This profile was prepared when Janice Webster was elected to the Ashoka Fellowship in 2008.
The New Idea
Having observed that patients in altered states of consciousness often suffer from misdiagnosis, neglect, and abuse in South Africa’s public hospitals, Jan has devised a new model of hospital care for comatose patients that heed their rights and needs as well as those of their family members. Jan’s model also markedly improves the working conditions and job satisfaction of severely overstretched nursing staff and other hospital personnel. In 2005, Jan founded a citizen organization, ComaCARE Trust, with the aim of implementing her model., today ComaCARE is based in a neurosurgery ward and neuro-ICU in the Groote Schuur Hospital—a major public hospital in Cape Town that serves as the teaching hospital for the University of Cape Town’s Faculty of Health Sciences. Jan and her ComaCARE team engage in four types of activity—Care, Advocacy, Research and Education/training (CARE). Jan has introduced a new protocol for interacting with coma patients that trains neurosurgery staff, nurses, family members, and volunteers to identify small signs of brain activity and to cultivate those signs into signals for communication. Jan and her colleagues also attend to the generally overlooked needs of family members of coma patients—a task in which she draws on the services of carefully trained local volunteers who speak indigenous languages and can thus pick up and relate to the nuances of the ethnic background of patients and their families. Such use of volunteers in the care of critically ill patients in acute neuro settings and their families is unprecedented in Southern Africa. As one component of a broader advocacy initiative, Jan has also set up a multi-disciplinary out-patients’ clinic to provide patients and their families with medical information pertaining to coma in their local languages and to expedite their access to social service grants. This “one stop shop” clinic is also the first of its kind in Southern Africa. ComaCARE offers an expanding array of training and education initiatives. In addition to training volunteers, Jan has organized three training modules for nurses working in neurosurgery wards and neuro-ICUs for which she is seeking formal accreditation from the Health Education and Training Authority (SETA) and for registered nurses through the South African Nursing Council ((SANC) She is also providing informal training for medical staff to help them become more aware of coma patients’ ability to communicate, and lectures on lessons learned in the ComaCARE initiative in public health courses for second- and fourth-year medical students at the University of Cape Town. Jan and her colleagues are also actively engaged in ward-based research to assess the effectiveness of their approaches in caring for comatose patients—both to provide assurance that the rigorous ethical standards that govern patient care are being followed, and to construct a firm basis for gaining the approval of the National Departments of Health, Social Services, and Justice for new protocols for coma and post-coma care. This will facilitate the spread of ComaCARE’s approach across Southern Africa and across the African continent more broadly. With the latter aim in view, ComaCare has developed a website (w.w.w.comacare.com), has been represented at international pediatric neurosurgery conferences and aims to host a Pan-African Conference on coma care in 2011.