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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.

Cancer remains a leading cause of death, especially among older adults. While spouses are commonly involved in the provision of emotional and practical assistance to their ill spouse, their caregiving is not without cost. Although knowledge of an impending death permits preparation for the loss, a long and protracted illness, or one marked by intense caregiving demands, can deplete the well spouse’s personal resources, increasing the risk of morbid bereavement outcomes. Well spouses (n=138), aged 50 and older (mean age 63.6), 41% male, providing 8+ hours of caregiving to a spouse with advanced cancer and a life expectancy of 6 months or less were followed over the terminal illness period. Caregiving spouses’ anticipatory grief, depression and anxiety were all significantly, inversely correlated with sufficiency of social support, specifically tangible, informational and emotional support (p

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.

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.

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.

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.

• 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.