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The correlation between perceived social support and illness uncertainty in people with human immunodeficiency virus/acquired immune deficiency syndrome in Iran
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.156508
Background: Illness uncertainty is a source of a chronic and pervasive psychological stress for people living with human immunodeficiency virus (HIV)/acquired immune deficiency syndrome (AIDS) (PLWH), and largely affects their quality of life and the ability to cope with the disease. Based on the uncertainty in illness theory, the social support is one of the illness uncertainty antecedents, and influences the level of uncertainty perceived by patients. Keywords: Acquired Immune Deficiency Syndrome, Human Immunodeficiency Virus, Iran, Social support, Uncertainty in illness
During past decades, human immunodeficiency virus (HIV)/acquired immune deficiency syndrome (AIDS) that naturally accompanied death changed into a chronic disease with coping challenges, such as chronic fatigue, complex treatments, and social stigma. Although some patients may be able to cope with mental stresses of the disease, a lot of them have difficulty coping with the disease due to depression, uncertainty, etc. [1] Uncertainty is a chronic and pervasive source of psychological stress for people living with HIV/AIDS (PLWH). Illness uncertainty appears when patients cannot determine the meaning of illness-related events, and thus, it is considered a major psychological stressor for patients with life-threatening diseases. [2],[3] Various factors, such as complex and changing treatments, ambiguous pattern of symptoms, and fear of being ostracized from the community highlight illness uncertainty. [4] Although the rate of HIV infection is very low in Iran (about 0.2%), it has an upward trend. [5] Based on recent statistics, 23,902 PLWH were identified in Iran, but the real rate is estimated to be more than 100,000 people. Men and women with HIV/AIDS comprise 91% and 9%, respectively, and needle sharing among drug users has been reported as the most frequent cause of AIDS in Iran. [6] Patients with chronic diseases, like HIV, continuously and persistently live with uncertainty, which can damage their physical, social, spiritual, mental, and economic dimensions of life and daily activities. [7],[8] Previous studies showed that increased uncertainty correlated with increased stress, [9] increased mood disorders, [10] and reduced quality of life and effectiveness of patients' coping. [11],[12] This study used theory of uncertainty in illness, according to which structure providers like education, healthcare providers, and social support influence uncertainty directly or indirectly. [7] Some studies showed that patients with higher levels of education experienced less uncertainty. [11],[13] Shannon and Lee (2008) reported a strong inverse correlation between social support and uncertainty in patients with AIDS. [14] Other studies also revealed a significant correlation between social support and uncertainty, [15],[16] but some other studies did not show such a significant correlation. [17] It seems that social support can create certainty in patients as informing them can reduce uncertainty. [18] Numerous studies have been done on illness uncertainty mainly in western countries that culturally differ from Iran. Despite the importance of uncertainty in PLWH, no such published study was found in Iran. In this respect, this study was conducted to determine uncertainty in Iranian PLWH and its correlation with social support. This study also examined the correlation between uncertainty and some selected demographic variables (such as age, education, etc.).
This cross-sectional correlational study was conductedwith 80 PLWH going to the AIDS Research Center in Imam Khomeini Hospital, Tehran, Iran. Research board of the center approved this study. Samples were selected using convenience sampling method. Sample size was determined with reference to similar previous studies as 50 people, but we set the sample size as 80. The inclusion criteria were as follows: Age over 18 years, consent to participate, diagnosed HIV/AIDS, ability to read and write in Persian, lack of significant psychiatric disorders, and lack of other important comorbidities. Participants were briefed and enrolled in the study after signing informed consent form. Instruments The data were collected using inventories including a demographics form, Mishel's uncertainty in illness scale-adult form (MUIS-A), and the multidimensional scale of perceived social support (MSPSS). MUIS-A is a valid and reliable instrument used in different studies and languages for numerous diseases. [19],[20] This instrument has 32 items with 5-point Likert scale from strongly disagree to strongly agree. Its total score ranges from 32 to 160, and higher score means higher uncertainty. MUIS-A has four subscales. Cronbach's alpha reliability coefficient for the entire instrument, ambiguity subscale (13 items), complexity (7 items), inconsistency (7 items), and unpredictability (5 items) is 0.87, 0.86, 0.81, 0.7, 0.65, respectively. [19] In this study, the Persian version of MUIS-A whose psychometrics was examined on Iranians and had a suitable reliability and validity [21] was used. Social support was measured using MSPSS form. This instrument consists of 12 items with 7-point Likert scale from very strongly disagree to very strongly agree. Its total score ranges from 12 to 84, and higher score means higher perceived social support. The Persian version of the instrument was used in different studies in Iran and has a suitable reliability and validity. [22],[23] Data analysis The data were analyzed in Statistical Package for the Social Sciences (SPSS) 16 software, using Pearson's and Spearman's correlation coefficients. Regression analysis was performed to determine the relative significance of variables in expression of uncertainty variance. Those variables that had a significant correlation with uncertainty were entered into the model.
