Quality of life among women living with HIV: the importance violence, social support, and self care behaviors

Quality of life among women living with HIV: the importance violence, social support, and self care behaviors

Social Science and Medicine 52 (2001) 315–322 Quality of life among women living with HIV: the importance violence, social support, and self care beh...

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Social Science and Medicine 52 (2001) 315–322

Quality of life among women living with HIV: the importance violence, social support, and self care behaviors A.C. Gielen*, K.A. McDonnell, A.W. Wu, P. O’Campo, R. Faden Department of Health Policy & Management, School of Hygiene and Public Health, Johns Hopkins University, 624 North Broadway, 5th Floor, Baltimore, MD 21205, USA

Abstract This paper describes the relationship between psychosocial factors and health related quality of life among 287 HIVpositive women using items from the Medical Outcomes Study HIV Health Survey to measure physical functioning, mental health and overall quality of life. Multivariate models tested the relative importance of sociodemographic characteristics, HIV-related factors and psychosocial variables in explaining these quality of life outcomes. A history of child sexual abuse and adult abuse, social support and health promoting self-care behaviors were the psychosocial factors studied. Women in the sample were on average 33 years old and had known they were HIV-positive for 41 months; 39% had been hospitalized at least once due to their HIV; 83% had children; 19% had a main sex partner who was also HIVpositive. More than one-half of the women (55%) had a history of injection drug use and 63% reported having been physically or sexually assaulted at least once as an adult. A history of childhood sexual abuse, reported by 41% of the sample, was significantly related to mental health after controlling for sociodemographic and HIV-related characteristics. Women with larger social support networks reported better mental health and overall quality of life. Women who practiced more self-care behaviors (healthy diet and vitamins, adequate sleep and exercise, and stress management) reported better physical and mental health and overall quality of life. The high prevalence of physical abuse and child sexual abuse reported by this sample underscores the importance of screening for domestic violence when providing services to HIV-positive women. That such potentially modifiable factors as social support and self care behaviors are strongly associated with health-related quality of life suggests a new opportunity to improve the lives of women living with HIV. # 2000 Elsevier Science Ltd. All rights reserved. Keywords: HIV/AIDS; Women; Violence; Quality of life; Self care

Introduction Women represent an increasing proportion of those infected with HIV/AIDS; in the US an estimated 51,953 women are currently living with the disease (Centers for Disease Control, 1998). With improvements in treatment options, quality of life has become a central issue in the medical management of HIV-infected individuals who now can expect to live with their disease for many years. Quality of life encompasses multiple aspects of life satisfaction, such as: role functioning; self esteem; *Corresponding author. Tel: +1-410-955-2397; fax: 1-410614-2797.

spiritual fulfillment; a sense of control over one’s environment; a sense of security in the present and future; a sense of social integration, enjoyment, appreciation and pleasure (Andrews & Withey, 1976). Physical functioning, mental health status and social role functioning are also important dimensions of health-related quality of life (Wu & Rubin, 1992). Studies reported to date have focused on the relationship between HIV treatment or disease indicators, quality of life and sociodemographic characteristics. The number and severity of HIV-related symptoms, infections and HIV/AIDS status are known to be strong predictors of a person’s perceived quality of life (Cleary et al., 1993; Lubeck & Fries, 1992; Tsevat et al., 1996;

0277-9536/00/$ - see front matter # 2000 Elsevier Science Ltd. All rights reserved. PII: S 0 2 7 7 - 9 5 3 6 ( 0 0 ) 0 0 1 3 5 - 0


