Late-Stage HIV/AIDS Patients' and Their Familial Caregivers' Agreement on the Palliative Care Outcome Scale

Abstract

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, patients and caregivers independently completed nearly identical versions of the Palliative Care Outcome Scale (POS), a short ten-item measure of the patient's current health, social, and psychological status. 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 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.

Perceived Mental Health Status of Drug Users with HIV: Concordance Between Caregivers and Care Recipient Reports and Associations with Caregiving Burden and Reciprocity

“…In such cases, informal caregivers may be called on to make decisions as the care recipients’ proxy 7,8,9 . Due to recipients’ closer contact with caregivers than with medical providers, caregivers may be in the best position to make medical decisions for care recipients 7,9 .…”

“…Studies of concordance in ratings between caregivers and care recipients with regard to recipients’ physical and mental health have been focused on cancer caregiving 8,10 . Studies have demonstrated concordance in caregivers’ and care recipients’ ratings of pain and observable physical symptoms, but indicate less agreement on recipients’ mental health status 8,11,12,13 .…”

“…Studies have demonstrated concordance in caregivers’ and care recipients’ ratings of pain and observable physical symptoms, but indicate less agreement on recipients’ mental health status 8,11,12,13 . Specifically, caregivers tend to rate recipients’ mental health problems as more prevalent and severe than do care recipients 8,14,15 . This discordance in ratings of recipients’ mental health status may be affected by caregivers’ own levels of depression or caregiver burden 8,16,17 .…”

“…Specifically, caregivers tend to rate recipients’ mental health problems as more prevalent and severe than do care recipients 8,14,15 . This discordance in ratings of recipients’ mental health status may be affected by caregivers’ own levels of depression or caregiver burden 8,16,17 . For example, previous research has found more discordance in ratings of pain with depressed caregivers, such that they rate their care recipients’ pain higher than recipients rated their own pain 16 .…”

Characteristics relating to the interiorization of acquired immunodeficiency syndrome in Brazil: a cross-sectional study

“…This decrease in mortality began in 1996 with the provision of free HAART for HIV-infected individuals in Brazil. However, AIDS remains a serious and incurable disease in spite of the therapy, and, when untreated, can lead to death resulting from opportunistic diseases and comorbidities [4]. …”