Improving Quality of Life for HIV/AIDS Patients and Family
This is a personal From the Field story by Direct Relief Staff, Lindsey Pollaczek
I woke up this morning to thunder rattling the window panes. Unlike yesterday’s brief and powerful storm, the rain has not stopped falling for the past two hours. I keep thinking about Gloria’s family in their small tin shell of a home. I hope it’s not raining in Snake Park.
Conditions in many townships of Soweto have improved markedly in the last few years—in the vast, sprawling area of 3 million some are living rather comfortably. Homes have TVs, running water, a gas stove. But you don’t travel far before you meet abject urban poverty. Our visit yesterday in the Soweto township known locally as Snake Park illustrated how dire the situation is for many, particularly those who are sick and poor.
The dark sky has been threatening rain for an hour, but the deluge starts just as we enter the final home of the day. I watch Sr. Freda and Wilhelmina, Soweto Hospice’s nurse and community health worker, offer words of support to their patient Gloria when the downpour on the tin roof becomes deafening. The conversation fades as the sound of the rain overtakes the small space. Gloria’s daughters hurry to place small containers around the one-room home to catch the rain falling through the holes in the roof. The small puddles outside quickly turn to muddy rivers that begin to rush through the settlement. Twenty minutes pass and the rain stops as quickly as it has begun. Sr. Freda and Wilhelmina say their parting words to Gloria and we pick our way through the mud back to our 4×4 vehicle and wave goodbye. Freda and Wilhelmina are already thinking about when they’ll be able to come back—to bring a lifeline to Gloria and her family, to ensure she has adequate support to live comfortably with HIV in this terribly impoverished neighborhood of Soweto.
We are in Snake Park. The name conjures up a wild, inhospitable place. Nearly a decade ago, informal settlements started appearing in the grassy fields, apparently the original home to a number of resident snakes. It didn’t take long before the fields were overtaken with tin shacks, the homes of tens of thousands of people who couldn’t afford to live anywhere else. I’m told that the government’s Reconstruction and Development Program is undertaking infrastructure improvements here to provide better housing, water, and sanitation. Unfortunately, this is not at all apparent from Gloria’s neighborhood.
Gloria was diagnosed with HIV in 2006. Freda, a specialized nurse with six years of training, received a call from Gloria’s brother in 2007 and was asked to come by for a visit. When they first met, Gloria was very sick and barely able to care for herself. Since then, Freda has provided support all along the way through the many ups and downs in managing Gloria’s illness. This week Gloria is feeling relatively well, but she still has some chest pain and is coughing a fair amount. Last week Freda referred her to get a sputum test for tuberculosis and she is still awaiting her result. There is a good chance Gloria has TB, as co-infection among HIV patients is very high.
Gloria adheres closely to the antiretroviral regimen therapy she receives for free from the government. However, without a consistent supply of food, she struggles to remain healthy. The family has no source of income aside from the small government grant that her eldest daughter receives for her child. This is less than $28 a month to feed a family of five–not remotely enough. Her HIV drugs will not have the maximum benefit if she is not able to keep herself well nourished. Food scarcity also affects her family. Her eldest daughter has epilepsy and had a seizure last time Freda visited. When asked if she took her medicine, she admitted she had not because it made her ill to take it on an empty stomach, and there was no food with which she could take it.
During their near-weekly visits, Freda and Wilhelmina often bring food if the hospice has it available. It is not always possible, because the hospice itself is very strapped for resources as it attempts to care for over 1,250 patients at home and many more in their pediatric and adult in-patient units for those requiring around-the-clock care. Gloria is just one of Freda’s 250 patients to which she provides home- based palliative care. But in Soweto, a township of 3 million, there are undoubtedly many people that cannot be reached.
Soweto Hospice is a member of the Hospice Palliative Care Association of South Africa (HPCA), an umbrella organization that provides financial and technical support to develop the capacity of its more than 150 member hospices. The hospice and palliative care approach is to improve the quality of life of patients and their families facing a life-threatening illness through prevention and relief of suffering. In sub-Saharan Africa, over 90 percent of patients have HIV/AIDS. Fortunately, with the support of nurses and community health workers like Freda and Wilhelmina, many HIV patients in hospice care are becoming healthier and learning to manage their illness as a chronic condition that can be kept under control. Direct Relief has supported the efforts of HPCA and its member hospices by providing donations of medical supplies which are needed in home-based settings and in-patient units. Wound care dressings, through support of Johnson and Johnson, are currently being distributed throughout the HPCA network.
The amount of compassion and commitment shown by the hospice and palliative care staff is admirable. With very limited resources they are managing to uplift many to good health and provide relief from suffering and pain for those that are nearing the end of their lives. They are just touching the surface of caring for people living with HIV, but they are wholly dedicated to providing the best care they possibly can.