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Linn, Anema, Hodess, Sharpe & Cain, 1996). Being older, less well educated, and using intravenous drugs have also been associated with poorer quality of life among HIV-positive individuals (Wachtel, Piette, Mor, Stein, Fleishman & Carpenter, 1992). In the few studies that have compared women and men on quality of life indicators, women have generally been found to score lower than men, even after controlling for HIV disease stage (McDonnell, Gielen, Faden, Wu & O’Campo, 1997; Wachtel et al., 1992; Linn et al., 1996). Women with HIV also have been found to be more depressed than men with HIV (Linn, Poku, Cain, Holzapfel & Crawford, 1995). Potentially modifiable risk factors for poor quality of life experienced by HIV-positive women have not been identified. However, certain psychosocial factors known to be of particular concern for HIV-positive women could be expected to have a negative impact on quality of life. For example, HIV-positive women experience high rates of sexual and physical violence (Zierler, Witbeck & Mayer, 1996; Gielen, Fogarty, O’Campo, Anderson, Keller & Faden, 2000; Vlahov et al., 1998); often have inadequate social support (Catalan et al., 1996; Linn et al., 1995); and express concerns about stigma, discrimination and hopelessness (Gielen, O’Campo, Faden & Eke, 1997; Pizzi, 1992; Sowell, Seals, Moneyham, Demi, Cohen & Brake, 1997; Quinn, 1993). A better understanding of the extent to which such factors are associated with quality of life would help to target women in need of additional services. The identification of strategies that women can use to enhance quality of life in the face of a debilitating, stigmatizing disease and difficult life circumstances would enrich efforts to provide supportive interventions to women living with HIV. We had an opportunity to examine some of these issues in a study of HIV-positive women’s reproductive health and HIV/STD sexual risk reduction. In addition to confirming previous findings on the relationship of demographic and HIV-related factors to quality of life, we sought to identify psychosocial correlates that may serve as risk markers or protective factors for quality of life. We hypothesized that quality of life would be negatively associated with a history of abuse and positively associated with having strong social support and self-care behaviors.

transmission to infants (Cabral et al., 1996; Galavotti, Saltzman, Sauter & Sumartojo, 1997). A total of 322 HIV-infected women were enrolled between 7 April, 1993 and 21 June, 1995 from clinic and community sites in Baltimore City. The majority of the subjects were recruited from two hospital based clinical settings: one adult outpatient HIV clinic (n=213, 66%); and one pediatric outpatient clinic serving children of infected women (n=59, 18%). The remaining women were referred from a community based, outpatient HIVtreatment clinic (n=11, 3%) or were referred informally by other project participants and by outreach workers employed by the project (n=39, 12%). The HIV status of all participants was confirmed either from medical records or by testing. Quality of life measures were added to the interview after subject recruitment began; therefore, complete data were available for 287 (89%) of the study participants. No statistically significant differences with respect to sociodemographic variables (i.e. age, ethnicity, education) were found between the full sample and the 287 women used in this analysis. Because the study concerned reproductive health services and HIV/STD sexual risk reduction among adult women, enrollment criteria included being of reproductive age (18–44 years) and not currently pregnant. Women were also excluded if their care provider thought they were physically or mentally unable to participate. An interviewer explained the study and obtained written consent in accordance with the protocol approved by the Johns Hopkins Committee on Clinical Investigation. To protect patients’ confidentiality, names of women who declined to participate or were ineligible were not retained in study records, which meant that women could be approached by the interviewer more than once over the course of the two year recruitment period; thus, it was not possible to calculate a true enrollment rate. We did, however, examine the extent to which our enrolled sample was similar to all women receiving care at the adult HIV clinic during our recruitment period. The distributions of age, ethnicity and time infected with HIV were the same for our enrolled women and the clinic population. Participants were interviewed at the time of enrollment in a private office near the hospital. The interview lasted from 40 to 90 min and women were paid $20. Child care was available for those who needed it. Measures

Methods Subjects and procedures Study participants were enrolled in a multi-site study funded by the Centers for Disease Control and Prevention to develop and evaluate interventions to prevent HIV infection in women and to prevent HIV

Health-related quality of life Health status and quality of life were measured with a modified version of the Medical Outcomes Study HIV Health Survey (MOS-HIV), a brief health status measure with demonstrated reliability and validity for measuring health-related quality of life among HIVpositive individuals (Revicki, Wu & Brown, 1995; Wu

