SUMMARY:

The Hospice and Palliative Care Association of South Africa (HPCA) currently has 75 member hospices and

73 development sites throughout South Africa (SA), each an independent legal entity. The Mission of HPCA

is to provide and enhance the provision of sustainable, accessible, quality palliative care. PEPFAR funds

will strengthen the capacity of member hospices and other governmental and non-governmental

organizations to provide quality services to HIV-infected persons.

BACKGROUND:

HPCA strengthens existing services and develops new services through direct funding to member hospices

to promote accessibility and availability of palliative care in SA, including work with religious leaders and

member hospices that are faith-based organizations. HPCA personnel at national, provincial and district

levels continue to provide the infrastructure and coordination to develop and strengthen palliative care

programs within member hospices, the formal health care sector and NGOs. Improved collaboration

between HPCA and the National Department of Health (NDOH) is a key objective, aimed at optimum

utilization of scarce palliative care resources. FY 2006 funding has allowed the training of 7,108 trainees

from October 2006 to July 2007. The major focus of FY 2008 funding will be to provide direct palliative care

to patients and their families, to assess quality of palliative care, assist in the development of new services,

provide support to the care providers and provide training in palliative care. An HPCA member hospice will

also focus on increasing male patients' participation in the fight against HIV and AIDS. The Bana Pele

Project, in partnership with St Nicholas Hospice, will be using PEPFAR funding in FY 2008 to focus on the

expansion of palliative care in their area. HPCA will provide capacity building support to St Nicholas, who

will be administering the Bana Pele Project. Additional funding has been granted for Soweto Hospice in

Gauteng for FY 2008 which was managed by Hope Worldwide previously. HPCA intends to liaise with

Prison Services and the SA Defense Force (military populations) to share palliative care expertise and

support to these organizations.

ACTIVITIES AND EXPECTED RESULTS:

ACTIVITY 1: Provision of palliative care

HPCA is funding member hospices to provide care to patients with HIV and their families. Sites providing

palliative care include home-based care (HBC), day care centers, and in-patient units. Services include

elements of the preventive care package, management of opportunistic infections including provision of

cotrimoxazole, pain and symptom management, clinical prophylaxis, prevention with positives, treatment for

TB, psychosocial and spiritual care, and bereavement support for families and friends. Addressing

prevention with HIV-infected individuals is an important part of a comprehensive care strategy. Through

healthy living and reduction of risk behaviors, these prevention with positives interventions can substantially

improve quality of life and reduce rates of HIV transmission. The goal of these interventions is to prevent the

spread of HIV to sex partners and infants born to HIV-infected mothers and protect the health of infected

individuals. Family care includes training in all aspects of patient care, infection control, prevention, nutrition,

individual and family counseling and reduction of stigma. Increased participation by male patients will be

encouraged by an after-hours clinic at a member hospice. Bereavement care is integral to the provision of

palliative care and will be offered throughout the course of the illness as well as after the death of the

patient. A key aspect of both individual counseling and hospice support group services is reduction of

stigma and discrimination and reconciliation within families. Nutritional support will also be arranged (with

non-PEPFAR funding). ART referrals, as additional access sites are made available, will be a component,

including pediatric cases of advanced HIV. If the need for OVC services is identified but not provided by the

hospice, an established referral system is used to refer the patient to an outside service provider. Through

the reprogramming of funds from TBD Male Circumcision, HPCA will use funding to strengthen the

integration of Prevention for Positives programs at all member and affiliate hospices in South Africa. Since

all eligible patients are already reported as having received care under PEPFAR, no new targets are being

added. Rather, these activities are aimed at improving the quality of services provided to individuals who

are HIV-infected.

ACTIVITY 2: Development of new palliative care sites

This activity entails enhancing existing and establishing new palliative care services. HPCA Provincial

Palliative Care Development Coordinators (PPCDCs) lead development teams (PPCDT) in the regions,

comprising technical expertise from local hospices. The PPCDT assists in identifying new development

sites and providing financial and non-financial resources and mentorship to help build capacity in these

sites. The main criteria for development are community need and available resources. In addition to

development the PPCDCs also develop public-private partnerships between HPCA and government

departments to support these development sites. PEPFAR-funded Regional Centers of Palliative Learning

(CPLs) in 10 regions and mentor hospices will continue to develop new service delivery sites. The CPLs are

attended by health professionals in the public and private sectors including doctors, nurses, pharmacists,

and home-based care (HBC) workers. A mentor hospice is a fully accredited hospice, and receives funding

to provide technical expertise and meet mentorship needs in its region. Through these development

activities, the total number of HPCA palliative care sites will be expanded and palliative care will be more

accessible to currently under-resourced and under-served areas, increasing the availability of quality

palliative care to many more HIV and AIDS patients and families. Sustainability of existing and new sites is

addressed through ongoing fundraising workshops, through increased quality of services, through increased

human resources capacity building and through increased collaboration with the formal health care sector.

