target group, and their proposed changes were reviewed and included in the questionnaire. Cronbach's alpha was used to assess the reliability of the questionnaire.

The HAT-QoL questionnaire consists of 42 items divided into nine dimensions: overall activity (n = 7), sexual QoL (n = 3), confidentiality QoL (n = 5), health worries (n = 5), financial worries (n = 4), HIV mastery (n = 3), life satisfaction (n = 8), medication concerns (n = 4), and provider trust (n = 3). The items are scored on a 5-point Likert scale, including always, more often, sometimes, rarely, and never. Only one option is recorded for each question that corresponds to the best description in the past four weeks. The score is calculated based on responses from 1 to 5 (one: the worst state and five: the best state). Scores in each domain are indexed with a weight of 0–100 (Soares et al., 2015).

Information regarding internal and external stigma was also collected using a standard questionnaire. Internal and external stigma were measured using an instrument developed by UNAIDS that was translated to Farsi by SeyedAlinaghi et al. (SeyedAlinaghi et al., 2013). The internal stigma instrument included 22 questions on experiences and feelings concerning different types of internal stigma in the past 12 months coded as yes versus no. The external stigma instrument included 11 questions on experiences of external stigma measured by frequency of occurrence in the past 12 months (0 = never and once, 1 = several times and often). Therefore, the internal stigma scale ranged from 0 to 22, and the external scale ranged from 0 to 11. All demographic variables were categorical and included age, marital status, education, sex, duration of living with HIV, job status, having child, and mode of infection. The demographic variables were collected using a questionnaire.

Statistical Analysis

In the QoL questionnaire, a higher QoL score indicates a higher level of QoL. Higher stigma scores also show greater HIV stigma experienced by participants. The normality of the quantitative data was examined using the Kolmogorov–Smirnov test and the results showed that all of them had a normal distribution. Descriptive statistics (mean, SD) were used to describe quantitative variables, whereas qualitative variables were presented as frequency and percentage. The factors associated with the QoL were examined using bivariable and multivariable linear regression models. Total score for QoL was the dependent variable, and sociodemographic, internal, and external stigma were independent variables. Variables with p values less than 0.2 in the bivariable model were included in the multivariable model to determine the variables associated with the QoL (Dohoo et al., 2012). The backward elimination method was applied to reduce the final model using the partial F-test. Statistical analysis was performed using SPSS software version 22, and p values ≤ 0.05 were considered statistically significant.

Ethics Approval and Consent to Participate

All procedures involving human participants were in accordance with the ethical standards of the Ethics Committee of Kerman University of Medical Sciences (ethics number IR.KMU.REC.1397.219) as well as the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all participants.

Results

Participants Characteristics

Of 104 participants in the study, 60.6% (n = 63) were male and 93.3% (n = 97) were aged 30 years or more. Approximately half of the participants (n = 49, 47.1%) were married, and 38.5% (n = 40) had a high school education or higher. Most participants had at least five-year history of living with HIV. Among the participants, 36.5% (n = 38) were infected through unprotected sex and 28.8% (n = 30) were infected through injections (Table 1).

Table 1. - Demographic Characteristics of People Living With HIV in Kerman, Iran, 2018-2019.
Variables Frequency Percentage
Total 104 100
Sex
 Male 63 60.6
 Female 41 39.4
Age, years
 ≤30 7 6.7
 >30 97 93.3
Marital status
 Single 27 26.0
 Married 49 47.1
 Divorced or widowed 28 26.9
Level of education
 Less than high school 64 61.5
 High school and above 40 38.5
Job status
 Unemployment 53 51.0
 Employed 51 49.0
Have a child
 No 38 36.9
 Yes 66 63.5
Duration of living with HIV
 ≤5 years 35 33.7
 >5 years 69 66.3
Mode of infection
 Needle/syringe sharing 30 28.8
 Sexual contact 38 36.5
 Other a 36 34.7
Internal stigma score, mean (SD) 10.7 (5.2)
External stigma score, mean (SD) 3.1 (2.9)
aOther items include blood and blood products, mother to child, tattoos and sharp instruments, and unanswered.

The internal consistency of the nine domains of the QoL questionnaire was calculated using Cronbach's alpha and summarized in Table 2. The mean Cronbach's alpha of the facets in all nine domains was more than 0.6, indicating good reliability. The mean Cronbach's alpha for the whole questionnaire was 0.96. The provider trust domain showed the highest internal consistency with a Cronbach's alpha of 0.96, whereas the HIV mastery domain had the lowest internal consistency with a Cronbach's alpha of 0.60.

