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Narrative History of Palliative Care in Swaziland

Hope House: this inpatient unit is managed by Sarah Dlamini, a nurse and former director of the Coordinating Assembly of Non-Governmental Organizations (CANGO). The Hope House project involved a team of church and lay volunteers under the leadership of Fr. Larry McDonnell. Journalist James Hall writes (2000):

A team of church and lay volunteers under the leadership of a local Catholic priest and educator, Fr. Larry McDonnell, have erected 15 units, with 10 more awaiting construction in an innovative community that combines traditional Swazi hospitality with the latest applied theories in AIDS treatment and prevention. The complex is noteworthy for another reason. While only able to offer accommodation to a mere fraction of AIDS sufferers in Swaziland, it presents a prototype for imitation elsewhere in the kingdom.

Among the deeply-traditional Swazi people, the subject of AIDS is taboo. Sufferers do not acknowledge the cause of their illness, lest fearful family members refuse to attend their funerals. The health care and leadership vacuum has been filled by volunteers and social workers like Fr. McDonnell, who has been ministering to Swazis for three decades, mostly as an educator.

In March this year, the project called Hope House will receive its first tenants. Fifteen of 25 homes have been completed on the edge of Swaziland's commercial hub, Manzini, on land owned by the Catholic Archdiocese. Hope House is set on the rim of a beautiful green valley, and has the feel of a homestead.

Patients are not warehoused to die, but live what remains of their lives in dignity as part of a community. ‘Our residents will be men and women who are no longer allowed to stay in hospital,’ says Fr McDonnell. Swazi health facilities are unable to cope with the influx of AIDS patients, who are discharged when death is near. "Swazis live in strong extended family units, but sometimes there is no one at a traditional homestead to tend to an AIDS sufferer. A father may be dead, a mother sick, and children incapable of the responsibility.23

Swaziland Hospice at Home: Ingrid Watkins – chairperson of Friends of Swaziland Hospice, outlines the history of the hospice as follows:

Mrs. Stephanie Wyer MBE founded the Swaziland Hospice at Home. She went to live in Swaziland to join her husband who was working there. She arrived in Swaziland in March 1990. Her background was Macmillan nursing and in that spirit and experience the hospice work started almost immediately. She found a doctor who would work with her for prescribing medication etc. She acquired THE ‘yellow jeep’, which soon became well known. She started to visit cancer-patients at home and soon other patients and their families would ask for her help. Swazi-nurses became interested in her work.

A steering group was formed. The Hospice was registered as an NGO on 4 th of July 1990. A part-time nurse Judith Mamba (first member of staff) joined her and they worked together. People who started to work as volunteers, mainly for fund-raising also offered help. In August 1990, the British High Commissioner gave a caravan to the Hospice. (In post was Mr. Brian Watkins, whom is now Patron of FOSH (WALES). The Fire Station in Manzini offered a site on their land to put the caravan on. This caravan became the centre for courses in palliative care for nurses and other health professionals in Swaziland. During the same period of time Stephanie asked her friends in Wales to support the work she had started. At the end of 1990 we formed FOSH. ( Wales) UK, (Friends of Swaziland Hospice). Up to date this is a registered charity raising funds for SHAH (Swaziland Hospice at Home).

In 1991 Stephanie interviewed Mr. Stuart Craig in London. He was appointed to become the first Administrator of SHAH through Skill Share Africa. In 1992 two part-time nurses were appointed to work with Stephanie and Judith. One nurse was from South Africa the other from Zimbabwe both with palliative care experience. At the end of that year (1992), they left and two Swazi nurses joined the team; they were Ms. Sweetness Masonga and Mr. Sibusiso Dlamini. Both needed in service training. In 1993, a lady called Ms. Bunny Boyder with the help of Dr. Samuel Hind donated land to the Hospice. When this lady died she left more land and a house to Hospice. During 1994 the caravan was replaced by a one-storey building. Today this building facilitates the clinic where patients and families can come for treatment, help and advice.

In March 1994, Stephanie and her husband returned to Wales. She went back to Swaziland in August 1994 to assist the educator with a course she was running. She stayed for a month in which time a new director was appointed called Gcebile. Stephanie officially handed her work over to her in September 1994. Stephanie returned again in December 1994 to give the new Director support that was needed. She was then able to hand over the full management of SHAH to the Swazi people.