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et al., 1991; Wu, Revicki & Malitz, 1997; Smith, Feldman, Kelly, DeHovitz, Chirgwin & Minkoff, 1996; McDonnell et al., 1997). The MOS-HIV includes scales and items to assess ten dimensions of functioning and well-being, including: general health perceptions; physical, social, role and cognitive functioning; pain; energy; mental health; health distress; overall quality of life. Because of time constraints, we included fewer items for some of these scales. Three domains of health-related quality of life are included in this analysis: physical functioning, mental health and overall quality of life. These three were selected because the scales included most or all of the original MOS-HIV items and had adequate internal consistency, and together represent a reasonable cross-section of the domains of interest in assessing quality of life. Questions ask respondents to rate their health during the past four weeks. The PF scale included all six of the original MOS-HIV items and asked respondents if their health limited them a lot, a little or not at all in: (1) vigorous activities; (2) moderate activities; (3) climbing stairs; (4) bending; (5) walking one block; (6) bathing, dressing, using the toilet. The Cronbach’s alpha was 0.89 for the physical functioning scale and 0.64 for the mental health scale. The mental health scale included four of the five original items and asked how much time the respondent felt: (1) downhearted and blue; (2) so down in the dumps nothing could cheer you up; (3) calm; (4) happy. Response options were on a five-point scale from none of the time to all of the time. Overall quality of life is a single item variable taken from the original MOS-HIV that asks respondents to rate their quality of life on a five point scale from ‘‘very bad, could hardly be worse’’ to ‘‘very well, could hardly be better’’. Item scores were reversed where necessary so that higher scores reflect better health. For each scale, standard scoring procedures were used in which item responses are summed and scores converted to a 0–100 scale with higher scores indicating better functioning. Sociodemographic characteristics Variables measured included age, education, marital status and ethnicity. HIV-related characteristics Six variables were included to describe HIV-related social and medical factors hypothesized to influence women’s quality of life. These included: (1) time since learning of HIV infection (in months); (2) ever having been hospitalized for an HIV-related illness or complication (yes/no); (3) having an HIV-infected child (no children, all children negative, any HIV-infected child); (4) having an HIV-positive main sex partner (no main partner, HIV-positive main partner, negative or unknown status main partner); (5) ever having used


intravenous drugs (yes/no); (6) ever having exchanged sex for drugs, money or a place to stay (yes/no). Psychosocial characteristics Social support Consistent with traditionally used measures of social support and our own prior work (Gielen, O’Campo, Faden, Kass & Xue, 1994), we asked women about three dimensions of support: (1) having a confidant (yes/no); (2) network size (number of close relatives and friends); (3) instrumental support, measured by asking women if they had someone to lend or give them money and someone to count on to take them in if they needed a place to stay. Responses to the two dichotomized questions were summed to create an instrumental support index ranging from 0, indicating no instrumental support, to 2, having both types of instrumental support available. Health promoting behaviors Our measure of health promoting behaviors was based on formative research conducted at the outset of the study, including discussions with HIV clinicians and interviews with HIV-positive women about what health care providers had told them about how to take care of themselves. We asked women whether they practiced five health promoting behaviors, including: (1) eating a healthy diet; (2) getting an adequate amount of sleep; (3) engaging in regular exercise; (4) keeping stress levels down; (5) taking vitamins. Response choices were always, most of the time, sometimes, or never. A composite score was constructed by dichotomizing the responses (1=all/most of the time and 0=some/never of the time) and tallying the number of affirmative responses. Adult violence history A series of four dichotomously scored items (yes/no) asked women whether, as an adult, they had ever been: (1) beaten up; (2) threatened with a knife or gun or had a knife or gun used against then; (3) kicked, bitten or hit by someone; (4) raped or otherwise sexually abused. The number of affirmative responses was tallied to create a composite score ranging from 0 to 4. Child sexual abuse Women were asked in a single item whether they had ever been sexually abused or raped as a child and a dichotomous response variable (yes/no) was used in the analysis. Analysis Analysis of variance was used to compare mean scores on each of the health-related quality of life dependent


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variables (physical functioning, mental health, quality of life) for each of the psychosocial characteristics. Multiple linear regression was used to describe the association between health-related quality of life dependent variables and demographic, HIV-related and psychosocial variables. Each of three models (physical functioning, mental health, quality of life) contained six HIV-related variables (having an HIV+ child, having an HIV+ partner, time known HIV+, ever injected drugs and ever exchanged sex for money, drugs or money), and six psychosocial variables (instrumental support, social network, confidant, sexual abuse as a child, abuse as an adult and the number of health promoting behaviors). Two of the four demographic variables (age and education) were included; ethnicity was omitted because of insufficient variation and current partner status was used in lieu of marital status. A step wise hierarchical regression equation was built for each of the three models; demographic variables were entered first, HIVrelated variables second and psychosocial variables third. Interactions between the psychosocial characteristics were explored, but are not shown as none were statistically significant.

