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Little is known about the priorities and end-of-life care preferences of older adults living with advanced HIV/ADS, although palliative and end-of-life issues are essential aspects of their care. Even less attention has been focused on their informal support network, who provide emotional support, practical assistance and function as surrogate decision-makers. Data is drawn from a mixed methods investigation on care preferences and life goals at the end-of-life. Older (50+), minority (59%-Black, 28%-Hispanic), low-income adults living with advanced HIV/AIDS and their informal caregiver (n= 29 dyads) completed a survey and comprehensive interview in English or Spanish. Both patients and caregivers reported a high communication quality -- 83% (patients) 72% (caregivers) ‘definitely agreed’ that: “Caregiver knows kinds of treatment patient would want if patient got too sick for speak for him/herself”. The narratives substantiate that while there is concordance on a number of important care considerations, fundamental differences in choice of end-of-life care co-exists within some dyads. When present, these differences intensify caregivers’ distress associated with their execution of surrogate decision-making. The accounts also document that shared misperceptions of consensus on the care choice can occur within a dyad. Further the reports revealed the fluid and situational nature of patients’ priorities for care; resulting in some instances in the caregivers being unaware of the change. Appreciation of the complexity of these issues, and recognition of the necessity to include social context considerations, will enhance timely communication between the health care team, patient and caregiver to facilitate person-centered care.

Background: In the US, more than 1.2 million adults are living with human immunodeficiency virus (HIV); gay and bisexual men account for 82% of new diagnoses annually. Young men of color account for 67% of this total. Despite advances in disease control, lack of retention in care itself remains a barrier and how outpatient staff members impact this has not been investigated. The palliative approach is patient-centered care targeting "relief of suffering" and "quality of life." This paper describes the original protocol for the Care and Support Access Study (CASA) where outpatient HIV staff members are challenged to improve outcomes for young men who have sex with men (yMSM) by integrating the palliative approach early (ePA) with HIV care delivery. Methods: The hypothesis is that ePA can favorably impact outcomes for yMSM in one HIV clinic compared with treatment as usual (TAU) at a second clinic. In the era of HIVdisease control, we use a quasi-experimental design with mixed methods to compare patient-level outcomes at 2 HIV clinics. The intervention fosters incorporation of the ePA with care provision using didactic and iterative education. We survey HIV staff members with regard to stress of care-giving. Qualitative interviews will highlight impact of the experience. Objectives: This paper reviews the aims of the study including: 1) compare outcomes of yMSM receiving care from staff using the ePA to those receiving TAU; 2) compare work-related staff stress at a clinic receiving the ePA with staff providing standard HIV outpatient care; and 3) refine, deliver and determine the acceptability and applicability of interdisciplinary professional education to deliver the ePA in HIV management. Discussion: We will measure the impact of the ePA on care delivery relative to patientcentered benefits. Lessons learned can contribute to a model for working with diverse patients facing challenging life transitions.

Although HIV continues to evolve as a treatable chronic disease, aging with HIV still carries a burden of significant morbidity and mortality. Limited attention has been focused on older HIV-infected individuals, many of whom have been living with HIV for over a decade. This investigation explored the life priorities and goals of care of a diverse (White, 6.9%; Black, 58.6%; Hispanic 27.6%; Other, 6.9%) sample (n=29) of older (mean age 55.03, SD 4.51) men (51.7%) and women (48.3%) living with advanced HIV/AIDS as they approached the end-of-life. Participants completed a survey and in-depth interview. Data collection was conducted in English or Spanish. Interviews were audiotaped, translated, if necessary, into English and transcribed. Analyses indicated that the majority most of the time felt life was worthwhile (81.9%) and that they felt good about themselves as a person (87.8%). They also endorsed the importance of being at peace with oneself (96.8%) and the importance of one’s life having meaning (96.8%). Their narrative accounts were subjected to content analysis that discerned themes relevant to their priorities and goals of care as they approached the end-of-life. Burdened with multiple physical symptoms, such as pain, numbness/tingling in extremities, difficulty sleeping and fatigue, their comments revealed the importance of active engagement with family and friends, a longing to return to the normal routine of daily life, a wish to be able to resume working, and ultimately, hope for a calm and peaceful death. These findings support the value of integrating palliative care with symptom management.

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.

As more elderly people experience a cancer diagnosis and live longer, the psychological sequelae of the disease and its treatment increasingly becomes a central concern. Cancer and its treatment are likely to present significant adaptive challenges to the elderly. Knowledge of the correlates of depressive symptoms in older patients may help to identify patients who are at increased risk for co-morbid depression and to inform the development of programs and services that can help reduce depressive symptoms. Data from 169 outpatients with cancer (aged 60 to 86 years) were included in an analysis to estimate a model of patients' depressive symptoms using the Center for Epidemiologic Studies Depression Scale. The results of regression analyses indicated that a college degree and a lesser impact of the disease on patients' social functioning correlated with lower depression and that feeling separated or set apart from others and a wider range of negative interactions with one's support network correla...

