COMPREHENSIVE COMMUNITY BASED PROGRAMS
FOR PEOPLE WITH CHRONIC DISEASES INCLUDING HIV/AIDS
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A brief history of St. Lucia's evolution

It started as in home care...

In 2000, while working in a local hospital as a charge nurse, several family members of Winfrida Mwashala became seriously ill. There was no facility available to care for them other than her own home. Hospitals are places where people go when they were acutely ill. Once stabilized, patients are usually discharged within a few days and expected to live or die in the community. There is such pressure on the hospitals that often patients would have to share a bed. Word spread quickly that Ms Mwashala was nursing family members in her own home, prompting community members to ask her to care for their ill family members. Thus, for a year or so she was able to offer these people basic care including pain medication, and IV's. She also offered instruction to the family members on how to administer basic care, and to address symptoms such as coughing, diarrhea, and bedsores caused by the most common opportunistic infections. And, equally important, she educated caregivers that they need not be so terrified of contamination that they must neglect their own sick.

At that time, nongovernmental organizations were offering community education about HIV/AIDS, but none offered care to the seriously ill. Ms Mwashala was determined to care for the sick; to convince people with HIV/AIDS that they were not cursed; to teach families not to abandon the ill; and to show, by example, that many people need not die if well cared for. Because the need was so great, because of the severe limitations of nursing patients in homes without water or sanitation and because she could care for numerous children and adults simultaneously, Ms Mwashala rented a house in 2002 using her own limited personal resources. St Lucia Hospice/Nursing Home was created to help fill this serious gap in community services.

ADDING RESOURCES

As the number of patients increased beyond the capacity of the home, Ms Mwashala, realized she needed a plan to mitigate this problem and to extend the reach of St Lucia's services and education beyond the walls of its' physical structure.

St Lucia attracted donors, both private and governmental. Donations have funded the development of the community health worker program, the purpose of which was to provide follow-up care to former patients, to encourage HIV testing, and to educate. St Lucia has been able, through its health worker program, to ensure compliance with medication protocols and to satisfy other basic needs. Hundreds of people have been served in this way.

In 2005 and 2006, St Lucia received two key grants - one from the International Council on Management of Population Programs and the Government of Tanzania through TACAIDS, and the other from the Government Municipal Council of Arusha. These grants were awarded in recognition of St Lucia's model of care, as measured by the decrease in hospitalizations, and for it efforts and successes in the fight against HIV/AIDS. They enabled St Lucia to extend its geographical coverage to the surrounding areas.

OPENING A HOME FOR ABANDONED CHILDREN

The staff of St Lucia were personal witnesses to the ravages of the AIDS virus, and routinely saw children left homeless because their deceased parents had been ostracized by their family and community. Ms Mwashala saw no alternative but to start a home for children who were HIV-positive or who suffered from other life threatening diseases. In 2006, a donor organization raised funds to purchase land and build a structure so that St Lucia's programs could be further expanded. In 2007, the grand opening of the new nursing home/orphanage was attended by many visitors and dignitaries of Tanzania, including the First Lady, Mama Salama Kikwete.

OTHER DONOR SUPPORTED PROGRAMS

St Lucia has been supported by numerous organizations and individual donors since its establishment. These grants were often targeted to a specific activity or group of beneficiaries, and many were available only for a limited period of time and, therefore, were not sufficient to sustain the programs that they were designated to support. Successful and highly beneficial programs that received temporary funding, and therefore could not be sustained, included an educational daycare program for 55 children living with their elderly grandmothers, and an outpatient clinic set up to provide HIV testing and counseling. Intermittently, St Lucia has received funds from individual donors to pay for children's health care and school expenses.

In 2008, the Global Fund awarded St Lucia substantial funding to assess the needs of the "most vulnerable" 7,070 children in the greater Arusha area. This project offered an enormous opportunity to change the lives of these destitute children. Having met and exceeded the first year's goal to assess the individual needs of each child, St Lucia received funding for an additional two years to implement the needed changes that had been identified. For example, orphaned children who had been sleeping on the ground under a piece of metal roofing had a brick house built for them; the home of a caretaker grandmother was made habitable; and many others received needed medical care. All the children were given a knapsack, pencils, paper, school uniforms and shoes - the lack of which had prevented them from attending school.

In 2009, St Lucia received a grant from Save the Children, another international organization, to advocate for childrens' rights in the Arusha urban area. St Lucia's role was to support children in developing their own Councils to work with Government leaders in addressing the ongoing needs of Tanzanian children.

To help make St Lucia more self sufficient, a garden of vegetables and fruit trees was funded by numerous donors and expanded through the design and plantings of volunteers from Development in Gardens (DIG). Other donors, including Ms Mwashala's family, funded a chicken coup, a cow barn, and a cooking house. St Lucia has received sufficient intermittent donations to support a small staff and to offset some of the expenses of caring for the approximately 20 children who live in the St Lucia home at any time.

TODAY'S PRIORITIES AND CHALLENGES

St Lucia's highest priority today is to secure diversified, unrestricted and stable funding sources that will ensure the sustainability of its children's home, nursing facility, and community-based services. St Lucia is committed to delivering intensive nursing and palliative care in the community, in partnership with other organizations and medical professionals, toward the goal of stabilizing patients and returning them to, or helping them to remain in, the community. The vision of St Lucia is to empower the community with the education and support it needs to care for its sick and needy children. The more children who are housed and cared for in the community, the fewer who will need to live in an institutionalized orphanage setting - the best, most effective outcome for all.






IMPORTANT LESSONS LEARNED
Many lessons have been learned over time from directing and operating these programs:
  • The willingness of many extended family members to care for orphans once they are medically stabilized
  • The importance of good follow-up in the community with former nursing home patients and reunited orphans
  • The effectiveness of persons living with HIV/AIDS as community educators
  • The transient nature of some donor funding and dependence on donors' special interests
  • The potential impact of offering brief stabilization services to a very large number of persons rather than offering long-term services to only a few

-- Winfrida Mwashala




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