The integration of palliative care into existing non-hospice health services e.g. district hospitals, home-

based care organizations and clinics, has become an important aspect of the expansion of palliative care.

ACTIVITY 3: Accreditation and Quality Improvement

PEPFAR funding has facilitated the development of comprehensive HPCA and Cohsasa (Council for Health

Services Accreditation of SA) Standards of Palliative Care, which include standards of management and

governance, and clinical, psychosocial, spiritual care and quality improvement to ensure quality palliative

care in service delivery. A mentorship and accreditation program is based on these standards. FY 2008

funding will continue to support the accreditation and quality improvement of existing member hospices

based on compliance with these standards. Trained mentors and surveyors visit the hospices and an audit

Activity Narrative: of the hospice standards is carried out. To date, eleven hospices have received full accreditation, and many

are in preparation. The hospices that receive full accreditation are used as mentor hospices in Activity 2

above and to assist new member hospices to comply with the standards. The accreditation process is

aimed at raising the standard of palliative care services throughout the country.

ACTIVITY 4: Human Capacity Development

The objective of this training is to increase skills in delivery of quality palliative care services including

elements of the preventive care package. A CPL is an established hospice which has either achieved, or is

close to achieving, full accreditation and which has been selected because it has the best resources and

expertise to provide training and promote awareness of palliative care. A multi-disciplinary approach is used

in on-going training programs to ensure human capacity development. In partnership with higher education

institutions, professional associations and the National and provincial Departments of Health, Social

Development and Education, a wide range of accredited palliative care training programs are offered for

volunteers, community health workers, nurses and doctors. HPCA strives to have all training curricula

accredited.

PLHIV will receive at least one clinical and one other category of palliative care service. Palliative care to

family members of PLHIV or OVC will be provided in at least two or the five categories of palliative care

services.

HPCA supports the USG South Africa Five-Year Strategy to expand access to quality palliative care

services and improve quality of palliative care and HBC services, and thereby contributes to the 2-7-10 goal

of providing care to 10 million people affected by HIV.

SUMMARY:

The Hospice Palliative Care Association of South Africa (HPCA) currently has 75 member hospices

throughout South Africa (SA), each an independent legal entity. The Mission of HPCA is to provide and

enhance the provision of sustainable, accessible, quality palliative care. PEPFAR funds will strengthen the

capacity of member hospices and other governmental and non-governmental organizations to provide

quality services to HIV-infected persons.

BACKGROUND:

HPCA strengthens existing services and develops new services through direct funding to member hospices

to promote accessibility and availability of palliative care in SA, including work with religious leaders and

member hospices that are faith-based organizations. HPCA personnel at national, provincial and district

levels continue to provide the infrastructure and coordination to develop and strengthen palliative care

programs within member hospices, the formal health care sector and NGOs. Improved collaboration

between HPCA and National Department of Health (NDOH) is a key objective, aimed at optimum utilization

of scarce palliative care resources. FY 2006 funding has allowed the training of 7,108 individuals from

October 2006 to July 2007. The major focus of FY 2008 funding will be to provide direct palliative care to

patients and their families, to assess quality of palliative care, assist in the development of new services,

provide support to the care providers and provide training in palliative care. The services provided by HPCA

members for TB care are included in Palliative Care where the HIV patient is also diagnosed with TB.

ACTIVITY 1: Patient Care

Patients' adherence to uninterrupted treatment is encouraged and monitored. It is the practice of HPCA

member hospices and development sites to integrate TB care of the patient with HIV care, and the HPCA

training courses include DOTS training for home-based carers. HIV patients receiving HIV-related care are

routinely referred for TB screening. They are also referred to the local clinic or district hospitals for TB

medication and followed up through the home-based care network. Many hospices use the DOTS-based

national TB control strategy, in collaboration with the provincial Department of Health. HPCA also supports

efforts to prevent and manage drug-resistant TB among HIV-infected TB patients. TB infection controls are

implemented at hospice sites, such as maximized ventilation as an environmental control measure.

