This paper describes the AACTG Adherence Instruments, which are comprised of two self-report questionnaires for use in clinical trials conducted by the Adult AIDS Clinical Trials Group (AACTG). The questionnaires were administered to 75 patients at ten AACTG sites in the USA. All patients were taking combination antiretroviral therapy (ART), including at least one protease inhibitor. Eleven per cent of patients reported missing at least one dose the day before the interview, and 17% reported missing at least one dose during the two days prior. The most common reasons for missing medications included 'simply forgot' (66%) and a number of factors often associated with improved health, including being busy (53%), away from home (57%) and changes in routine (51%). Less adherent patients reported lower adherence self-efficacy (p = 0.006) and were less sure of the link between non-adherence and the development of drug resistance (p = 0.009). They were also more likely to consume alcohol, to be employed outside the home for pay and to have enrolled in clinical trials to gain access to drugs (all p < 0.05). Twenty-two per cent of patients taking drugs requiring special instructions were unaware of these instructions. Each questionnaire took approximately ten minutes to complete. Responses to the questionnaires were favourable. These questionnaires have been included in six AACTG clinical trials to date and have been widely disseminated to investigators both in the USA and abroad.
There is growing evidence that well designed, targeted, theory-based behaviour change interventions can be effective in reducing the spread of HIV. Although each behaviour is unique, there are only a limited number of theoretical variables that serve as the determinants of any given behaviour. Understanding these variables and their role in behavioural prediction can guide the development of effective behaviour change interventions. This paper will describe and define these variables and show how they can be used in the development of behavioural interventions.
The objective was to investigate the relationship of disease severity, health beliefs and medication adherence among HIV/AIDS patients. A survey was administered to 72 patients in three different stages of HIV/AIDS (CDC clinical categories A, B, C). Multivariate analyses revealed that there were no significant differences in patients' perceptions of the severity of HIV/AIDS or perceptions of the benefits and barriers for the treatment across three disease stages. However, the most severely ill patients (in stage C) perceived a higher risk of complications if they did not take their medicine as prescribed compared to asymptomatic patients (stage A) (p = 0.01). Also, patients in stages B and C were more adherent to their medications compared to patients in stage A (p = 0.007). Finally, perceived susceptibility-inaction was positively related to medication adherence (p = 0.005) and difficulty in following doctors' instructions was negatively related to patients' medication adherence (p = 0.009). In conclusion, patients' illness experiences are associated with their beliefs about the chances of developing complications if they do not adhere to their medications. Patients who have experienced more complications perceive a stronger relationship between medication non-adherence and AIDS-related complications, and are also more adherent to their medication regimen when compared to patients with no prior complications.
Although clinical experience and preliminary research suggest that some transgender people are at significant risk for HIV, this stigmatized group has so far been largely ignored in HIV prevention. As part of the development of HIV prevention education targeting the transgender population, focus groups of selected transgender individuals assessed their HIV risks and prevention needs. Data were gathered in the following four areas: (1) the impact of HIV/AIDS on transgender persons; (2) risk factors; (3) information and services needed; and (4) recruitment strategies. Findings indicated that HIV/AIDS compounds stigmatization related to transgender identity, interferes with sexual experimentation during the transgender 'coming out' process, and may interfere with obtaining sex reassignment. Identified transgender-specific risk factors include: sexual identity conflict, shame and isolation, secrecy, search for affirmation, compulsive sexual behaviour, prostitution, and sharing needles while injecting hormones. Community involvement, peer education and affirmation of transgender identity were stressed as integral components of a successful intervention. Education of health professionals about transgender identity and sexuality and support groups for transgender people with HIV/AIDS are urgently needed.
In Imperial China sexual behaviour was regarded as an indispensable activity to reach harmony with the universe, through the unity of the interaction of two opposing forces: yin and yang . Sexual intercourse was accepted when linked to procreation within a family context, while an individual's sexuality was not considered important. Homosexuality was tolerated although not advocated, while masturbation was denounced. Since the One Child Family and Open Door policies in the 1970s and the economic reforms of the 1980s, attitudes towards sexuality in China have changed. Premarital sex has become widely accepted among young people and people in China are now more tolerant toward extramarital sex. Nowadays young people consider that love should dominate marriage and the quality of an individual's sex life is currently more valued than it used to be. Attitudes towards masturbation have become more tolerant and though homosexuality has been hidden by society for a long time, in recent years it has begun to be considered as a legitimate lifestyle choice. Attitudes towards sex and sexual behaviour have become recognized as an individuals' responsibility as long as no offence occurs against society or the interests of other individuals, resulting in the recognition of diversity of sexual behaviour. As part of the changing attitudes to sex and sexual behaviour, heterosexual transmission is becoming the most important route of HIV transmission in China. This is complicated by the internal migration of an estimated 120 million labourers moving from the countryside to the cities as the result of economic reforms, most of whom are sexually active young men. Unless addressed directly, these factors may add to the estimated 300,000 HIV-infected Chinese, further fuelling an already rapidly spreading epidemic. The ramifications of the Chinese HIV epidemic will not only be felt within China, but also within the surrounding Asian countries thereby fuelling the HIV pandemic.
