scholarly journals Preferences for professional versus informal care at end of life amongst African-American drug users with HIV/AIDS

AIDS Care ◽  
2014 ◽  
Vol 27 (2) ◽  
pp. 218-222 ◽  
Author(s):  
Mary M. Mitchell ◽  
Allysha C. Robinson ◽  
Trang Q. Nguyen ◽  
Thomas J. Smith ◽  
Amy R. Knowlton
Author(s):  
Dan Royles

In the decades since it was identified in 1981, HIV/AIDS has devastated African American communities. Members of those communities mobilized to fight the epidemic and its consequences from the beginning of the AIDS activist movement. They struggled not only to overcome the stigma and denial surrounding a “white gay disease” in Black America, but also to bring resources to struggling communities that were often dismissed as too “hard to reach.” To Make the Wounded Whole offers the first history of African American AIDS activism in all of its depth and breadth. Dan Royles introduces a diverse constellation of activists, including medical professionals, Black gay intellectuals, church pastors, Nation of Islam leaders, recovering drug users, and Black feminists who pursued a wide array of grassroots approaches to slow the epidemic's spread and address its impacts. Through interlinked stories from Philadelphia and Atlanta to South Africa and back again, Royles documents the diverse, creative, and global work of African American activists in the decades-long battle against HIV/AIDS.


2001 ◽  
Vol 36 (6-7) ◽  
pp. 735-753 ◽  
Author(s):  
Curtis J. VanderWaal ◽  
Fred L. Washington ◽  
René D. Drumm ◽  
Yvonne M. Terry ◽  
Duane C. McBride ◽  
...  

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 16-17
Author(s):  
Molly Perkins ◽  
Ann Vandenberg ◽  
Candace Kemp ◽  
Mary Ball ◽  
Joanna Jungerman ◽  
...  

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.


Sign in / Sign up

Export Citation Format

Share Document