The Reviewed and Revised
Compendium of Christian Projects
Addressing the Diseases
of Poverty: HIV/AIDS, Malaria, and TB
St. Francis Hospice:
Integrated Community
Home-based Palliative Care
Services
Project/
program name: St.
Francis Hospice: Integrated Community Home-based Palliative Care Services in
East Cape Townships for Terminally Ill Cancer and AIDS Patients
Country: South Africa
Church or
denomination: Christian
services serving all religious and cultural groups
Project
summary: St.
Francis Hospice Home Based Palliative Care is available 24 hours per day, seven
days per week, by a coordinated interdisciplinary team and extends to families
throughout the bereavement period, working with social intervention needed for
the fostering and care of orphans. The team, trained and skilled in palliative
care includes doctors, nurses, social workers, care workers, a community
developer, counselors and clergy and networks strongly with other relevant
disciplines. Care is provided
regardless of the recipient’s religion, culture or ability to pay for services
and aims to assist those for whom there are few resources.
Background/
History: St
Francis Hospice was established in 1986 as a Palliative Care Hospice reaching
out to terminally ill Cancer and HIV/AIDS patients and their families offering
nursing care, support and social intervention. The Hospice service works in
conjunction with other community Cancer and AIDS Networks and Health and
Welfare Services.
The service area is the Western areas of the Eastern
Cape of South Africa. Two rural
satellites have been established in Uitenhage and Humansdorp that each serve a
150 km radius to the farm and rural communities as far as Tsitsikamma. These areas have some of the poorest
economies in South Africa with high rural influx. It borders many townships and
informal settlements with high crime rates and low sanitation, water and
electricity supplies. The unemployment rate is over 50%.
South African statistics now show that 40% of
reported deaths in the 15 – 49 age group are due to AIDS. It is expected that 6
million South Africans might die from AIDS by 2010 according to the South
Africa Medical Research Council Report.
1 in 5 children will die if no prevention action is taken. Population growth will halt because of the
epidemic. In the project setting, the number of HIV+ people is the second
highest in South Africa behind KZN Province. South Africa is 24.5 % according
to the antenatal survey in conducted in November. Eastern Cape shows 20.2 %,
according to the same survey, and malnutrition in both children and adults is
very high. Latest statistics for 2001
are known HIV cases – 7 537 with deaths of 1 200. Cumulative total from 1989 –2001 is 41 180 HIV & Carriers and
4 739 recorded deaths in the western regions of the East Cape alone.
In 2000 The AIDS Care Workers pilot program was
created with assistance from the HIV/AIDS Directorate and the University of
Natal to make an economic yet professional model of care for townships.
In 2001, Strategic Planning moved the Home Based
Care Sisters offices, closer to poorer services areas to create user friendly
services, greater visibility and support structures for the Xhosa Care Workers
and AIDS Care Coordinator. We are now
creating day care services at these sites to meet patients’ holistic needs for
care and nourishment. From these sites, training of community volunteers in
hygiene, life skills, palliative care, HIV /AIDS prevention education and
empowerment projects can be undertaken.
Goals: Provide a high standard of
holistic palliative care to short life expectancy patients in their own homes
& to support their families throughout the terminal stages of illness and
the bereavement period
Objectives:
§
Caring
humanely for the terminally ill
§
Providing
for the physical, emotional and spiritual needs of patients and loved ones
§
Giving
the family and friends an opportunity to share in the supervised care
§
Making
the patient’s final days as comfortable and meaningful as possible
§
Providing
a high standard of social intervention required
§
Promoting
community understanding and compassion for such families
Who does the
work? St.
Francis Hospice has a staff consisting of 49 people, which includes:
§
Palliative
care doctors and nurses
§
Social
workers and community developer
§
Interdisciplinary
training team
§
Trained
Care Workers supervised by an AIDS Coordinator
§
Trained
community volunteers
§
Fundraising
and administrative team
§
Executive
and management team
They work with an extensive network of related
organizations to achieve professional care.