Little is known about the barriers which women living with HIV/AIDS encounter that impede their adherence to antiretroviral medication regimens. Yet in order to design effective interventions to improve women's adherence, it is first imperative to identify the factors that contribute to their non-adherence. The purpose of this study was to explore, from HIV-infected women 's own perspectives, the barriers they faced in adhering to combination antiretroviral therapies. Twenty HIV/-infected women were asked to keep a personal journal for a period of one month. In the journals, women wrote about what their lives were like while taking antiretroviral medications. Line-by-line open coding was done to identify major ideas and themes within the journal entries. Results showed that women faced six main barriers to adherence, those related to: (I) medication regimens, (2) side effects, (3) social relationships, (4) medication beliefs, (5) daily schedules, and (6) body weight. The findings underscore the difficult nature: of the antiretroviral regimens and illuminate the daily obstacles women face in adhering to therapy. Interventions that target women's unique barriers are needed to improve adherence to antiretroviral medication regimens.
People living with HIV disease, particularly those in small towns and rural areas, face many barriers that prevent them from receiving important life-care services. We developed the Barriers to Care Scale (BACS) to delineate the problem severity of factors that impede care and service provision among a sample of 226 men and women living with HIV disease in a single midwestern state. Both urban and rural respondents indicated that major barriers to life-care services included the lack of knowledge about HIV among citizens in the community, insufficient personal financial resources, the lack of employment opportunities for people living with HIV, and the lack of supportive and understanding work environments. Rural persons living with HIV disease, compared to their urban counterparts, assigned significantly higher problem severity ratings to the following barriers: the need to travel long distances to medical facilities and personnel; a shortage of adequately trained medical and mental health professionals; a lack of personal or public transportation; and community residents' stigma toward people living with HIV. The large number of barriers to care identified in the present study indicates that innovative programmes designed to remove these barriers and improve the life quality of rural persons living with HIV are urgently needed.
Non-adherence to medical regimens is a critical threat to the health of HIV-infected individuals. Patients who do not adhere to routine medical care cannot fully benefit from the increasingly efficacious treatments available to them. Consistent attendance at medical appointments plays a central role in both prolonging life and enhancing quality of life for persons living with HIV/AIDS. By identifying why many patients do not reliably attend medical services, interventions can be undertaken to improve appointment-keeping. The primary purpose of the present study was to identify factors predictive of HIV-related medical appointment attendance. One-hundred-and-forty-four outpatients in a public hospital ambulatory care HIV clinic were followed for seven months. Demographic, medical care and psychosocial factors were measured in order to prospectively predict the percentage of missed clinic appointments by persons with HIV disease. Greater outpatient appointment non-attendance was associated with younger age, minority status, less severe illness and lower perceived social support. Treatment duration, provider consistency, hopelessness and religious coping did not emerge as significant predictors of outpatient appointment-keeping in this sample. Practical and theoretical implications of these findings are discussed in light of recent medical advances in HIV/AIDS care.
Self-reports overestimate adherence compared to more objective measures such as electronic monitoring. However, self-report is the most feasible method for clinical settings; therefore, it is important to identify the context in which this method can provide an accurate assessment. To address whether self-reports are more accurate when missed doses are reported, we conducted a secondary analysis of data fi om a methodological study comparing multiple measures of adherence (including self-report and electronic monitoring) to a two-week placebo regimen mimicking HAART among 30 HIV-positive patients not on HAART. Results indicated a mean adherence of 85% and 62%, as measured by self-report and electronic monitoring, respectively. Self-report and electronic monitoring were not significantly correlated in the measurement of proportion of prescribed doses taken among the sub-group of 17 patients who reported missed doses (r = 0.22), nor among those who reported no missed doses, or the group as a whole. Using electronic monitoring as the validity criterion, these findings indicate that self-reports overestimate adherence even among patients who report missed doses.
This paper presents a model developed to advance the understanding of the relationship between sexual abuse and HIV risk among women. It is proposed that the relationship is mediated by many of the long-term sequelae of sexual abuse. The process of mediation is believed to occur through various causal pathways propelled by specific underlying mechanisms that increase the likelihood of HIV risk. The following causal pathways are proposed: (1) initiation of and/or increasing reliance on drug use as a method of coping with the sexual abuse experience, (2) problems with sexual adjustment related to sex risk taking, and (3) psychopathology (e.g. depression) which increases the likelihood of an individual participating in HIV risk behaviours. These hypothesized pathways are based on the characteristics and behaviours of individuals with histories of sexual abuse and do not take into account the influence of the individual's social environment. Increasingly, evidence suggests that understanding the social context of HIV risk is crucial to the development of preventive interventions. Therefore, a final pathway is explored which suggests that specific social network characteristics (e.g. network membership type, social support, and social isolation) influence HIV risk exposure opportunities among women with sexual abuse histories.
