Individual and family level factors associated with physical and mental health-related quality of life among people living with HIV in rural China

The availability of antiretroviral therapy (ART) and advancement of primary care system have prolonged the lifespan of people living with HIV (PLH), and HIV has become a chronic illness [1]. However, one of the significant challenges faced by PLH is the compromised quality of life due to the negative impact of HIV on their physical health and mental health [2, 3]. Literature has suggested that suboptimal quality of life may in turn have adverse influences on the patients’ ART retention, medication adherence, and treatment outcomes [4, 5]. Therefore, HIV/AIDS control effort should go beyond objective measures such as CD4 count and viral load, and lay more emphasis on improving the health-related quality of life (HRQoL) of PLH.

Previous studies have identified multilevel factors associated with HRQoL of PLH. Social-demographic characteristics, such as gender, age, and education, were all found to be correlated with HRQoL [6]. Older age was independently associated with lower physical HRQoL for both genders [7]. Disease-related factors associated with HRQoL included stage and time since diagnosis, current CD4 count/viral load, and severity of HIV/AIDS-related symptoms [8, 9], and being on ART was associated with better physical and mental health [10]. Psychological factors, such as depression [11] and social support [6, 9], were also found to be correlated with lower HRQoL of PLH. In addition, family factors play an essential role in the HRQoL of PLH in Asia because of the cultural norms with strong family values [12]. Family income [13] and family support [14] were the associating factors identified in previous studies, as family presents a source of support for the individual with HIV/AIDS, contributing to their physical and mental well-being [5]. Therefore, the study of PLH’s HRQoL should focus more on family-related factors.

In China, there were 501,000 reported cases of PLH by the end of 2014, most of whom lived in rural areas [15]. However, few studies reported the HRQoL of PLH in rural China. Existing studies in China mainly focus on the relationship between HRQoL and the PLH’s individual level factors, such as age [16, 17], employment status [18], income [19], social support [19‐23], CD4 count [16], depression [20] and stigma [23‐25]. Recently, mental HRQoLwas found to be negatively associated with unprotected anal intercourse among Chinese men who have sex with men (MSM) [26]. Studies examining the association between HRQoL and family-related factors were scant in China. A few exceptions included Hidru and colleagues’ (2016) study among MSM with HIV/AIDS, which reported that family income has an influence on PLH’s HRQoL [27]. A study conducted in Nanning, China reported that the lower HRQoL among older Chinese PLH was due to their limited social networks and heavy dependence on family to cope with HIV infection and ageism [28]. Wu and colleagues (2015) studied HIV clinic attendees and reported that family stigma was inversely correlated with most of the HRQoL domains [23]. On the contrary, family support was found to contribute to PLH’s HRQoL [29, 30]. The study aimed to evaluate the physical and mental HRQoL of PLH in rural China, and explore the relationship between HRQoL and individual- and family-level factors. The findings will provide insights to develop strategies to improve the HRQoL for PLH in rural China.

In this study, two sociodemographic factors were found to be associated with HRQoL, including gender and age. Previous research on the relation between gender and HRQoL of PLH had mixed results. Some studies reported that mental HRQoL of male PLH was better than that of female PLH [42], while others generated opposite results [8, 13]. Other research showed no apparent correlation between gender and HRQoL [10]. This study showed that male PLH in rural China had better physical and mental HRQoL than their female counterparts, and it may be due to cultural differences. China has historically been a male-dominated country, and female PLH may bear more burden originated from social position and role orientation [43, 44]. Age is also a major factor that affects PLH’s physiological functioning. Natural aging of body organs can lead to declined body functions. Various HIV/AIDS comorbidities, such as tuberculosis, tumor, hepatitis, and/or opportunistic infections, all severely compromise the HRQoL of PLH [45, 46]. In this study, older age was associated with lower physical HRQoL. This finding is consistent with reports of other studies [13, 42, 47, 48]. However, age is associated with declining physical health, but not necessarily mental health. The association between age and MHS was not statistically significant in regression analysis, which suggests that older PLH may not always have worse mental health compared to younger PLH. Hence, researchers should carefully consider tailored approaches to address the differentiated health needs of specific sub-population (such as female and older PLH) to improve their HRQoL.

China has a distinct family-centered culture and custom, that most PLH receive or require support from their families [49, 50]. In addition, China’s law stipulated that grown-up children are duty-bound to support their parents. It is a common practice for generations of Chinese to live in the same household, especially in rural areas. Therefore, the family forms a crucial safety umbrella for PLH, and family members are the primary caregivers for daily care, treatment, psychosocial and financial support, and childcare [25]. We found that several family characteristics, including family size and family annual income, were associated with PLH’s HRQoL. PLH’s physical health was lower among those who had larger families, which could be explained by two possible reasons: first, the more members in a family, the fewer shares of limited family resources for every member; second, due to urbinazation in the last three decades, a large number of young adults migrate to major cities to seek higher income, leaving behind their young child (ren) to the elder parents. We speculated that the families of PLH in the study mainly consisted of grandchildren of PLH, who could not provide family support and at the same time increase child-care burden of PLH. The finding indicates that more service and care should be provided to PLH with left-behind children in the family. The associations between higher income and better HRQoL was supported by many previous studies, as good family economic condition means better living conditions and better health care for PLH [13, 42, 47, 48]. Thus, one of the important mechanisms to improve HRQoL of PLH in rural areas is to carry out effective strategies for poverty alleviation, which need a collaborative effort of the whole society.

Another family status deserves attention is spousal HIV status, that having an HIV-positive spouse was marginally associated with lower physical and mental HRQoL. In rural China, the spouse is usually the primary source of caring and support for PLH [42, 51]. Spouse’s HIV infection can to a great extent undermine the daily life care, material support, and psychological comfort a family can provide to PLH [52]. In addition, when a family has more than one HIV positive member, the burden of the family will often be more than doubled due to the escalated societal stigma and shame [53, 54]. Hence, HIV seroconcordant couples are in greater need of care and support to cope with aggravating impact of HIV.

Interestingly, current ART use was found to be associated with lower levels of physical and mental health. The finding should be interpreted with caution. At the time of the study, the test-and-treat policy has not been implemented in China, and ART was only provided to PLH with a CD4 lower than 500 (cells/mm3) and/or those with clinical symptoms [35]. The lower level of HRQoL found in PLH who were under ART was due to the advanced disease stages [47, 55, 56].

The study added to the current understanding of levels of HRQoL among PLH and the individual- and family-level factors associated with physical and mental HRQoL. The findings identified the family-related factors had a strong relationship on HRQoL of PLH in rural China. The results may have implications for intervention design and future research. Future intervention should be carefully tailored to the specific needs of sub-populations considering their physical and mental HRQoL conditions. For example, PLH with left-behind children in the family would need greater care and support. More intervention efforts should be paid to HIV seroconcordant couples to help them cope with aggravating impact of HIV.