Young Same-Gender-Loving Men (SGLM) Living with HIV Continue to Experience Symptoms that May Impair Their Retention in Care.

Over half of HIV infections in the U.S. are among young gay, bisexual, and other same-gender-loving men (SGLM). Symptoms affecting these individuals must be clarified in order to be detected and addressed by health care providers. This report describes the symptom prevalence in young SGLM living with HIV. Study participants in an urban context experienced high symptom burden with a median of 6.2 symptoms despite antiretroviral treatment with viral suppression. Most common symptoms included fatigue (57%), depression (54%), insomnia (53%), anxiety (44%), dizziness (33%), and headache (33%). This study showed that young SGLM with HIV experience a high number of symptoms given their age. Health care providers should work to alleviate this symptom burden that affects patients' quality of life and may influence engagement in care.

Early Use of the Palliative Approach to Improve Patient Outcomes in HIV Disease: Insights and Findings From the Care and Support Access (CASA) Study 2013-2019.

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.

Late-stage HIV/AIDS patients' and their familial caregivers' agreement on the palliative care outcome scale.

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.

Examining the social context in the caregiving experience: correlates of global self-esteem among adult daughter caregivers to an older parent with cancer.

OBJECTIVE: 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.

Health status and service needs of male inmates seriously ill with HIV/AIDS at two large urban jails.

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.

Patient reports of symptoms and their treatment at three palliative care projects servicing individuals with HIV/AIDS.

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 (>or=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.

Evaluation of a preventive intervention for bereaved children.

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.

Psychosocial characteristics of New York City HIV-infected women before and after the advent of HAART.

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.

Service needs of patients with advanced HIV disease: a comparison of client and staff reports at three palliative care projects.

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.

Racial disparities in sexual risk behaviors and drug use among older gay/bisexual and heterosexual men living with HIV/AIDS.

Adults over age 50 comprise 11% of yearly AIDS cases, yet little is known about their sexual risk behaviors and drug use following diagnosis with HIV/AIDS. The present questionnaire study examines potential racial differences in sexual risk and drug use behaviors among 59 HIV-infected gay/bisexual and heterosexual men over age 50 who were recruited from HIV-related organizations in New York City between 1996-1998. The majority (59%) of older men reported unprotected sex since diagnosis, and 36% had done so in the past six months. African-American gay/bisexual men (n=12) were significantly more likely than white gay/bisexual men (n=32) to report unprotected vaginal/anal sex in the past six months (67% versus 22%, p<0.01), since diagnosis (42% versus 9%, p<0.05), and to report a history of intravenous drug use (50% versus 3%, p<0.01), but did not differ from heterosexual African-American men (n=15). No differences were found in reports of unprotected oral sex or recent use of hard drugs (i.e., crack, cocaine, heroin). These findings suggest that interventions targeting older African-American men (both gay/bisexual and heterosexual) with HIV/AIDS are needed to reduce risk behaviors and prevent HIV transmission in this population.

Mental health status of clients from three HIV/AIDS palliative care projects.

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.