Psychosocial adjustment to living with HIV/AIDS was examined in a purposive sample of 146 New York City, African-American, Puerto Rican, and White non-Hispanic women using the Psychosocial Adjustment to Illness Scale, self-report version (PAIS-SR). Puerto Rican participants reported significantly more problems than African-Americans on the Summary Scale and the Domestic Environment and Psychological Distress domain subscales and significantly more problems than either Whites or African-Americans on the Social Environment domain subscale. Problematic sexual relationships were found to be significantly associated with race/ethnicity, although scores did not differ significantly between any two groups. On average, women in all three racial/ethnic groups reported high levels of psychosocial adjustment problems to their illness relative to normative data for cancer patients. These findings suggest that, while all HIV-infected women may be at risk for problematic psychosocial adjustment to living with HIV/AIDS, Puerto Rican women may be especially vulnerable.

The association between HIV disease progression (asymptomatic, symptomatic, AIDS) and mental health and psychosocial adjustment was examined among 144 men living in the New York City metropolitan area who had sex with men. While mean levels of mental health reported by the men did not differ by disease stage, mean levels of psychosocial adjustment did, with asymptomatic participants reporting significantly higher levels of adjustment on average, than those with AIDS. The data indicated that gay and bisexual men with HIV or AIDS were at risk of intrapsychic distress throughout the disease course, but the likelihood of problematic adjustment associated with their social interactions appeared to increase with the progression of the disease. The data also revealed that the men reported relatively high levels of psychological symptomatology and low levels of psychosocial adjustment compared to normative general population samples, and lower levels of psychosocial adjustment compared with some samples of individuals having other acute or chronic conditions. The implications of these findings for community psychologists are discussed. © 1996 John Wiley & Sons, Inc.

BACKGROUND As a consequence of advances and changes in the detection and treatment of cancer, increasing demands are being placed on familial caregivers of elderly cancer patients. Understanding the factors that place familial caregivers at risk of poor psychological outcomes and threaten their ability to provide adequate care is important for maintaining chronically ill patients in the community. METHODS Dyads comprised of 164 cancer outpatients (ages 60-90 years) and their adult caregiving daughter completed structured telephone interviews. Hierarchical regression was used to determine the individual and cumulative effect of five domains of potential predictors on the daughters' depressive symptomatology (Center for Epidemiologic Studies Depression Scale [CES-D]). RESULTS The domains that were shown to be significantly predictive of a daughter's level of depressive symptomatology were daughter sociodemographics, constraints on/facilitators of caregiving, and caregiver burden. The domains of disease/patient characteristics and the daughter's appraisal of the caregiving situation were not found to be significant. The total model suggests that having a health-limiting condition, a greater sense of filial obligation, and greater caregiver burden were correlated with higher CES-D scores, whereas having graduated college, having other social roles, having favorable attitudes regarding her caregiving experience, and providing care in a greater number of domains of care were correlated with lower scores. CONCLUSIONS These findings demonstrate the importance of focusing on situational factors that may function to constrain or facilitate caregiving when investigating caregiver depression. Cancer 1998;83:1652-1663. © 1998 American Cancer Society.

The relationship of race and ethnicity with standardized measures of depressive symptomatology and mental health was examined in a sample of HIV-infected African American (n = 48), Puerto Rican (n = 50), and White non-Hispanic (n = 48) women in New York City. Mean scores of women from all three racial and ethnic groups were higher than those reported for normative samples on measures of depressive symptomatology and psychological distress, and mean scores on measures of psychological well-being were lower. Puerto Rican women reported significantly higher levels of depressive symptomatology than either African American or White women. Puerto Rican women also reported significantly higher levels of psychological distress and lower levels of psychological well-being than African American women. The findings suggest that while all HIV-infected women are at risk of poor adjustment, Puerto Rican women may be especially vulnerable. They also point to the need for future research to determine what factors in these women's lives are predictive of adjustment, especially those factors amenable to intervention. © 1998 John Wiley & Sons, Inc.

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.

A two-stage study was undertaken of outpatients with advanced cancer who were receiving chemotherapy. In Stage 1 of the study, their needs for practical services and the barriers to those needs being met were assessed. Based on these results, an intervention was designed to reduce the prevalence of patients' unmet needs. The intervention was an automated telephone needs assessment coupled with social worker follow-up. The efficacy of this intervention was evaluated using an independent sample in Stage 2 in an experimental trial. Patients in the experimental group (n = 109), who received three automated surveys, reported fewer unmet needs in a subsequent comprehensive assessment than those in the control group (n = 130). The computerized telephone outreach system proved to be a cost-effective and reliable method for the early identification of unmet patient needs soon after they emerge and efficient deployment of limited professional staff.

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.

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.

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.