Table 2. - Mean, Standard Deviation, 95% Confidence Intervals, and Cronbach's Alpha Dimensions of Quality-of-Life Questionnaire (HAT-QOL) Among People Living With HIV in Kerman, Iran, 2018-2019.
Domains Mean (SD) 95% CI Cronbach's Alpha
Overall function 56.0 (27.5) 50.8, 61.2 0.88
Sexual function 54.6 (21.5) 50.8, 58.7 0.65
Confidentiality concerns 36.6 (28.4) 33.1, 44.2 0.7
Health worries 33.5 (21.4) 29.5, 37.4 0.67
Financial worries 27.5 (23.9) 23, 31.8 0.65
HIV mastery 48.4 (18.7) 44.8, 52 0.60
Life satisfaction 51.8 (28.1) 46, 56.8 0.95
Medication Concerns 75.8 (19.7) 71.4, 79.3 0.62
Provider trust 84.8 (23.3) 81.8, 91.1 0.96
Total score 52.5 (13.9) 50.1, 55.5 0.75
Note: CI, confidence interval.

Quality of Life and Stigma Scores

The overall mean (SD) scores of QoL, internal stigma, and external stigma was 52.5 (13.9), 10.7 (5.2), and 3.1 (2.9), respectively. In assessing the QoL dimensions, the lowest scores were on the financial worries subscale (27.5), health worries subscale (33.5), and confidentiality concerns subscale (36.6). The highest score was related to the dimensions of provider trust (84.8), medication concerns (75.8), and overall activity (56.0; Table 2).

Factors Associated with Quality of Life

The results of bivariable linear regression showed a significant association between QoL and sex (p = .005), marital status (p < .001), level of education (p = .01), duration of living with HIV (p = .03), mode of transmission (p = .001), having children (p = .01), job status (p = .01), internal stigma (p < .001), and external stigma (p < .001). In this regard, male sex versus female sex (B = 7.7; 95% confidence intervals [CIs]: 2.3–13.1), being married versus single (B = 12.6; 95% CI: 6.8–18.5), high school education or higher versus lower education levels (B = 6.8; 95% CI: 1.3–12.2), infection through sexual contact versus unsafe injection (B = 10.4; 95% CI: 4.02–14.8), and having children (B = 6.8; 95% CI: 1.3–12.3) were associated with a higher QoL. Living with HIV for more than five years versus a history of less than five years (B = −0.59; 95% CI: −11.6, −0.33), being employed (B = −6.6; 95% CI: −11.9 to −1.3), a higher external stigma score (B = −2.7; 95% CI: −3.5 to −2.0), and a higher internal stigma score (B = −1.5; 95% CI: −2 to −1.1) were associated with a lower QoL (Table 3).

Table 3. - Bivariable and Multivariable Linear Regression Analysis of Quality of Life Among People Living With HIV in Kerman, Iran, 2018–2019.
Variables Crude Adjusted
B 95% CI p-value B 95% CI p-value
Sex
 Female Reference
 Male 7.7 2.3, 13.1 .005
Age, years
 ≤30 Reference
 >30 −8.7 −19.4, 2.03 .1
Marital status
 Single Reference Ref. -- --
 Married 12.6 6.8, 18.5 <.001 2.4 −4.8, 9.7 .5
 Divorced or widowed 5.4 −3.1, 14.1 .2 6.9 0.7, 13.1 .02
Level of education
 Less than high school Reference
 High school or above 6.8 1.3, 12.2 .01
Job status
 Unemployment Reference Ref. -- --
 Employed −6.6 −11.9, −1.3 .01 −5.9 −9.7, −2.1 .003
Duration of living with HIV
 ≤5 Reference
 >5 −0.59 −11.6, −0.33 .03
Mode of transmission
 Unsafe injection Reference
 Sexual contact 10.4 4.02, 14.8 .002
 Other 11.2 4.7, 17.7 .001
Having children
 No Reference
 Yes 6.8 1.3, 12.3 .01
Internal stigma score −1.5 −2, −1.1 <.001 −1.1 −1.5, −0.6 <.001
External stigma score −2.7 −3.5, −2 <.001 −1.9 −2.6, −1.1 <.001
Note: CI, confidence interval.