Exposure to TB is an occupational hazard in the course of caring for patients. HPCA has developed

guidelines for the Prevention of Transmission of Tuberculosis for staff in member hospices. The HPCA

guidelines recommend that all HIV-infected patients be tested for TB before admission to a hospice

program and that those with TB should be on TB treatment for 2 weeks before being considered for

admission to a hospice in-patient unit, for the protection of staff and other patients. HPCA and its members

will also focus on strengthening the relationships with public TB clinics to ensure appropriate referral and

follow-up mechanisms are in place for TB patients. In FY 2008 PEPFAR funding will be used to build on

existing TB services provided by member hospices by enhancing and expanding them. Joint TB/HIV

activities will be implemented at member sites. All patients receiving HIV care and treatment support will be

routinely referred for TB screening and followed up as appropriate.

ACTIVITY 2: TB Training

This activity will entail additional training of hospice staff and home-based care worker in TB screening, TB

testing, treatment and infection prevention. No additional staff will need to be employed for the TB program.

HPCA's existing training structures of Centers of Palliative Learning and the Regional Education Forums will

be utilized and the TB aspects will be incorporated in the palliative care curriculum. Training will be given in

accordance with national standards and will include TB screening, TB testing and treatment, prevention of

infection, and environmental controls. Because of multidrug-resistant (MDR) and Extensively Drug Resistant

(XDR) strains of TB, intensive training and Guidelines for HPCA members will be provided. Workshops will

be held regionally presenting optimum environmental controls. Funding will be used for this additional

training and possibly also to assist member hospices with ventilation equipment, irradiation lighting and

respirator masks as appropriate. Both of the above TB activities will be monitored and evaluated on an

ongoing basis. The target populations for this activity are people living with HIV and AIDS and the emphasis

area is human capacity development as both pre-service and in-service training will be provided to all HPCA

staff members and their affiliate organizations.

HPCA supports the USG South Africa Five-Year Strategy to expand access to quality palliative care

services and improve quality of palliative care and HBC services, and thereby contributes to the 2-7-10 goal

of providing care to 10 million people affected by HIV.

SUMMARY:

The Hospice Palliative Care Association of South Africa (HPCA), founded in 1988, currently has 75 member

hospices throughout South Africa (SA), each an independent legal entity. The HPCA Mission is to provide

and enhance the provision of sustainable, accessible, quality palliative care. The target population is

orphans and vulnerable children (OVC). The emphasis areas are human capacity development (training)

and local organizational capacity building. PEPFAR funding used to strengthen the capacity of HPCA

member hospices to provide pediatric palliative care to vulnerable children through identifying hospices that

provide care for OVC. The Bana Pele project, in partnership with St Nicholas Children's Hospice (St

Nicolas) in Bloemfontein, a sub-partner will improve the quality of life of OVC in the Motheo and Xhariep

Districts of the Free State, and increase identification of HIV positive children and improve access to

antiretroviral therapy for them.

BACKGROUND:

HPCA strengthens existing services and develops new services through direct funding to member hospices

to promote accessibility and availability of palliative care in SA. HPCA personnel at national, provincial and

district levels continue to provide the infrastructure and coordination to develop and strengthen palliative

care programs within member hospices, and government and non-government organizations. FY 2006

PEPFAR funding has allowed the Palliative Care training of 7,108 trainees from October 2006 to July 2007.

These trainees include Doctors, Social Workers, Trainers, Professional Nurses, Enrolled Nurses, Home-

based Caregivers and Managers. The major focus of PEPFAR funding in FY 2008 is to provide direct

palliative care to patients and their families, to assess quality of palliative care, assist in the development of

new services, provide support to the care providers, and provide training in palliative care. In FY 2008 an

OVC funding component has been added to the HPCA program, to ensure that children infected and

affected by HIV and any other life-limiting conditions will be identified, supported, receive pediatric palliative

care and antiretroviral therapy and, where necessary, referred for further support.

ACTIVITY 1: Bana Pele Project

In FY 2008 HPCA will be managing the Bana Pele Partnership grant. HPCA will provide mentorship to St

Nicholas to build capacity within that hospice. Capacity Building for the Bana Pele project will also include

the appointment of new staff in the Free State to coordinate the project and expand services to new regions

and into more rural areas. Capacity building in the communities will take place to identify and care for HIV

infected and affected children through education and training from the wellness centers. The wellness

centers are health drop-in facilities to promote and monitor health. Holistic services are provided, including

weighing of babies, nutritional advice, and immunization. Education in the homes and in community groups

will also be provided in order that communities can develop the capacity to provide care for these vulnerable

children and use community resources including local primary health care clinics. PEPFAR funding for the

Bana Pele Project, will be used to improve the quality of life of OVC in the Motheo and Xhariep Districts of

the Free State, increase identification of HIV positive children and improve access to antiretroviral therapy

through a strengthened referral system and the establishment of a cooperative network consisting of

relevant government departments, the antiretroviral program, faith-based organizations and other non-profit

organizations. OVC will receive direct support and family members will receive psychosocial, emotional and

spiritual care into the bereavement period.

