The medical needs of an HIV-positive individual begin long before initiation of ART. It is critical to identify HIV-infected persons early, refer them to services, and retain them in care. Many of the care and support services offered to HIV-infected persons can improve health and quality of life, and reduce HIV-related complications and mortality. These services are part of a continuum of care offered from the time of initial HIV diagnosis, prior to and during ART, and continuing through end-of-life care.
Care and support services provided by PEPFAR comprise a broad range of activities, exclusive of ARV treatment, that are available to HIV-infected and affected individuals. These activities, including clinical, psychological, social, spiritual and preventive services, seek to increase retention in care, maximize functional ability, and minimize morbidity. From 2004 to 2008, the number of sites providing care and support in the 15 original focus countries increased from 3,126 to over 13,000. Over this same time period, care was provided to more than 10.1 million people.
PEPFAR has developed a package of interventions with proven efficacy in both reducing HIV-associated morbidity and mortality and reducing HIV transmission. Implementing this package provides multiple opportunities to integrate and coordinate with other health and development activities. This basic preventive care package may differ depending on the setting and the prevalence of other HIV-associated infections, but often includes many of the following interventions:
In addition, a number of other services may be offered under the "care and support" umbrella, such as:
In its next phase, PEPFAR will build upon its successes and emphasize following activities:
Pain management and palliative care
Despite the reduction in HIV-related death rates in PEPFAR countries, there is a need for pain and symptom management and palliative care to assist PLWHA. Even with expanded coverage and access to care, AIDS is still a leading cause of death in many of the countries where PEPFAR works. In many countries, access to strong pain medications (e.g. opioids) is extremely limited, especially outside of hospital settings. The definition of palliative care varies based upon the country context; the term means "end of life" care to some, while others define it to mean all care provided subsequent to a diagnosis of HIV infection. Patient-centered palliative care can be implemented either in the home, or in a community-based or facility setting, like a hospice, but there is a strong need to ensure continuity of quality care.
Many countries have restrictive policy environments that reduce access to pain management. Pain assessment and management should be included as part of the basic package of care services for PLWHAs. PEPFAR will continue to support policy changes that ensure that pain management is included both in guidelines and actual clinical services for PLWHAs. In addition, PEPFAR has supported civil society groups in work with their governments to strengthen commodity systems, train providers, and expand access to opioids for pain management.
PEPFAR's palliative care programs help to alleviate the burden of caregiving for families, particularly for children and adolescents who may otherwise be forced to drop out of school to care for ill parents. These programs also help families deal with the impact of HIV upon their loved ones. PEPFAR is working with countries to improve linkages between home or hospice-based palliative care and comprehensive clinical services, particularly given the challenges in accessing trained palliative care providers.
Home-based care and community health workers
A significant proportion of PEPFAR's basic care package, developed to support country-led strategies, involves interventions that can be provided outside of a clinical setting and be linked to larger development efforts. In rural areas and places where clinics are overcrowded, home-based care and community health workers provide essential services and strengthen the reach of a health system.
Home-based care is an important part of relieving the caregiving burden and providing extra support to families. However, home-based care is not a substitute for comprehensive clinical care, which is generally facility-based. There must be close oversight and clear linkages between clinical, home- and community-based care to ensure that HIV-infected individuals have access to a full range of clinical care services. Expansion of health center- level support and supervision must occur in concert with expansion of home-based care, in order to ensure adequate quality in both home and facility settings.
Prior to the need for end-of-life palliative care, the home is also an important staging area for messaging and care from community health workers. Through routine home visits, workers provide anticipatory guidance to PLWHA and their families and reinforce clinic-delivered messages. Community-based workers deliver components of the basic care package, like safe water kits and cotrimoxazole. It is essential for community health workers to be well-trained and linked to a clinic-based facility. PEPFAR is working to increase the numbers of home-based care and community health workers and support more strategic deployment of these workers by partner governments.
PEPFAR is also working to support countries in health systems strengthening efforts that encompass care and support. Such activities may include:
Given the high level of decentralization that occurs in care programming, PEPFAR is working with countries to ensure that services are available to all PLWHAs and affected populations without discrimination. Efforts to improve quality should also result in standard protections for patients, so that no PLWHA will be deterred from seeking and receiving care. In addition, PLWHA communities need to be engaged in efforts to plan and implement care and support services.
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