[Table 1] shows participants' demographics and clinical specifications [Table 1]. The results showed participants' mean total score of uncertainty was 94.7 ± 14.2 (range: 51-129) that indicated a high level of uncertainty in patients. Mean score of the perceived social support was 58.8 ± 15.1 (range: 24-84) [Table 2].
Pearson's correlation test revealed a significant inverse correlation between social support and uncertainty (P = 0.01, r = −0.29). Analysis of data showed a significant inverse correlation between time since diagnosis and uncertainty (P = 0.015, r = −0.27) [Table 3]. Spearman's correlation showed an inverse, though not significant, correlation between education and uncertainty. There was also no significant correlation between other demographic specifications (age, occupation, etc.) and uncertainty.
Regression analysis was used to determine the correlation and predicting value of uncertainty with those of the independent variables. Regression analysis revealed that social support and time since diagnosis expressed 12.3% of the uncertainty variance in patients (P = 0.002, Adj R 2 = 0.123). Social support (β = -0.27) and time since diagnosis (β = -0.25) significantly predicted uncertainty.
The results showed that PLWH in this study experienced high levels of uncertainty. The results agreed with the level of uncertainty reported in other studies on chronic diseases. [17],[24] However, mean uncertainty in the present study was somehow higher than that reported in Mishel's combined data for chronic diseases. [19] It can be due to our participants' lower knowledge than that in western communities. The results revealed that patients with HIV experienced a medium level of social support. This result agreed with that of a study performed on PLWH in Thailand. [25] Like in other eastern countries, in Iran, family members have a strong and close relationship with one another. The present study showed a significant inverse correlation between social support and uncertainty (P = 0.01), as patients with higher perceived social support suffered less uncertainty. This result conformed to that of the previous studies on the correlation between uncertainty and social support. [14],[16],[18] Social support received through public networks, friends, or others makes patients better understand the meaning of events and may increase their ability to clarify uncertain events. [24] This result agreed with that of other studies and the theory of uncertainty in illness. Similar to the studies conducted by Lasker et al., (2010) and Kang (2011), this study showed no significant correlation between education and uncertainty. [16],[17] However, some other studies showed a significant correlation between education and uncertainty. [26],[27] In such studies, education did not have a fixed pattern in correlation with uncertainty; sometimes, the correlation was significant and sometimes not. A possible reason for this finding might be the small sample size because uncertainty score in a small sample shows less difference for the different educational levels and cannot be determined appropriately. Unlike previous studies, this study did not find a significant correlation between age and uncertainty. Previous studies showed a significant inverse correlation between age and uncertainty, as uncertainty decreased with age. [28],[29] The lack of significant correlation between these two variables in this study might be due to its rather small sample size and the point that participants' age was close to one another, which could hide the correlation between age and uncertainty. The results showed a significant correlation between time since diagnosis and uncertainty, as the patients whose disease was diagnosed before others had less uncertainty. This result also conformed to the theory of uncertainty in illness and was rational because it is clear that patients will be familiar with the disease and its events, and their uncertainty will decrease with the passage of time since diagnosis. Limitations The first limitation of this study was its rather small sample size, and the second limitation was related to the convenience sampling method that might have caused sampling bias. Moreover, samples were selected only from the AIDS Research Center in Tehran, and consequently, the results could not be generalized to PLWH in other parts of Iran.
In conclusion, the findings of this study showed that uncertainty is a serious aspect of illness experience in PLWH. Furthermore, the results provided more support in relation to the social support and uncertainty in PLWH. The inverse relationship of social support with uncertainty suggests that providing adequate, structured information to patients, as well as opportunities to discuss their concerns with other PLWH and receive emotional support from their healthcare providers may be worthwhile. The specific nursing strategies for PLWH may include: (a) HIV/AIDS information sheets or pamphlets that explain about the illness (diagnosis procedures, options for treatments, prognosis, etc.), (b) education sessions for newly diagnosed patients and their family members, and (c) support group meetings where newly diagnosed patients can meet other PLWH, share their concerns and form an information network among them.
Hereby, we appreciate all patients who intended to participate in our study. The authors express their thanks to the personnel of AIDS Research Center in Tehran and Yarane-Mosbat Club due to their kind cooperation.
[Table 1], [Table 2], [Table 3]
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