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Young men of color who have sex with men (yMSM) living with human immunodeficiency virus (HIV) in syndemic environments have been difficult-to-retain in care resulting in their being at-risk for poor health outcomes despite availability of effective once-daily antiretroviral treatment (ART). Multiple methods have been implemented to improve outcomes for this cohort; none with sustainable results. Outpatient HIV staff themselves may be a contributing factor. We introduced multidisciplinary staff to the concept of using a palliative approach early (ePA) in outpatient HIV care management to enable them to consider the patient-level complexity of these young men. Young MSM (18-35 years of age) enrolled in and cared for at the intervention site of the Care and Support Access Study (CASA), completed serial surveys over 18 months. Patients’ Global and Summary quality of life (QoL) increased during the study at the intervention site (IS) where staff learned about ePA, compared with patients attending the control site (CS) (p=.021 and p=.018, respectively). Using serial surveys of staff members, we found that in the era of HIV disease control, outpatient staff are stressed more by environmental factors than by patients’ disease status seen historically in the HIV epidemic. A Community Advisory Panel of HIV stakeholders contributed to all phases of this study and altered language used in educational activities with staff members to describe the patient cohort.

Male inmates with HIV/AIDS being served by case-management programs for those seriously ill in jails in Los Angeles ( n = 34) and New Orleans ( n = 20) are described and compared. At both sites, most were Black and poor with a history of substance abuse. Psychological functioning (Mental Health Inventory [MHI-5]) scores indicated poor mental health. Inmates reported an average of more than 10 symptoms, and at least 25% reported needing multiple medical, practical, and social services. These findings document a subpopulation of jail inmates who are seriously ill with HIV/AIDS, and they describe the potential care and service needs of such inmates. Given the chronicity of HIV/AIDS and the importance of strict adherence to treatment protocols, it is important not only to facilitate access to care and services for inmates but also to secure continuity of care and access to services when inmates are transferred to another facility or released into the community.

Self-reports of 32 symptoms and their treatments were obtained from patients of three palliative care programs that provide services to seriously ill HIV patients (≥95% AIDS) in Alabama (n=47), Baltimore (n=91), and New York City (n=117). On average, patients reported 10.9 (SD=7.6) to 12.7 (SD=6.2) symptoms. Pain, lack of energy, and worrying were reported by a majority of patients at all sites, often with a high level of associated distress. For only four symptoms (pain, nausea, difficulty swallowing, and mouth sores) did half or more of patients at all sites experiencing the symptom also report treatment. Less than a third of patients experiencing 12 symptoms (five of six comprising a psychological subscale) reported treatment. Results show that despite the availability of more efficacious treatments, many HIV/AIDS patients continue to experience significant physical and psychological symptomatology. Many of those experiencing symptoms, however, do not perceive their symptoms as being treated.

Despite prolonged survival and improved quality of life as a result of treatment advances for HIV/AIDS, thousands still suffer with the disease and 15-16,000 a year die in the United States alone. Little is known about those patients with HIV/AIDS who still require palliative care services or the types of services needed. This paper describes the program elements and clients of three programs providing palliative care to persons with HIV/AIDS in Alabama (n = 41), Baltimore, Maryland, (n = 55), and New York City (n = 52). Also presented are the prevalence of need for 27 services as assessed by clients and staff, the level of agreement found between client and staff assessments at each site, and services for which prevalence of need varied among programs. Interviews were conducted between June 2000 and October 2002. The majority of clients at all programs were socioeconomically disadvantaged, persons of color, and had a history of substance abuse, although significant differences were noted in the distributions of clients at each program with regard to these characteristics. Greater differences were observed among programs in the prevalence of need reported than were found between reports of clients and staff at the same program. Despite these differences, a common set of medical (ambulatory/outpatient care, laboratory testing, pharmacy) and ancillary (nutritional counseling, transportation) services was identified by at least 25% of clients and staff at each program. These findings suggest that need, beyond a core of medical and ancillary services, is relative and best conceptualized as a mixture of need, demand, and supply. The need for a mix of "care" and "cure" services identified reflect the erratic disease trajectory experienced by some clients who move in and out of treatment as well as the vulnerability and marginalized lives of the clients served by these programs.