Men and women living with HIV/AIDS who experience difficulty maintaining safer sex practices place their sex partners as well as themselves at considerable risk for sexually transmitted infections. Psychological correlates of continued sexual risk behaviours provide important information for intervention development. Continued sexual risk behaviour was investigated in a sample of 203 HIV-positive men and 129 HIV-positive women recruited from infectious disease clinics and AIDS service agencies. The study showed that 42% of men and 42% of women reported at least one occasion of unprotected anal or vaginal intercourse in the preceding six months. Unprotected intercourse frequently occurred outside of long-term relationships and with partners who were not known to be HIV-infected. Similar to populations at primary risk, HIV-infected men and women reported alcohol and drug use, including use before sexual episodes. However, the association between substance use and unprotected sex was modest for men and absent for women. Contrary to previous research, emotional distress and maladaptive coping were not related to continued sexual risk. Interventions are urgently needed to support men and women living with HIV/AIDS in maintaining long-term safer sex practices.
We assessed gender differences in psychosocial and behavioural predictors of HIV testing and returning for results in a high-risk sample of 1,049 predominately minority, impoverished, homeless and/or drug-abusing women (n = 621) and men (n = 428). Predictors included latent variables representing injection drug use, self-esteem, social support, AIDS knowledge, poor access to health services, perceived risk for AIDS, sexual risk behaviour and the mediators of positive and negative coping styles. Significant predictors of test and return for women included injection drug use, greater social support, more AIDS knowledge, a higher perceived risk for AIDS and a positive coping style. Significant predictors for the men included injection drug use, greater AIDS knowledge, a higher perceived risk for AIDS and a positive coping style. Although greater social support was not significant for the men, the significant predictors of HIV testing and return were generally similar for the men and women. However, the men evaluated their risk of AIDS significantly lower than the women, although they reported more sexual risk behaviours and equally risky injection drug use behaviours. Results suggest that interventions designed to increase AIDS knowledge, to raise the perception of risk and to promote a positive coping style would be effective in encouraging more HIV testing for both men and women, but raising perceptions of what constitutes personal risk behaviours may need special emphasis when delivering prevention programmes to men.
This study reports the revival experiences of persons who once were reconciled to their death from HIV/AIDS but who, as a result of dramatic treatment responses, now believe they may survive (popularly known as the Lazarus Syndrome). A purposive sample of men and women living with HIV infection or AIDS were interviewed in six focus groups. As part of a larger study of uncertainty in HIV illness, participants described their uncertainty accompanying renewed health and a return to the joys and problems of continued life. While new discoveries about the disease and exciting antiretroviral therapies hold the promise of improved survival, ambiguity about the durability of treatment response and ultimate survival contribute to the level of uncertainty with which a patient must cope. The experience of uncertainty in the narratives about revival involved renegotiation. Participants described physical renewal as an unexpected new stressor forcing them to renegotiate: (a) feelings of hope and future orientation, (b) social roles and identities, (c) interpersonal relations, and (d) the quality of their lives. Implications for prevention, practice, research and theory are presented and suggestions for education and assistance are offered.
Among 230 HIV-positive women in New York City, we examined the association of retrospective self-reports of sexual and physical abuse, current coping strategies and depressive symptomatology (CES-D scores). Results revealed a high prevalence of abuse in childhood (50%) and adulthood (68%); 7% reported physical assault or rape in the last 90 days. As expected, childhood abuse was significantly correlated with both adult and recent trauma, and each type of trauma correlated with CES-D scores. Childhood abuse also positively correlated with the frequency of current adaptive and avoidant coping strategies, although avoidant coping had a stronger (negative) association with CES-D scores. Hierarchical regression analyses revealed the association between childhood abuse and CES-D scores persisted even after controlling for relevant demographic variables, more recent trauma and coping strategies. Implications for improving the psychological functioning of women living with HIV/AIDS are discussed.
