Prognostic awareness and communication preferences among caregivers of patients with malignant glioma
| Autor: | Kara Buda, Maria Kryza-Lacombe, Justin Buthorn, R Walker, Thomas A. D'Agostino, Kelly M. Shaffer, Allison J. Applebaum, Eli L. Diamond |
|---|---|
| Rok vydání: | 2017 |
| Předmět: |
Adult
Male medicine.medical_specialty Poor prognosis Health Knowledge Attitudes Practice Psychological intervention Experimental and Cognitive Psychology Disease Article 03 medical and health sciences Young Adult 0302 clinical medicine Glioma Health care medicine Humans Family Psychiatry Aged Terminal Care business.industry Brain Neoplasms Communication Middle Aged medicine.disease Psychiatry and Mental health Oncology Caregivers 030220 oncology & carcinogenesis Family medicine Life expectancy Female business Healthcare providers Psychosocial 030217 neurology & neurosurgery |
| Zdroj: | Psycho-oncology. 27(3) |
| ISSN: | 1099-1611 |
| Popis: | Objective Malignant glioma is a devastating neuro-oncologic disease with almost invariably poor prognosis, yet many families facing malignant glioma have poor prognostic awareness (PA), or the awareness of the patient's incurable disease and shortened life-expectancy. Accurate PA is associated with favorable medical outcomes at the end-of-life for patients and psychosocial outcomes for informal caregivers (ICs) through bereavement. To date, however, no study has specifically examined PA among MG ICs and the information they receive that shapes their awareness. Methods Thirty-two ICs of patients with malignant glioma completed a semi-structured assessment of their awareness of the incurability and life expectancy of their loved one's illness, and to understand their sources of prognostic information and preferences for communication of prognostic information. Results Twenty two (69%) ICs had full PA - awareness of the incurability of malignant glioma and accurate estimates of their loved ones' life expectancy. Twenty-three (72%) felt that prognostic information was extremely or very important to possess, and 16 (50%) desired more prognostic information. The majority of ICs received prognostic information from physicians and the Internet. Qualitative analyses revealed that many ICs had difficulty navigating medical encounters in which they concurrently wanted to elicit prognostic information from physicians and protect patients from such information. Conclusions Accurate and timely PA is necessary for ICs to serve as critical members of healthcare teams. Interventions are needed to foster ICs' skills in navigating prognostic communication with patients and healthcare providers and thereby improve their ability to advocate for their loved one's wishes. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|
Plný text