Recent advances in the treatment of HIV infection, particularly those associated with the advent of a new class of medications--protease inhibitors (PIs)--have focused interest on the problem of medication non-adherence. Earlier research on antivirals suggests that patient attitudes toward a medication or treatment play an important role in influencing its use. Attitudes toward PIs were explored using data from a study of late middle-aged and older adults (ages 50-67) living with HIV/AIDS (N = 38) who had been or were currently users of PIs at the time of accrual in late 1997. Comparisons were made between African American and White men with regard to perceptions of: medication efficacy, self-efficacy, physician competence, quality of life, side effects, skipping medication doses and the timing of protease initiation. Results of these analyses suggest significant differences between White and African American men. African American men not only expressed significantly more doubt regarding their ability to utilize PIs and adhere to PI treatment regimens than Whites, but also reported significantly more doubt regarding physician competence with regard to PIs. African American men were also more likely than Whites to question the timing of their initiation of treatment with PIs. The findings suggest that these racial differences may be important for creating patient education strategies and the targeting of non-adherence prevention efforts.

Depressive symptoms, social competence, and behavior problems of prepubescent children bereaved within 18 months of parental death from cancer (57 families, 64 children) or suicide (11 families, 16 children) were compared. Most children reported normative levels of depressive symptoms. Children whose parents died from suicide, compared with those whose parents died from cancer, reported significantly more depressive symptoms, involving negative mood, interpersonal problems, ineffectiveness, and anhedonia. Parental reports of children's competence and behavior were similar to a normative sample of children and did not differ between the children bereaved by parental cancer or suicide. Additional research should focus on other factors, such as family psychopathology, stresses, and impact of stigma, which may influence the course of bereaved children.

To date, little empirical research on the association of coping style with mood in HIV-positive women has been carried out. The extant literature on HIV-positive men suggests that active coping is related to diminished distress while avoidant coping is associated with elevated distress. Previous research with HIV-positive women has not consistently confirmed these relationships. To add to this literature, scores from a sample of 145 HIV-positive women who completed the Ways of Coping Questionnaire and the Mental Health Inventory were analyzed. Correlations indicated that an escape-avoidance strategy was associated with more negative emotions. Other strategies related to negative emotions included accepting responsibility and a self-controlling approach. These findings are consistent with those previously reported for HIV-positive men, suggesting that similar kinds of coping strategies may be associated with positive and negative moods among HIV-positive men and women.

Data collected as part of a psychosocial study of gay and bisexual men's experiences of living with HIV infection as a chronic illness were examined to investigate the psychological impact of the perceived availability of illness-related support and negative illness-related network interactions in a sample of men from this population. The sample was comprised of 144 HIV-infected non-Hispanic white, African American, and Puerto Rican Men living in the New York City metropolitan area. Analyses found evidence of a conjoint (interactive) effect between perceived support and negative network interactions. There was no evidence of either perceived availability of illness-related network support buffering or negative illness-related network interactions amplifying the effect of HIV/AIDS-related physical symptomatology on depressive symptomatology.

Objective To compare predeath and postdeath levels of depression and anxiety reported by a sample of children who lost a parent to cancer ("study children") with the levels reported by children in a community sample who did not experience such a loss. Method Tscores for depressive symptomatology (Children's Depression Inventory) and state and trait anxiety (State-Trait Anxiety Inventory) were compared. Both samples were weighted to control for multiple participants from the same family. Weights for children in the community sample were further adjusted to match the distribution of the two samples with regard to gender, age, and number of children in the household. Comparisons were made using t tests and χ 2 tests. Results Whereas study children reported significantly higher levels of depression and anxiety in the predeath period, levels of symptomatology reported for both measures postdeath were similar in both samples. Discussion The data suggest that while many children experiencing the loss of a parent to cancer report elevated levels of depression and anxiety predeath, by 7 to 12 months postdeath their reports of depression and anxiety are comparable with those of similarly situated children in the community who did not experience such a loss.

While the positive functions of social network interactions in ameliorating the effects of life stress are widely documented and acknowledged, a growing body of research investigations has demonstrated that social relationships can concurrently be a source of stress and that actions intended to be supportive may instead be experienced as psychologically disturbing. Data from a study of the social support experiences of gay men diagnosed with AIDS were examined to determine the contribution to the men's depressive mood of positive and negative network interactions (n = 83). Although the results are consistent with the social support literature regarding the beneficial effect of positive network interactions for seriously-ill individuals, the findings also indicate that negative illness-related network interactions are associated with decreases in depressive mood, as indicated by scores on the Center for Epidemiological Studies of Depression Scale (CES-D). The findings also demonstrate the additive effects of positive and negative network interactions and clearly point out the value of investigating the complexity and multiple functions of social interactions.