confide in. Forty-one percent of the sample reported having been sexually abused as a child; 63% had been physically or sexually assaulted at least once as an adult; 5% had experienced all four violent events at least once. Women reported currently practicing a mean of 2.4 (S.D.=1.5) of the five recommended health promoting behaviors. The most commonly reported health behaviors were getting adequate sleep and exercising regularly (52.6%) and the least commonly practiced was managing stress (35.5%; Table 2). Correlates of health-related quality of life Mean scores on the health-related quality of life measures were 56.2 (S.D.=22.0) for mental health, 63.8 (S.D.=37.7) for physical functioning, and 60.4 (S.D.=25.4) for overall quality of life. Table 3 presents the bivariate comparisons between each of the independent variables and these three measures. Women with a history of child sexual abuse reported significantly lower scores on all three measures (mental health, F=15.87, p50.001; physical functioning, F=4.18, p50.05; quality of life, F=8.95, p50.01). A history of physical abuse

Results Sociodemographic characteristics Almost all of the women were African–American (94%) with a mean age of 33.1 years (Table 1). A slight majority of the women (54.5%) did not have a high school or GED diploma. A majority of the women (62%) had never been married and 7.7% were currently married. HIV-related characteristics Women had known about their HIV status an average of 41 months (Table 1). More than half (55%) of the women had a history of intravenous drug use and 32% reported that they had at one time exchanged sex for money, food, drugs or a place to stay. Approximately 39% of the women had been hospitalized for a condition or complication associated with their HIV status. Almost one quarter (24%) of the women had a child who was HIV-positive and 19% had a main partner who was also HIV-positive, although 11% did not know their partner’s status. Psychosocial characteristics Social support measures in this sample indicated that 60% reported fewer than six people who were close to them, 15% had no one they could count on for money or a place to stay and 12% had no one they could

Table 1 Sample characteristics of 287 HIV-positive women Mean (S.D.) or percentage Sociodemographic characteristics Age Education level Less than high school High school or greater Race/ethnicity African–American Caucasian Other Current marital status Married Never married Other (divorced/separated/widowed) HIV-related characteristics Time known HIV-positive HIV hospitalization Ever intravenous drug use Ever exchange sex Children No Children All HIVÿ At least one HIV+ Partner No partner HIVÿ/unknown partner HIV+ partner

33.1 years (6.3) 54.5 45.5 93.7 4.9 1.4 7.7 62.2 30.1 41.3 months (29.9) 39 55 32 17 59 24 44 38 19


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or rape as an adult was not significantly related to the health-related quality of life scores, although there was a trend in the hypothesized direction. Two of the social support variables were related to health-related quality of life measures. Having less instrumental social support was significantly related to lower mental health scores (F=8.97, p50.01) aswell as lower overall quality of life (F=8.76, p50.001). Women with fewer than six people in their network reported significantly lower scores for physical functioning (F=14.61, p50.001) and for over-

Table 2 Reported health promoting behaviors of 287 HIV-positive women Health promoting behavior % of women practicing behavior all or most of the time Keep stress levels down Take vitamins Eat a healthy diet Get enough exercise Get enough sleep

35.3 43.6 51.9 52.6 52.6

all quality of life (F=20.05, p50.001) than women reporting larger networks. Practicing more health promoting behaviors was significantly associated with higher scores on all three measures (mental health, F=12.85, p50.001; physical functioning, F=2.84, p50.05; quality of life, F=9.19, p50.001). Multivariate analysis Table 4 presents the results of the regression analysis for each of the three health-related quality of life measures. Standardized beta coefficients are provided to allow comparison of the relative importance of the independent variables. For mental health, only psychosocial characteristics were significantly related. Women who had larger social networks and practiced more health promoting behaviors reported higher levels of mental health, while those who had been sexually abused as children reported significantly worse mental health. This model explained 23% of the variance in mental health scale scores. For physical functioning, younger women, those who had fewer HIV-related hospitalizations, and those who practiced more health promoting behaviors reported significantly better physical functioning. This model explained 15% of the