This paper describes a preliminary study aimed at testing the efficacy of a brief medication counselling and behavioural intervention in improving adherence to combination antiretroviral medication therapy and prophylactic treatment among non-adherent men living with HIV. Twenty-one non-adherent HIV-positive men obtaining primary care clinical services at a Veterans Affairs Medical Center were recruited by health care providers. Intervention participants were primarily African-Americans with histories of intravenous drug use. During a period of five months, participants were provided with monthly medication counselling and a weekly medication pill organizer. Participants were compared with 21 non-adherent matched controls receiving standard pharmacy care including review of medications. Intervention and control subjects were compared on several variables: medication refill timeliness, appointment attendance, hospitalizations and opportunistic infections. Medical information was obtained from hospital and pharmacy records at baseline and post-intervention. Pre- to post-intervention rates of adherence to medication refills and clinic appointments increased significantly among intervention participants. Relative to matched controls, intervention participants also significantly increased drop-in visits and showed fewer hospitalizations. Intervention participants also showed significant decreases in the number of opportunistic infections. Results suggest that exposure to medication counselling and behavioural interventions increase adherence, with associated reductions in negative clinical outcomes.
A case control analysis within an ongoing cohort study was used to examine differences between seroconverters and men who remained HIV-negative. The cases were interviewed within one to 13 months prior to their seroconversion. Their responses to a structured questionnaire were compared with those of HIV-negative controls drawn from the same time period and from the same longitudinal study, Sydney Men and Sexual Health. Data collected from both cases and controls included: demographic and contextual variables, knowledge of HIV transmission, sexual practices, drug and alcohol use and attitudinal factors. The aim was to compare the sexual behaviours, and the social and cultural contexts of such behaviours, of men prior to their HIV seroconversion with men who did not seroconvert. Twenty-three men had seroconverted within the cohort. Cases were identified by a positive HIV antibody test or self-report of positive HIV status following a previous negative HIV test. Three-hundred-and-sixty-nine controls were selected on the basis of being HIV negative at interview in 1994, and having at least one subsequent medically-confirmed negative HIV antibody test. Univariate predictors of seroconversion were: being in a regular relationship with a known HIV-positive partner, drug use, and engaging in a range of anal and esoteric sexual practices. Practices commonly used to enhance sexual pleasure, such as group sex, watching and being watched having sex, the use of sex toys and dressing up/fantasy, were engaged in more frequently by seroconverters. Engaging in these esoteric sexual practices was highly correlated with drug use, involvement in the gay community and engagement in a wide range of anal practices. In the multivariate analysis independent predictors of seroconversion were: younger age; being in a regular relationship with a known HIV-positive partner; believing withdrawal to be safe with regard to HIV transmission; and range of esoteric practices. These results indicate the importance of the social and cultural contexts of particular sexual practices and consequent HIV transmission. Sexually adventurous men may be at increased risk for HIV because they seek sex within particular sexual sub-cultures.
The purpose of this study was to examine the relationships of coping, attachment style and perceived social support to perceived stress within a sample of HIV-positive persons. Participants were 147 HIV-positive persons (80 men and 67 women). Multiple regression analysis was used to examine the relationships of the demographic variables, AIDS status, three coping styles, three attachment styles and perceived quality of general social support with total score on the Perceived Stress Scale (PSS). PSS score was significantly associated with less income, greater use of behavioural and emotional disengagement in coping with HIV/AIDS, and less secure and more anxious attachment styles. These results indicate that HIV-positive persons who experience the greatest stress in their daily lives are those with lower incomes, those who disengage behaviourally/ emotionally in coping with their illness, and those who approach their interpersonal relationships in a less secure or more anxious style.
This study examines the relationships among health-related quality of life (HRQL), social support, sociodemographic factors and disease-related factors in persons infected with the human immunodeficiency virus (HIV) living in Venezuela. A sample of 118 HIV-infected persons living in Caracas, Venezuela, was surveyed using a written questionnaire that included a Spanish translation of the Interpersonal Support Evaluation List (ISEL) developed for this study, the Medical Outcomes Study Short Form-36 (SF-36) and a symptom inventory. All three instruments showed good internal consistency reliability. Multiple regression analyses were used to model SF-36 sub-scale scores as a function of symptoms, social support, HIV-status and use of antiretroviral drugs. The models explained between 16 and 39% of the variance in the different HRQL domains. Controlling for other variables in the model, level of symptomatology was significantly associated with all HRQL domains except social functioning and role-emotional scores. Social support was significantly associated with all HRQL domains except physical functioning and bodily pain. The use of antiretroviral drugs was significantly associated with social functioning. The study indicates the importance of social support to the quality of life of HIV-infected individuals in this culture.
The impact of pet ownership on depression was tested among a sample of gay and bisexual men (n=1,872). Multivariate analyses, controlling for demographics and baseline depressive symptomatology, showed that neither pet ownership nor the presence of HIV infection was associated with depression. Depression was influenced by the presence of AIDS and by having relatively few confidants. Analyses among HIV-infected men only showed that persons with AIDS who owned pets reported less depression than persons with AIDS who did not own pets. This beneficial effect of pet ownership occurred principally among persons who reported fewer confidants. These results suggest that by enhancing companionship for some HIV-infected persons, pets may buffer the stressful impact of AIDS.