The multivariable regression model showed that the PLHIV who experienced higher external (B = −1.9; 95% CI: −2.6 to −1.1) and internal (B = −1.1; 95% CI: −1.5 to −0.6) stigma scores had lower QoL. The QoL was higher in divorced and widowed patients versus single ones (B = 6.9; 95% CI: 0.7–13.1), and those who were employed (B = −5.9; 95% CI: −9.7 to −2.1) also had a lower QoL (Table 3).

Discussion

Our findings suggest that the QoL remains low among PLHIV in Iran. The QoL domains with the lowest scores were financial worries, health worries, and confidentiality concerns. Moreover, the highest QoL was observed in the dimensions of provider trust, medication concerns, and overall activity. The QoL score was lower among PLHIV who experienced higher external and internal stigma scores and those who were employed, whereas the QoL score was higher in divorced or widowed participants.

These findings are consistent with the findings of studies conducted in Brazil in northwestern Sao Paulo (2018), southwestern Minas Gerais (2018), and Pelotas (2017), in which the lowest scores were related to the domains of financial and confidentiality concerns and the highest scores were related to provider trust and drug concerns (Caliari et al., 2018; Miyada et al., 2019; Silveira et al., 2016). These findings are comparable to studies in other international settings. For example, evidence suggests that financial worries may be explained by the low purchasing capacity of the study participants, considering that a marginalized socioeconomic level may negatively affect the individual's life and survival (Dutra et al., 2019). Evidence suggests that programs should be designed to reduce financial worries and contribute to financial independence as employment, beyond its purpose as a financial source, helps reduce the stress associated with living with HIV and improve individuals' QoL (Passos & Souza, 2015). Regarding confidentiality concerns, similar results were reported, with PLHIV indicating that they might not seek health services because of the fear of discrimination resulting from the stigma (Tucker, 2015). As a result, many PLHIV adopt a life of duplicity in which they keep their conditions a secret from friends and family and neglect self-care. (Soares et al., 2015). A high score in the QoL domains of trust in service provider and medication concerns may also indicate that PLHIV have good relationships with health care providers and may be related to the health care providers' attention to and respect for their patients, which supports trust, communication, and medication adherence (Caliari et al., 2018; Dutra et al., 2019).

Our estimate for the level of QoL (52.5) was lower than estimates for QoL among PLHIV in other studies (e.g., in Ghana (71), Nepal (80), Tanzania (72), and China (63). (P. Chi et al., 2014; Giri et al., 2013; Kalan et al., 2019; Osei-Yeboah et al., 2017; Parcesepe et al., 2020; Wang et al., 2021). This finding suggests the need for programs to address low QoL among PLHIV in Iran. For example, a study suggested that increasing social support can serve as a powerful approach in improving the QoL among PLHIV. Moreover, psychosocial interventions, reducing HIV-related stigma, and addressing psychological disorders have been suggested for improving the QoL of PLHIV (Rasoolinajad et al., 2018; Shrestha et al., 2019). Evidence also suggests periodic assessment of the QoL in PLHIV for comprehensive care and improving the signs and symptoms of the disease (Bello & Bello, 2013). QoL data can be used to identify disparities among this population and to help inform interventions that include long-term care and ART adherence. Indeed, a recent study suggested that in addition to the UNAIDS 90-90-90 targets, programs should ensure that 90% of people with viral load suppression have a good health-related QoL (Lazarus et al., 2016).

Our results demonstrate that the internal and external stigma scores were 10.7 and 3.1, respectively. These estimates are also comparable with the global literature. For example, internal stigma scores in studies conducted in Morocco, Canada, and Namibia were lower than our estimates in PLHIV in Iran (Angula et al., 2015; Loutfy et al., 2012; Moussa et al., 2021). However, estimates for internal stigma were higher in other studies in Iran and China compared with estimates for internal stigma in our study (Pourmarzi et al., 2017; Zhang et al., 2015). The experience of external stigma was lower among PLHIV in Louisiana, United States, than in our study (Brewer et al., 2020). However, the external stigma scores in PLHIV in Qom, Iran, Chicago, and New Jersey were higher than the estimate in this study (Bagchi et al., 2019; Brewer et al., 2020; Kemp et al., 2019; Pourmarzi et al., 2017). HIV-related stigma and discrimination exist at all levels of society, where people are stigmatized and discriminated against for certain behaviors that may be socially or culturally unacceptable (Moradzadeh & Zamanian, 2021). Our findings indicate that a national response to HIV-related stigma is needed, to improve communication and maintenance, and accelerate further efforts to end the HIV epidemic in the country. To meet UNAIDS 90-90-90 goals, interventions should not be limited to the individual level, but should also target all levels of society, structure, and policy. There is widespread consensus that multidimensional interventions are needed to address the social and structural inequalities that create and reinforce stigma and discrimination of PLHIV (Moussa et al., 2021).

