Care and Support

After learning that he is HIV-positive, Deodatus joined a post-test club where he was able to find support, discuss his feelings, access information on HIV prevention and treatment, and share experiences with other people living with HIV/AIDS in Tanzania. Deodatus then received training and obtained a job sharing his positive living experiences with other Tanzanians who are accessing HIV counseling and testing services. Photo by Tanzania PEPFAR Team

Care and Support

Key Points:

  • PEPFAR is working with countries to develop strategies to reduce HIV-related morbidity and mortality.
  • Care programs should increase early identification of PLWHA and expand referrals into comprehensive Health, Dignity and Prevention programs.
  • PEPFAR is working with countries to expand coverage of a quality basic package of care and support services for PLWHA and their families.
  • There needs to be clear linkages between care and support services in homes, communities, and clinical care facilities.
  • PEPFAR is supporting countries in efforts to increase appropriate pain management and palliative care.
  • Populations that are often marginalized and face discrimination must have equal access to quality care and support services.
  • PEPFAR will expand monitoring and evaluation of diverse care and support services by working to increase impact evaluations and link quality of life gains to care services.
  • 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.
  • 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

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:

  • Prophylaxis for opportunistic infections - most importantly, cotrimoxazole, which has been shown to significantly reduce mortality in HIV-infected individuals;
  • Screening, prophylaxis and treatment for tuberculosis;
  • Improved screening and treatment of opportunistic infections;
  • Increased access to safe drinking water and promotion of basic hygiene and sanitation;
  • Provision of insecticide-treated bednets;
  • Improved nutrition, including nutritional and micronutrient supplementation, which may reduce mortality independent of ART, and improve outcomes for patients on ART;
  • Health, Dignity and Prevention Programming for PLWHA and their families; and
  • Provision of HIV testing and counseling for family members and other contacts.

In addition, a number of other services may be offered under the "care and support" umbrella, such as:

  • Prevention, diagnosis, and treatment for opportunistic infections and other HIV-associated complications;
  • Palliative care, including management of pain and other symptoms;
  • Screening and treatment for cervical cancer - an opportunistic infection - currently provided through pilot programs in a number of countries; and
  • Economic strengthening and support activities, so that PLWHAs can continue to support themselves and their families.

In its next phase, PEPFAR will build upon its successes and emphasize following activities:

  • Optimizing early identification, referral, and retention of HIV-infected individuals, so they have access to the interventions described above;
  • Reducing HIV-related morbidity and mortality, utilizing the interventions described above;
  • Working at the country level to expand coverage and access to a quality basic care package for PLWHAs, particularly through integration of care with other health and development programming; and
  • Improving the quality of life for PLWHAs and their families, and measuring this improvement through periodic special surveys or other evaluation tools.

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:

  • Ensuring trained health care workers receive appropriate supervision, training and support in facility, community, and home-based care settings;
  • Improving linkages and referrals between facility, community, and home-based care programs to reinforce quality provision of care; and
  • Assuring reliable supplies of critical commodities.

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.

Moving Forward with Care and Support

Years 1-2 -

  • Support countries in defining and monitoring delivery of a basic package of care for PLWHA and their families, based upon country-level epidemiology and demographic data.
  • Help countries determine, map and develop plans to meet the need for care and support services, especially in rural and underserved areas.
  • Work with countries to establish pain management policies.
  • Support additional training and supportive supervision for community health workers to provide home- and community-based care.
  • Scale up existing high-impact care interventions and conduct robust program monitoring.
  • Identify promising and best practices.
  • Work with PLWHA communities to develop an active dialogue with policy and planning bodies, in order to allow for constructive feedback on effectiveness and continuous improvement of services.

Years 3-5 -

  • Engage in special surveys or other evaluation tools to determine impact of care activities on quality of life of PLWHA and their families.
  • Continue to support additional training for community health workers to provide home-based and community-based care.
  • Work to ensure that increases in access to care are accompanied by increases in quality of care.
  • Expand promising practices and successful care pilot programs, such as those addressing cervical cancer needs for HIV-positive women.

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