Table 3 Relationship between health-related quality of life mean scale scores and psychosocial variables of 287 HIV-positive women Psychosocial variables



Mental health

Physical function

Quality of life

Child sexual abuse


41.2 58.8

50.17a 60.36

58.26c 67.96

55.13b 64.07

Adult abuse, number of types experienced

0 1 2 3 4

37.3 26.8 15.3 15.3 5.2

57.17 58.29 55.70 55.57 42.67

71.03 60.82 59.47 59.75 51.19

62.50 61.69 55.11 59.88 56.67

Confidant for social support


88.5 11.5

56.45 56.25

63.44 65.53

60.96 58.33

Instrumental social support Lend money Place to stay

None Either Both

14.7 18.9 66.3

45.85a 51.63 59.79

58.54 62.04 65.61

47.02a 58.49 64.10

Size of social support network

56 people 6 people

60.4 39.6

63.37 64.90

52.50a 62.30

55.37a 68.58

Health promoting behaviors, number practiced

0 1 2 3 4 5

11.5 20.3 23.3 17.8 18.5 8.1

54.2a 58.0 61.0 62.4 71.7 83.3

43.3c 47.2 52.5 59.7 67.9 73.6

49.2a 53.1 54.0 63.7 73.1 78.3


p50.001. p50.01. c p50.05 by ANOVA. b


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Table 4 Health related quality of life scores as a function of demographic, HIV-related, and psychosocial characteristics among 287 HIVpositive women: standardized beta coefficients from stepwise linear regression models Mental health Variables entered Demographic Age Education HIV-related Time HIV+ +Child +Partner Hospitalization Intravenous drug use Exchange sex Psychosocial characteristics SS:network SS:confidant SS:instrumental Health promoting behaviour Adult abuse Child sexual abuse R2 F a

Step 1 0.06 0.10

0.02 2.13

Physical functioning

Quality of life

Step 2

Step 3

Step 1

Step 2

Step 3

Step 1

0.05 0.10

0.05 0.04

ÿ0.18a 0.07

ÿ0.14a 0.06

ÿ0.16a 0.04

0.03 0.20a

0.03 ÿ0.06 ÿ0.03 ÿ0.05 ÿ0.04 ÿ0.07

0.00 ÿ0.07 ÿ0.00 0.00 ÿ0.04 ÿ0.05

0.08 0.10 ÿ0.04 ÿ0.23a ÿ0.02 ÿ0.05

0.08 0.10 ÿ0.04 ÿ0.22a ÿ0.01 ÿ0.02

0.10 3.86a

0.01 0.01 ÿ0.00 0.18a ÿ0.06 ÿ0.05 0.15 3.32a

0.03 0.95

0.15a 0.02 0.10 0.35a 0.03 ÿ0.13a 0.23 5.63a

0.03 4.83a

Step 2

Step 3

0.02 0.20a

0.01 0.15a

0.05 0.00 ÿ0.11 ÿ0.08 0.01 ÿ0.01

0.04 5.83a

0.06 2.19a

0.04 0.00 ÿ0.08 ÿ0.04 0.00 0.00 0.20a ÿ0.00 0.13a 0.27a 0.01 ÿ0.06 0.22 5.35a


variance in physical functioning scale scores. For overall quality of life, women with more education, larger social networks, more instrumental support and those who practiced more health promoting behaviors reported significantly better overall quality of life. This model explained 22% of the variance in quality of life scores. Across all three dependent variables, the proportion of variance explained increased substantially with the addition of the psychosocial variables, when compared to models containing only demographic and/or HIVrelated variables. The number of health promoting behaviors was the only variable significantly associated with all three measures of health-related quality of life. The standardized beta coefficients were larger for health promoting behaviors than for any of the other psychosocial variables.