Although a substantial number of children experience serious parental illness and death, the adjustment problems attendant to the stress of having a fatally ill parent have not been examined systematically. This paper compares the psychosocial adjustment of 62 school-aged children with a terminally ill parent (study sample) with that of children in a community sample, using several standard rating scales. Study children had significantly higher levels of self-reported depression (Children's Depression Inventory) and anxiety (State-Trait Anxiety Inventory) and lower self-esteem (Self-Esteem Inventory). Parents also reported study children's significantly higher behavior problems and lower social competence (Child Behavior Checklist). Increased professional attention to this vulnerable population is encouraged.

Objectives: To examine the associations between various patient, disease, situation, and caregiver characteristics (organized by five conceptual domains) and global self-esteem among caregiver daughters to parents with cancer. Method: Dyads comprised of 237 cancer outpatients and their adult caregiving daughter completed structured telephone interviews. Results: Two of the five domains of potential correlates significantly predicted caregiving daughters’ global self-esteem—daughters’ sociodemographics and constraints on/facilitators of caregiving. Daughters’ overall sense of self-worth was directly correlated with their household income and inversely correlated with greater depressive affect and the number of patient needs for which someone else provided assistance. It was also correlated with the daughters’ other role obligations. A higher sense of self-worth was associated with either being employed or having to care for a child/grandchild; a lower sense of self-worth was associated with having a spouse/partner. Discussion: The present analysis documents the complexity of social connectedness, demonstrating that various role obligations contribute to caregiving daughters’ global self-esteem in different ways. In the context of assuming cancer careprovision, daughters’ existing repertoire of social roles may possibly mediate the stress associated with their care involvement or serve as a buffer against the strain of the caregiving experience.

This study compares the self-assessments of 67 late-stage HIV/AIDS patients regarding their symptomatology, sense of self-worth, and several other aspects of their health-care situation, to assessments of that situation provided by their informal caregivers. As part of a dyadic study of care preferences, the patients and caregivers independently completed nearly identical versions of the Palliative Care Outcome Scale, a short 10-item measure of the patient's current health, social, and psychological status. The participants in the study were recruited from inpatient and outpatient services at an urban medical center. Substantial or moderate agreement, assessed by weighted kappa, was found between patient and caregiver assessments with regard to only four items assessing physical or emotional states of the patient (pain, other symptoms, anxiety, and life worthwhile). Fair or slight agreement was found for the six remaining items, including those assessing the patient's sense of self-worth, family/friends' anxiety, interactions with family/friends, and practical matters. Mean ratings of self-worth were significantly different for patients and caregivers. These findings underscore the clinical need to assess patient care outcomes directly, and they suggest the importance of facilitating more effective communication about relevant health issues among seriously ill patients, caregivers, and health-care providers.

One hundred eighty four families completed a twelve month parent-guidance (experimental) or a parent telephone-monitoring (comparison) intervention initiated during one parent's terminal cancer illness and continued until six months after the death. Children in the parent-guidance intervention reported greater reduction in trait anxiety and greater improvement in their perceptions of the surviving parent's competence and communication, a primary goal of the intervention. Identified problems in implementing evaluations of experimental interventions with bereaved children include the following: (1) Available and commonly used standardized psychopathology measures do not adequately capture changes in non-psychopathological but bereaved distressed, grieving children and adolescents. (2) Experimental and control samples usually have very few children with psychopathology (scores). Relatively small changes in scores within the normal range may be insufficient to allow measurement of meaningful differences between interventions. (3) Both experimental and control interventions must provide sufficient help to retain families for later evaluation. The level of general support and referral for other treatments, if adequately done, may be sufficient to blur differences in standardized psychopathology measure scores between any two interventions. It may only be in the specifically targeted intervention area that differences can be expected to be significant in adequately resourced families.

Objective:To describe mental health status and its correlates among clients of three palliative care programs targeting underserved populations.Methods:Mental Health Inventory (MHI-5) scores of clients from programs in Alabama (n= 39), Baltimore (n= 57), and New York City (n= 84) were compared.Results:Mean MHI-5 scores did not differ among sites and were indicative of poor mental health. Significant differences were noted among sites with regard to client sociodemographics, physical functioning, and perceptions of interpersonal relations. Results of multivariate regression models estimated for each site suggest variation in the relative importance of potential predictors among sites. Whereas poorer mental health was primarily associated with history of drug dependence at Baltimore and more physical symptomatology at New York, better mental health was most strongly correlated with more positive perceptions of interpersonal relationships at Baltimore and increasing age and more positive perceptions of meaning and purpose in life at New York.Significance of results:The data presented suggest the importance of assessing clients' history of and current need for mental health services. Evidence of a relationship between positive perceptions of meaning and purpose and better psychological function underscores the importance of existential issues for the overall well-being of those who are seriously ill.

