The aim of this study was to assess prevalence and levels of hopelessness and its underlying structure in a sample of women and men living with HIV in Sweden. We found feelings of moderate to severe hopelessness in about half of both women and men, which is much higher than in studies involving general populations [10, 31]. This suggests feelings of hopeless are relatively common in people living with HIV, and may indicate, as some have suggested, an elevated risk of suicidal ideation [2, 32, 33]. As at least one other study, we found no differences in prevalence or level of hopelessness between women and men [2].
Nevertheless, we found different underlying structures of hopelessness in women and men, although the path models for each did share common factors contributing directly to hopelessness, that is dissatisfaction with one’s physical health, dissatisfaction with one’s finances, and low HIV-related emotional support.
Being dissatisfied with one’s physical health was a strong predictor of hopelessness. This suggests predictors of feelings of hopelessness are related to the effect HIV is having on the body and demonstrates a strong connection between the physical and psychological [16]. Such a relationship is also found in the area of other chronic conditions such as cardiovascular diseases, cancer, and diabetes [34].
Dissatisfaction with one’s physical health was the strongest predictor of hopelessness in women, but not men, suggesting women may feel negative health outcomes somewhat more strongly.
Dissatisfaction with finances suggests financial hardship is strongly associated with feelings of hopelessness. Whether this is related to feelings of lower socio-economic status or difficulties to independently provide for one’s self is unclear [14, 35]. For men, dissatisfaction with finances presented the strongest pathway and, as suggested by the model, is strongly related to unemployment.
Low HIV-related emotional support was almost an equally strong predictor of hopelessness for both men and women. It may be a consequence of concealing one’s HIV status out of fear of stigmatization and rejection or the experience of other’s withdrawal upon HIV disclosure. This finding strongly indicates having an emotional social support system is important for maintaining psychological wellbeing in people living with HIV [8, 11, 15]. The significance of emotional social support is a well-known fact also in other chronic [36] and acute [37] health condition as well as in the general population [38].
Being single and increasing age predicted hopelessness in men, but not women. The paths from these two predictors to hopelessness were not strong, especially the path from age. The association between being single and feelings of hopeless in men has been observed by at least one other study [14]. We do not know whether being single was HIV-related or of a circumstantial or intentional character. There may be a longing for an intimate relationship, but HIV puts up barriers to fulfill this wish [17]. As intimate relationship functions as a protective shield in stressful times, being single may trigger feelings of loneliness. Research acknowledges loneliness as a central aspect of life among people living with HIV [39], but also for people with cardiovascular, cerebrovascular, and other chronic diseases [40]. The association between loneliness and depression is well documented [39,40,41].
Increasing age has a number of possible explanations. Adverse psychological effects of HIV as well as potential chronic health problems may be common among older people with HIV [42]. Increasing age may also be indicative of increased feelings of vulnerability to social isolation, existential issues such as meaning of life [43], existential isolation [44], and feelings associated with dying and death.
Women presented a comparatively simpler underlying structure of hopelessness than men, in that fewer paths were found to significantly influence feelings of hopeless through direct factors. Men had a more complex structure, but this was due largely to employment status. For both women and men, the strongest indirect path was from unemployment to dissatisfaction with finances, strongly suggesting unemployment indirectly has a significant impact on psychological wellbeing [35, 45,46,47]. Whether unemployment is to lack of a job, long-term sick leave, disability pension, or pension is unclear from the data. Even so, unemployment is likely indicative of economic strain, discontent with circumstances, and possibly feeling decreased social status associated with not being a “working person” [48]. It is also possible unemployment may associate with physical limitations due to HIV [47].
While HIV stigmatization was indirectly associated with hopelessness for both women and men, type of stigmatization and its indirect paths differed by gender. Among women, anticipated stigmatization, which may be perceived as a stressor, had an indirect effect on hopelessness through dissatisfaction with physical health. Our data supports other studies that anticipated stigmatization undermines the physical and mental well-being [49, 50]. For men, internalized HIV stigmatization indirectly affected hopelessness, similar to another study [12]. Characteristics of internalized HIV stigmatization are among others self-loathing and feelings of being inferior to others. These may be strong barriers to HIV disclosure reflected in low HIV-related emotional support, leading to social isolation and loneliness. Other than having unemployment and HIV stigmatization in common, the factors indirectly associated with hopelessness were different in men and women.
For women, there were three indirect paths to hopelessness: being single, lower education, and physical side effects from ART. The strongest indirect path was from being single to low HIV-related emotional support, which is somewhat difficult to understand, as there may be several possible explanations. But, irrespective of its underlying cause, low emotional support may lead to feelings of being excluded and increased vulnerability to social isolation, loneliness and increased psychological distress. Lower level of education had a strong indirect path to physical health dissatisfaction, suggesting lower education indirectly has a significant negative impact on psychological wellbeing [51]. There was also an indirect path from lower level of education to financial dissatisfaction. Less education may be a surrogate measure for lower socio-economic status [35, 51]. Self-reported physical side effects from ART had through low HIV-related emotional support an indirect, but weak effect on hopelessness. Other studies have observed direct association between physical side effects and hopelessness [13, 16].
For men, three factors were indirectly associated with feelings of hopeless: born outside Sweden, time since HIV diagnosis, and dissatisfaction with one’s openness about HIV. There were two indirect paths from born outside Sweden to hopelessness. The strongest was to age, suggesting foreign born men may have been younger than Swedish born men living with HIV. This is supported by the Swedish HIV statistics [52]. The other indirect path from born outside Sweden was to dissatisfaction with finances. Migrants in Sweden are often economically more vulnerable than Swedish-born citizens [53]. Their financial hardship may be indicative of the combination of migration and HIV status, suggesting being a migrant indirectly increases psychological distress [49, 53, 54]. In contrast to Stanley et al.’s study [14], time with diagnosed HIV infection had a strong indirect effect on hopelessness through age. Older men were likely to have been diagnosed with HIV infection for more than 10 years, signifying they may have ongoing health problems or disability related to HIV infection [55]. The indirect path from time since HIV diagnosis to financial dissatisfaction was weak, but may reflect increased time living with HIV has had its toll on the financial situation. Dissatisfaction with one’s openness about HIV had a weak association through low HIV-related emotional support to feelings of hopelessness.
Strengths and limitations
The strength of this study is its nationwide, multicultural sample, including almost a quarter of these who could have attended the 17 HIV units in Sweden at the time of data collection. Nevertheless, given the cross-sectional design, cause and effect relationships are not possible. Furthermore, underlying structures of hopelessness may change over time given that feelings of hopelessness are dynamic. Another limitation is response bias. We don’t know about the people who didn’t enroll, and why not. Or what proportion didn’t visit a clinic in that time frame. This study also contained a smaller proportion of women (28% vs. 38% overall) and a higher proportion of Swedish born participants (59% vs. 36% overall) than the national demographic of people living with HIV. These differences may decrease the generalizability of the findings to the HIV population in Sweden. Considering the average age of the participants were higher in men (43 for women and approximately 50 for men) the question remains if a younger study population would have yielded different results. Nevertheless, the average age of women and men in our sample corresponds with the age distribution of the larger population of people living with HIV in Sweden at the time of data collection. Because the sample was drawn only from persons living with HIV in Sweden, results are not generalizable to populations living elsewhere. As the data were self-reported, they may include the social desirability bias, which may have decreased given the anonymous questionnaire. We did not measure depression and it is possible that it would co-vary with feelings of hopelessness. Further studies are needed to assess their associations and underlying structures.