Discussion Results of this study indicate that consideration of psychosocial factors, in addition to previously studied demographic and HIV-related factors, can enhance our understanding of quality of life among HIV-positive women. As others have found (Wachtel et al., 1992), in this sample of economically disadvantaged women with HIV, younger age and more education were related to

better quality of life. Prior hospitalization due to HIV was also negatively related to quality of life, which is consistent with other studies that have demonstrated significant relationships between the presence of symptoms and poorer quality of life (Wachtel et al., 1992; Cleary et al., 1993; Lubeck & Fries, 1992; Tsevat et al., 1996; Linn et al., 1996). Unique to our study was the finding that after adjusting for these factors, violence, social support and practicing health promoting behaviors were significantly related to dimensions of quality of life. A history of child sexual abuse was associated with significantly lower scores on the mental health scale in the multivariate analysis. There was also a slight trend toward lower quality of life scores among women experiencing all four types of physical violence (beaten up; knife or gun used; kicked, bitten or hit; raped or sexually abused), although there were no statistically significant differences. The high rates of both child sexual abuse (41%) and adult physical abuse (63%) reported in this study are consistent with those reported by Zierler et al. (1996) and Vlahov et al. (1998) in their studies of HIV-positive women and provide additional evidence of the need to address the problem of violence among these women. Having a larger social network was associated with better mental health and overall quality of life. Having

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more instrumental social support was also associated with higher overall quality of life. These results are consistent with the large literature on the importance of social support for health in general (Cohen & Syme, 1985) and for HIV-infected individuals in particular (Catalan et al., 1996; Linn et al., 1995; Gielen et al., 2000; Friedland, Renwick & McColl, 1996). Social support is also considered important as a means of buffering oneself in the presence of stress and facilitating adaptive coping (Lazarus & Folkman, 1984). Perhaps our most interesting finding was the relatively robust association between practicing more health promoting behaviors and better mental health, physical functioning and overall quality of life. This finding suggests that even in the complicated context of HIV disease, poverty, and oppression, relatively straightforward changes in lifestyle such as taking vitamins, eating well, exercising, getting adequate sleep and managing stress may make a difference. It should be emphasized however that our cross sectional design makes causal inference impossible; it may be that those who feel better are able to practice more health promoting behaviors. Future research on this issue would be strengthened by using a longitudinal design and incorporating additional measures of health such as days of disability or symptom severity. Nevertheless, we found that even after adjusting for two surrogates for health status } how long women had been seropositive and whether they had a prior HIV-related hospitalization } practicing health promoting behaviors was significantly associated with all three quality of life measures. The association of potentially modifiable factors such as self care behaviors suggests a possible new opportunity to improve the quality of life of women living with HIV. However, modifying lifestyle behaviors is not a simple matter, even in the best of circumstances and it may be particularly difficult in the context of living with HIV. Requirements of complex medical regimens and frequent medical visits, the need to modify sexual practices and for some, drug use issues and childrearing concerns add to the burdens of everyday life. Coping with a chronic and life threatening illness may make stress management particularly challenging. In fact, in this sample, managing stress was least often reported, with barely a third (35%) of the sample saying that they were managing stress well. Recommendations to adopt health promoting behaviors should be tempered by an appreciation of the difficulty of making such changes and the need to replicate the findings reported here. The results of this study have utility for planning interventions to enhance well-being among women living with HIV. First, older women, those with less education, and those who have been hospitalized for HIV-related conditions may require additional support services. Second, the high rates of both child and adult abuse reported in this sample underscore the pressing


need for clinical screening and treatment for these experiences. The relationship between a history of child sexual abuse and subsequent poor mental health provides additional evidence for having adequate mental health services available for HIV-positive women. Interventions to enhance women’s social networks and encourage the adoption of health promoting behaviors, especially in the area of stress management, should be developed and carefully evaluated. Planning such interventions will require further elucidation of the barriers and facilitators women experience in carrying out these health promoting behaviors. In the meantime, however, women living with HIV can take heart from our findings that relatively straightforward self-care behaviors are associated with better functioning and well-being.

Acknowledgements Portions of this paper were presented at the National Conference on Women and HIV, Los Angeles, May 1997. This work was supported by Cooperative Agreement No. U65/CCU306934 from the Center for Disease Control and Prevention. The authors gratefully acknowledge the assistance of the women, health care providers and project staff who participated in this study.

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