Even in the era of 'highly active antiretroviral therapy', AIDS remains an important cause of morbidity and mortality in many adult populations and attention to palliative and end-of-life issues is still an essential aspect of clinical care. Little is known about HIV-infected individuals' life priorities as they approach the end-of-life and the extent to which this influences their goals and preferences for health care. Limited empirical research has focused on understanding the preferences of dying patients, their family's awareness and acceptance of their wishes, and the context in which these preferences are expressed. Specifically, little is known of the particular care priorities and quality of life issues facing patients dying of HIV. These issues are particularly important to investigate in African-American and Latino populations, which are disproportionately affected by HIV/AIDS. This investigation is addressing this critically under-explored area. The study's overall objective is to obtain exploratory, descriptive information that will inform these critical gaps in the knowledge base and provide insights for clinical management of HIV patients at the end of life.
The specific aims are: (1) To explore the understanding and perceptions about illness of patients with advanced HIV/AIDS as they approach end-of-life; (2) To explore the priorities of individuals with advanced HIV/AIDS as they approach end-of-life; (3) To obtain insights that can be used to enhance communication between dying patients and their familial caregivers; (4) To obtain insights that can be used to enhance communication among dying patients, their familial caregivers and health care providers; and (5) To examine the circumstances of patients' deaths in relationship to the expressed patient and familial caregiver life and care goals at end-of-life. To accomplish the study objectives, we plan to conduct intensive, in-depth, interviews with 144 persons with advanced HIV/AIDS and their familial caregiver. Patients and their familial caregiver will each participate in two individual, face-to-face research meetings with a clinician researcher. A post-death interview will also be conducted with the familial caregiver if the patient dies within the follow-up period. The racial and ethnic distribution of the sample will reflect the heavy toll of HIV/AIDS on minority populations.
| Krug, Rachel; Karus, Daniel; Selwyn, Peter A et al. (2010) Late-stage HIV/AIDS patients' and their familial caregivers' agreement on the palliative care outcome scale. J Pain Symptom Manage 39:23-32 |
| Sacajiu, G; Raveis, V H; Selwyn, P (2009) Patients and family care givers' experiences around highly active antiretroviral therapy (HAART). AIDS Care 21:1528-36 |