Training for the Bana Pele Project: A Pediatric Palliative Care Training and Resource Center will be

established in collaboration with all project partners and the Department of Pediatrics of the University of the

Free State. The objective is to promote palliative care for children and provide a resource for the Free State

Province for expert advice and support. Materials on palliative care for children will be developed and used

for training. Community capacity will be improved through training and services from eight community

Wellness Centers in impoverished areas linked to the development of a Pediatric Palliative Care Training

and Resource Center, together with the Department of Pediatrics and Family Medicine. Prevention

education will be provided with the faith-based organizations to reach young people and training in palliative

care for children will be given to individuals. This activity will be supported by an array of monitoring and

evaluation activities to assist in monitoring the progress and measuring the results.

ACTIVITY 2: Capacity Building

HPCA will provide capacity building expertise to the member hospices selected to participate in the OVC

program. The selection of participating hospices is based on the following criteria: 1.Those hospices which

currently have an established children's program included in the palliative care services they offer were

considered.2.The numbers of OVC patients reported in their statistics.3.A representative spread of the

difference models of OVC service provision e.g. day care, home-based care and in patient units.4.The

community need in the region and availability of OVC services within each region. PEPFAR support will be

provided to these hospice sites to enable them to equip the hospice for this role. This funding will also be

used for the salary of an OVC coordinator at each OVC site, plus partial funded posts. In FY 2007 20

hospices were supported by this project and in FY 2008 this will increase to 29.

ACTIVITY 3: OVC Care Services

The pediatric care services will be provided as follows: identification of OVC, accessing grants, assistance

with foster care placements, assisting with access to education, HIV prevention information, education and

counseling, health care including pain and symptom management, Anti Retroviral Therapy (ARV) and TB

Medication supervision, day care, support to Child and Youth-Headed Households, bereavement support,

resilience and memory training, spiritual, emotional and psychosocial care, and support for elderly

caregivers, home-based care, in-patient care and early childhood development programs. HPCA will

provide the following OVC services: psychosocial, emotional and spiritual support will be provided to family

members with identification of very vulnerable households such as those headed by children and young

people, or the elderly. This activity will be supported by appropriate Monitoring, Evaluation and Reporting

(M&E) activities and tools to measure progress. Other support activities are improving access to ARVs,

monitoring and adherence of ARVs, nutritional interventions and facilitating access to social grants. Funds

will be used for direct funding for nurses, social workers, and social auxiliary workers and for transport and

admin costs of these human resources. Focus will be on the girl-child and the role of the female caregiver,

Activity Narrative: including the role of the grandmothers in support of OVC. This program will be for five specific pediatric

services and seven integrated pediatric services, with at least one per province. This program will also focus

on strengthening of existing comprehensive and or extensive pediatric programs through direct funding.

Linkages to other services such as TB treatment, ARV treatment and support will be integrated into the

OVC services.

ACTIVITY 4: Advocacy and Liaison

HPCA will liaise with corporate social investment programs and Government to strengthen and increase

funding for the care and protection of OVC. Where OVC support services are required which are outside the

scope of hospice expertise, e.g. child protection and nutrition, HPCA will identify suitable partners with the

technical expertise and resources to provide these services and to strengthen HPCA OVC programs. The

Bana Pele project will promote palliative care for children and raise public awareness. Links through existing

Child Care Forums will be strengthened through liaison with the Department of Social Development.

ACTIVITY 5: OVC and Pediatric Palliative Care Training

The Pediatric Palliative Care training will be strengthened to include the South Africa PEPFAR OVC

indicators, gender issues etc. Existing Pediatric Training curricula will be revised and expanded. Pediatric

palliative care training courses will include the following: Definitions of pediatric palliative care, Conditions

requiring pediatric palliative care, Models of pediatric palliative care, The Rights of the Child, Palliative care

within the context of childhood development, Pain management in children, Symptom management,

Nutrition, young person's understanding of death, Communication with children, Emotions of the child and

family members, Spiritual care and support of the child, young person and family, Bereavement support

including resilience and memory approaches, Social and legal issues relating to children and young people.

