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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.

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.

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.

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.

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.

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.