A director was appointed. Specialist Nurses delivered the hospice service in the community. Administration staff were employed. Through the years FOSH ( Wales) had enabled SHAH to get equipment for patient care (such as syringe drivers, special beds etc.), books, magazines for education, cars (including maintenance) for the nurses to visit patients.

In 1999, FOSH was successful in getting a community grant from the Lottery Board for Education for a period of three years. This project should have ended in September 2002, but will be finalised in January 2003. The project has enabled the hospice to grow into a centre for courses in palliative care in Africa. FOSH has been able to facilitate training in Britain for Swazi-nurses in further education at St. Christopher’s Hospice. This is ongoing at present. In the same year, FOSH was able to raise monies for the appointment of a doctor. This proved to be complicated but in April 2002 a doctor started to work for the Hospice. During the same year, a group of supporters in Swaziland formed FOSH ( Swaziland).

In 2001 the American Embassy donated an extended two-storey building to the Hospice. This was opened in 2002 and used for administration, conferences and lecturing. The original building is now a centre for patients and families to walk into for advice, food, clothes and medical help. A doctor and a nurse are present to see those who come. Patients can rest before they go home again (often they walk a fair distance; also their illness makes them very tired).

Mr. Sibusiso Dlamini, a trained nurse working with hospice, was prepared to pay a visit to Wales in 1997. FOSH ( Wales) sponsored him and gave him a second home during this time. He stayed on and went to St. Christopher's in London, gaining a degree from the Royal Marsden Hospital, London in palliative care in 2000. He returned to hospice in 2000. Small beginnings have developed into much needed and valued palliative care work’.24 

Sibusiso Dlamini has since moved from Swaziland Hospice at Home to take up a post with the National Emergency Response Committee on HIV/AIDS (NERCHA).

 Parish Nursing: ‘A New Robe’ parish nurse programme

The parish-nurse model for Africa was developed by Maternal Life International in collaboration with Dr. Cynthia Gustafson, director of the Carroll College Parish Nurse Centre in Helena, Montana. It is based upon a Christian philosophy of care:

The parish nurse role reclaims the historic roots of health and healing found in many religious traditions. Parish nurses live out the early work of monks, nuns, deacons and deaconesses, church nurses, traditional healers and the nursing profession itself.

The spiritual dimension is central to parish nursing practice. Personal spiritual formation is essential for the parish nurse. The practice holds that all persons are sacred and must be treated with respect and dignity. Compelled by these beliefs the parish nurse serves, advocating with compassion, mercy and justice. The parish nurse assists and supports individuals, families, and communities in becoming more active partners in the stewardship of personal and communal health resources.

The parish nurse understands health to be a dynamic process, which embodies the spiritual, psychological, physical, and social dimensions of the person. Spiritual health is central to well being and influences a person's entire being. A sense of well being can exist in the presence of disease, and healing can exist in absence of cure.25

The administrator of the Parish Nurse programme is Thandiwe Dlamini - a former director of the Swaziland Red Cross and the founder of many health care and social service organizations in the country. She was appointed Counsellor for Distinguished Service of His Majesty King Mswati III in 1998. The Parish Nurse programme came about as follows:

In the summer of 2000, Maternal Life International (MLI) was awarded a grant for $272,900 from the Bristol Myers-Squibb ‘Secure the Future’ Foundation. The purpose of the award was to allow MLI to design and implement a parish nurse program in twenty-five communities in Swaziland. The resulting program, entitled "A New Robe" is the first parish nurse program to be implemented in Africa. It provides a range of services, including hospice home-based care for AIDS patients, HIV testing and counseling, and HIV/AIDS community education. Similar to programs in the United States, the program reflects a holistic approach to health care, inclusive of the spiritual and social dimensions of AIDS care.

The common thread that binds "A New Robe" together is a profound respect for the life and dignity of the human person. Working with the Catholic Church of Swaziland and utilizing the start-up money provided by Bristol Myers-Squibb, MLI has hired and trained an in-country nursing director and 19 nurses. Ongoing support and education, as well as medicines and supplies are being provided through MLI’s fundraising efforts.26


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