Ethical issues Core competencies and practical experience, and the mapping of family members (similar to

a family tree), to determine the support structure which each child has in their home environment.

Through these activities, HPCA supports the vision outlined in USG's South African Five Year Strategy to

expand access to quality OVC services thereby contributing to the 2-7-10 goal of providing care to 10

million people affected by HIV.

SUMMARY:

The Hospice and Palliative Care Association of South Africa (HPCA) currently has 75 member hospices

throughout South Africa (SA), each an independent legal entity. The Mission of HPCA is to provide and

enhance the provision of sustainable, accessible, quality palliative care. PEPFAR funds will strengthen the

capacity of member hospices and other governmental and non-governmental organizations to provide

quality services to HIV-infected persons.

BACKGROUND:

HPCA strengthens existing services and develops new services through direct funding to member hospices

to promote accessibility and availability of palliative care in SA, including work with religious leaders and

member hospices that are faith-based organizations. HPCA personnel at national, provincial and district

levels continue to provide the infrastructure and coordination to develop and strengthen palliative care

programs within member hospices, the formal healthcare sector, and NGOs. Improved collaboration

between HPCA and National Department of Health (NDOH) is a key objective, aimed at optimum utilization

of scarce palliative care resources. FY 2006 funding has allowed the training of 7,108 trainees from October

2006 to July 2007. The major focus of FY 2008 funding will be to train and support staff from identified

hospices to integrate counseling and testing (CT) into their services as a pilot program. The program will

focus on training and supporting hospice staff to provide CT services to patients and their families.

ACTIVITY 1: Pilot Site Project

PEPFAR funding in FY 2008 will enable HPCA to select four pilot sites in four provinces to integrate CT into

their patient services. The funds will be used to employ a professional nurse at each of these four sites, to

pay related overheads and to provide the necessary equipment and rapid test kits. Information brochures

will be produced for distribution at these four hospice sites and wherever else appropriate. After completing

the pilot project, HPCA will extend these CT services to all member hospices and sites. Within these four

hospice sites, CT will also be provided to families in homes as part of the home-based care program.

ACTIVITY 2: CT Training

Specific counseling and rapid testing training will be provided to these four, and other hospice professional

nurses, who will be certified after having received the required training. If necessary, lay counselors will also

receive specialized training to alleviate the burden on the clinical staff. Additional training will be provided on

couple counseling and testing. Home-based caregivers (HBCs) will be trained to identify potential HIV

patients in the community or family members and neighbors of patients. Those identified will be encouraged

and referred to the hospice for CT. The HBCs will also receive training on antiretroviral treatment support

and the importance of treatment adherence. The four professional nurses will also be trained in supervision

skills, as they will be supervising the HBCs involved in supporting this pilot project.

ACTIVITY 3: Client Services

The target population for CT will be patients, their families, and neighbors. The objective is to identify those

in most need of HIV treatment at the earliest opportunity. Confidentiality will be maintained through a

professional approach. The pilot hospices will have stocks of high quality CT rapid test kits and external

quality control measures around rapid testing will be implemented. Free tests will be offered, in a medical

setting at these sites, by trained and certified staff to all patients and their families or neighbors who present

with conditions that might suggest underlying HIV disease. Specially trained personnel will provide

appropriate pre- and post-test counseling in all cases. HIV-infected patients will be routinely referred for TB

testing, and to antiretroviral (ARV) clinics for CD4 counts and ARV treatment. Ongoing counseling and

referrals for medical care will be available to those who test HIV positive. HPCA personnel will facilitate ARV

treatment support for enhanced adherence to antiretroviral drugs. Trained home-based caregivers will

provide enhanced treatment support and patients will be referred to support groups. Those who test HIV

negative will be encouraged to maintain their negative status though educating them about prevention, and

how to protect themselves and their partners.

It has been shown that CT reduces the transmission of HIV from infected individuals to their partners.

Hospice site staff will be trained in the importance of targeting men, and on couple counseling and testing.

Disclosure remains voluntary, but HIV-infected patients will be encouraged to disclose their HIV status to

their partners and families when they feel safe to do so. Couple counseling will help to address this issue.

The four professional nurses at each site will supervise home-based caregivers who will be providing

information and support on CT in the communities.

ACTIVITY 4: Liaison with ARV Clinics and the Department of Health

The four pilot sites will improve liaison with local ARV clinics and the Department of Health to optimize CT in

that region. Patients will be referred to HIV support and advocacy groups.