ABSTRACT
Palliative care (PC), introduced early in the management of chronic illness, improves patient outcomes. Early integration of a palliative approach for persons with HIV has been documented to be effective in identifying and managing patient-level concerns over the past decade in African settings. The experience of implementing PC in multiple African and other resource-constrained settings (RCSs) emphasizes the need for essential palliative competencies that can be integrated with chronic disease management for patients and their families facing life-limiting illness. This article is an historical description of how basic palliative competencies were observed to be acceptable for health workers providing outpatient HIV care and treatment during eight years of U.S. implementation of "care and support," a term coined to represent PC for persons living with HIV in RCS. The need for team building and interprofessional education is highlighted. The model is currently being tested in one U.S. city and may represent a mechanism for expanding the palliative approach into management of chronic disease. Such competencies may play a role in the development of the patient-centered medical home, a critical component of U.S. health care reform.
Subject(s)
Education, Professional/economics , Education, Professional/methods , HIV Infections/economics , HIV Infections/therapy , Palliative Care/economics , Palliative Care/methods , Africa , Chronic Disease/economics , Chronic Disease/therapy , HIV Infections/diagnosis , Health Personnel/education , Health Personnel/psychology , Health Resources , Home Care Services/economics , Humans , Palliative Care/psychology , Patient-Centered Care/economics , Patient-Centered Care/methods , Prognosis , Treatment Outcome , United StatesABSTRACT
BACKGROUND: In response to increased global public health funding initiatives to HIV/AIDS care in Africa, this study aimed to describe practice models, strategies and challenges to delivering end-of-life care in sub-Saharan Africa. METHODS: A survey end-of-life care programs was conducted, addressing the domains of service aims and configuration, barriers to pain control, governmental endorsement and strategies, funding, monitoring and evaluation, and research. Both closed and qualitative responses were sought. RESULTS: Despite great structural challenges, data from 48 programs in 14 countries with a mean annual funding of US 374,884 dollars demonstrated integrated care delivery across diverse settings. Care was commonly integrated with all advanced disease care (67%) and disease stages (65% offering care from diagnosis). The majority (98%) provided home-based care for a mean of 301 patients. Ninety-four percent reported challenges in pain control (including availability, lack of trained providers, stigma and legal restrictions), and 77% addressed the effects of poverty on disease progression and management. Although 85% of programs reported Government endorsement, end-of-life and palliative care National strategies were largely absent. CONCLUSIONS: The interdependent tasks of expanding pain control, balancing quality and coverage of care, providing technical assistance in monitoring and evaluation, collaborating between donor agencies and governments, and educating policy makers and program directors of end-of-life care are all necessary if resources are to reach their goals.
Subject(s)
Continuity of Patient Care , HIV Infections/therapy , Models, Organizational , Palliative Care/standards , Quality of Health Care , Terminal Care/organization & administration , Acquired Immunodeficiency Syndrome/epidemiology , Acquired Immunodeficiency Syndrome/pathology , Acquired Immunodeficiency Syndrome/therapy , Africa South of the Sahara , Day Care, Medical/organization & administration , Disease Progression , Financing, Organized , Government Programs , HIV Infections/epidemiology , HIV Infections/pathology , Health Care Surveys , Home Care Services/organization & administration , Hospices/organization & administration , Hospitalization , Humans , Terminal Care/economics , Terminal Care/psychology , Terminal Care/standardsABSTRACT
In May 2000, the HIV/AIDS Bureau of the Health Resources and Services Administration convened HIV experts from throughout the country to identify new and emerging areas of research needed to guide policy and programmatic decisions on HIV service delivery to vulnerable populations. This article describes the process used to develop an evaluation/research agenda, discusses key findings and recommendations of the conference, and proposes a set of principles to guide the design and conduct of future investigations. Conference participants identified nine major evaluation/research themes that span the continuum of HIV behavioral prevention services and treatment. They recommended focusing future research on questions relevant to populations experiencing rapid rates of increase in HIV infection (for example, women, people of color, and adolescents and young adults) and considering explanatory factors at multiple levels of analysis (individual, clinician, organization, service delivery system, and environment).