Main
activities:
1.
Home-based
care for approximately 350 patients, supported by a 6-bed inpatient unit
2.
Community
day care services
3.
Integrated
community home-based care - AIDS care worker services
4.
Pastoral
care
5.
Bereavement
counseling
6.
Psychosocial
intervention
7.
Limited
feeding scheme and food parcel project (when possible)
Expected
outcomes:
§
St
Francis will have greater visibility of services to those who need it most.
§
Community
Based Day Care projects will have an impact on the life of the community.
§
We
will improve prevention education through training of families, church and
community.
§
We
will increase and improve referral of AIDS patients from clinics and
hospitals.
Results: Because of the success of
the ICHBC outreach programs they have since been evaluated and successfully
replicated across South Africa.
The trained Xhosa care workers are now reaching out
into the poorest areas, addressing the multicultural community at grassroots
level and the real needs of indigent people who are often without the most
basic recommendations for daily nourishment or basic hygiene. The supervised
caregivers serve people who are often turned away by local hospitals- to die.
The trained Xhosa Care Worker teams now services five townships including, New
Brighton, Kwa Zakhele, Motherwell and Walmer and Kwanobuhle.
Lessons
learned: Because
of the discrimination of many HIV/AIDS patients and their families due to
ineffective AIDS education and social conditions, the loss of “ubuntu”
(community care and sharing) creates a basic poverty level that is often less
than the survival levels even for poor communities.
The surrounding environment is one of informal shack
settlements without adequate sanitation, water or electricity supply. This leads to the rapid onset of the AIDS
syndrome from the HIV infection to an early death. To care for AIDS patients and families means to provide more than
nursing, medical and social intervention, but also to find ways of providing
for a quality of life, employment and skills that will help them gain admission
to community life and /or provide for themselves.
A Day Care is key as a natural access to patients
for nursing and medical needs and assessment within their own environment. It
provides patients with interaction and much needed emotional support. Teaching
of skills through occupational therapy and a nourishing meal results in a day
to look forward to and a day off once a week for the caring relatives. Day Care is offered to both Cancer and AIDS
patients giving the opportunity for them to interact and to break down the
discrimination that exists. This has been very effective in existing day care
facilities.
To assist the Xhosa Care Workers, Sisters, Social
Workers and team to reach out to the community needs around AIDS patient care,
we need to establish Day Care services which would provide
§
Opportunities
for extended medical care
§
Social
interaction, counseling support and pastoral care
§
Small
business employment training
§
Entertainment
and building of self esteem
The following are successfully utilized as an
extension of work and community participation:
§
Partnering
Soup Kitchens and nourishment and food parcels
§
Skills
training for family members, relatives and friends
§
Community
talks
§
Workshops
for awareness campaigns for home-based care
§
Encompassing prevention elements and foster care for
orphans
§
Development
of garden projects, quilting, sewing, beading, etc.
The way forward:
§
Maintaining
and extending services to additional communities
§
Providing
community and township day care services at each service base
§
4-wheel
drive ambulatory vehicle for patient transport
§
Volunteer
training in communities
§
Caring
for HIV affected and infected children through their families.
§
Improving
contact with hospitals and clinics on referral procedures
Financial and
other resources: South African national and
local trusts and foundations, local corporate partners, and individual donors. These
partners include: The Anglo American Chairman’s Fund, Anglo Gold, Good-year,
Afrox Hospital Group, The “Diana” Princess of Wales Memorial Fund, Elton John
AIDS Foundation, British High Commission Pretoria and the United States Agency
for International Development (USAID).
Further
reading and other documents: N/A
Contact
information:
Sr. Lesley Lawson
(Sanc), Nursing Director and
Project Coordinator
Pam Lewis, Coordinator
Corporate Affairs
P.O. Box 7793
Newton Park
6055 Port Elizabeth
Eastern Cape
South Africa
Telephone: 027 41360 7070
Fax: 027 41 360 1279
E-mail: hospicefund@eastcape.net (Attention: Pam Lewis)