Background: The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.

Objectives. We compared level of psychosocial distress of HIV-infected women living in New York City before the advent of highly active antiretroviral therapy (HAART) with level of psychosocial distress reported by women living with the disease after the use of HAART became widespread. Methods. Data were from HIV-positive New York City women aged 18 to 50 years, enrolled through outreach and self-referral. We compared scores on measures of psychological state and psychosocial adjustment to illness of 74 women interviewed in 1994–1996 with scores of a matched group of 74 women interviewed in 2000–2002. Results. A significant difference between groups was found only with regard to adjustment to illness in their domestic environment, with poorer adjustment reported, on average, by women in the 2000–2002 sample. Conclusions. Although new treatments have significantly improved the physical health of those living with HIV/AIDS, no evidence was found that these treatments significantly improved psychological health for women, regardless of history of protease inhibitor use.

Longitudinal data from a sample of gay men living with AIDS (N = 128) were used to assess the relationship of change in various individual and situational correlates with change in depression. Results of regression analyses suggest that changes in physical symptomatology, in the number of bed days, and in the perceived sufficiency of social support are significantly correlated with concurrent change in depressive symptomatology. There was no evidence of change in the perceived sufficiency of social support buffering or amplifying the relationship of change in physical symptomatology with change in depression. The findings illustrate the need for the use of panel data (i.e., repeated assessments of the same individuals) and the assessment of change in both distress and its correlates among individuals living with AIDS.

AIDS-related research relies primarily on self-reports of sexual practices. Therefore, determining which data collection methods yield more candid information is critical. Data from a study of gay men's sexual adaptations to the AIDS epidemic provided an opportunity to explore the congruence of data collected using a self-administered questionnaire with data from an unstructured face-to-face interview designed to facilitate report of sexual risk behavior. We examined (i) the concordance of questionnaire and unstructured interview risk ratings when the two data sources are scored for the same 16 sexual behaviors; (ii) the concordance of questionnaire ratings and ratings obtained when all information on recent sexual practices available from the unstructured interview is considered; (iii) the relationship between serostatus and both concordance patterns between methods; and (iv) the difference by serostatus of reported risk level within method. Riskiest behaviors were reported on the questionnaire for all serostatus groups. Riskier behaviors were more likely to be reported on the questionnaire while more characteristic, safer behaviors were discussed in interview, regardless of HIV serostatus. The advantages of a combined methods--questionnaire/interview--strategy for sexual practice research are discussed.

• To examine the consequences of adolescent drug use on the psychosocial and health functioning of young adults, we followed up 1004 young men and women from age 15 or 16 years to age 25 years. The use of four different classes of drugs was examined: cigarettes, alcohol, marijuana, and other illicit drugs. Twenty outcomes were examined, including continuity of participation in work and in family roles, level of education, delinquent activities, self-reported health and psychological symptoms, and use of five drug classes in early adulthood (including prescribed psychoactive medications). The effects of marijuana and of other illicit drugs could not be disentangled, so these drugs were treated as a single class. Controlling for initial individual differences in adolescence, use of the three major drug classes between adolescence and early adulthood affected most of the outcomes examined; most strongly continued use of the same substance. Unique drug effects included those of illicit drugs on increased delinquency, unemployment, divorce, and abortions, and of cigarettes on lowered psychological mood. Illicit drugs predicted drug-related health problems, whereas cigarette use predicted increased breathing difficulties.

Findings from a study of the testing and treatment behaviour and experiences of African-American (n = 31), Puerto Rican (n = 30) and non-Hispanic white (n = 23) HIV-infected women are reported. All women were 20-45 years of age and had not yet been diagnosed with AIDS. Data for the analyses presented were gathered through an interviewer-administered questionnaire completed before respondents participated in an unstructured interview. The analyses examine race/ethnic differences in women's delays in seeking testing and medical care, and in sources and types of HIV-treatment. Most significant for primary and secondary prevention efforts, the findings suggest that a significant proportion of women who suspect they are infected may delay being tested, and further, a substantial proportion who learn they are seropositive may delay seeking medical care. Thus important opportunities among HIV-infected women for secondary prevention through timely antiviral and prophylactic treatment, and for primary prevention through risk-reduction counselling may be being missed in many cases.