We found a lower QoL in PLHIV who experienced higher external and internal stigma, congregant with studies conducted in Tanzania, South India, Spain, and Iran (Fuster-Ruizdeapodaca et al., 2014; Parcesepe et al., 2020; Rasoolinajad et al., 2018). In Iran, a study by Kalan et al. in 2012 reported a similar result on the association of the QoL and stigma. Although the level of the QoL in the previous study was estimated at a lower score than our study, and this may indicate some improvement in the QoL of PLHIV in Iran, the QoL of PLHIV in Iran remains considerably low (Kalan et al., 2019). External stigma, which includes the actual experience of prejudice, discrimination, and exclusion described by stigmatized people, has a direct negative influence on QoL (Fuster-Ruizdeapodaca et al., 2014). Factors influencing the relationship between external stigma and QoL should also be considered. For example, effective coping strategies or more social support may reduce the impact of external stigma on low QoL. In contrast, maladaptive coping mechanisms, low social support, or social isolation may increase the impact of external stigma on QoL in a synergistic way. Further understanding of the relationship between external stigma and QoL can lead to identifying effective interventions to reduce the impact of external stigma on QoL and improve the QoL of PLHIV (Parcesepe et al., 2020). Internalized stigma is likely to make an individual more sensitive to both actual and anticipated rejection and stigmatization by others, which negatively affects disclosure (Thomas et al., 2005). Given the relationship between QoL and internal stigma, interventions to strengthen social cohesion and increase social support may be a promising strategy to reduce the negative impact of internalized stigma on the QoL (Parcesepe et al., 2020).

Several limitations must be considered when interpreting our findings. First, the information was collected from individuals who presented to two centers in Kerman province; therefore, the results may not be extrapolated to other cities in Iran. Second, associations reported in this study should not be interpreted as causal without careful consideration because our study was a cross-sectional one. Third, all information was self-reported and collected through face-to-face interviews, which may be subject to recall, social desirability, and underreporting biases.

Conclusions

This study demonstrated the low level of QoL among PLHIV in Iran. The association of QoL with external and internal stigma suggests the need for programs to reduce internal and external stigma in both community and medical settings toward this population. Our findings collectively indicate that governmental and nongovernmental organizations should provide a comprehensive intervention to increase the QoL and reduce the stigma toward PLHIV in Iran.

Funding

This work was supported by the Institute for Futures Studies in Health, Kerman University of Medical Sciences (Grant 96001046). The funding body did not play a role in the design of the study, collection, analysis, interpretation of data, or in writing the manuscript.

Author Contributions

All authors of this article meet the four criteria for authorship as identified by the International Committee of Medical Journal Editors (ICMJE); all authors have contributed to the conception and design of the study, drafted or have been involved in revising this manuscript, reviewed the final version of this manuscript before submission, and agree to be accountable for all aspects of the work. Specific roles are listed below: Conceptualization and Methodology: N. Malekmohammadi, M. Khezri, A. Iranpour, and H. Sharifi. Data curation and Formal analysis: N. Malekmohammadi, AA. Rafiee Rad, and H. Sharifi. Project administration: N. Malekmohammadi, N. Ghalekhani, H. Sharifi, and M. Shafiei bafti. Validation: H. Sharifi, M. Khezri, AA. Rafiee Rad, and F. Zolala. Writing— original draft: N. Malekmohammadi and M. Khezri. Writing—review and editing: AA. Rafiee Rad, A. Iranpour, M. Shafiei bafti, N. Ghalekhani, F. Zolala, and H. Sharifi.

Key Considerations

  • Quality of life (QoL) remains considerably low among people living with HIV (PLHIV) in Iran.
  • External and internal stigma were significantly associated with the low level of QoL among PLHIV in Iran.
  • Addressing internal and external stigma and designating a nonjudgmental environment in health settings is warranted to increase the QoL among this population.

Acknowledgments

The authors are grateful to the staff of VCT centers in Kerman and Sirjan, and all individuals who participated in this study.

Reference

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Keywords:

HIV; people living with HIV; quality of life; stigma; Iran

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