Home-Based Care for Patients with Lysosomal Storage Disease: Experiences in Argentina

ABSTRACT Enzyme replacement therapy (ERT) is a long term treatment for patients who suffer from lysosomal storage disease. A transversal descriptive study was conducted to evaluate advantages and disadvantages of a home-based care program for patients with Gaucher, Fabry and Mucopolysaccharidosis II (MPS II) diseases. A survey among patients and nurses involved in healthcare delivery at home was utilized for this study. The adherence rate was 92.9% over the study period. Eighty six point nine percent chose to carry out the treatment at home and 88.5% felt that their quality of life had improved. Additional advantages reported were: comfort (77%), treatment adjustment to daily activities (69%) and flexibility (58%). Disadvantages expressed were: lack of confidence with the health care provider at home (1.6%) and a shortage of disposable materials available (1.6%). The main benefits of home-based treatment were the high treatment adherence and the improvement in quality of life.

A perspective of end-of-life care education in undergraduate medical and nursing students in Buenos Aires, Argentina.

BACKGROUND: The goals of this study were to evaluate: (1) the experiences and attitudes after exposure to dying patients in undergraduate medicine and nursing students with lack of training in end-of-life care issues; (2) whether or not exposure to terminally ill patients (TIPs) influences attitudes in students who had no training in end-of-life care; (3) students wishes regarding their future care of TIPs; and (4) if medicine and nursing students are indeed interested in receiving training in end-of-life care. MATERIALS AND METHODS: A survey was administered to students in the first and last year in schools of medicine and nursing, comprising seven universities in the city of Buenos Aires, Argentina, and surrounding areas. Data were collected during the 2005 to 2010 time period. Data from 730 students were analyzed. DISCUSSION AND CONCLUSION: We found that nursing and medical undergraduate students at nursing and medicine schools in the city of Buenos Aires and surrounding areas: (a) come in direct contact with TIPs and perceive their suffering; and (b) have a highly positive attitude toward these patients, even though some of them referred to that relationship as arduous and in some cases they tended to avoid emotional involvement because they did not feel well trained. We also found that (c) this wish for avoidance was increased in final-year medical and nursing students who had been exposed to a higher number of TIPs; and (d) students unanimously manifested the opinion that the teaching about caring of TIPs should be included in the curricula and they would be well disposed to receive it. For all these reasons, we consider that the teaching of caregiving to TIPs in the academic degree programs of nursing and medicine should not be presented as a marginal issue.

Nursing education: the experience, attitudes, and impact of caring for dying patients by undergraduate Argentinian nursing students.

BACKGROUND: There is extensive research documenting serious deficiencies in undergraduate nursing education related to end-of-life care. Many nurses and nursing students have difficulties in dealing with death and report feeling anxious and unprepared to be with patients who are dying. In Argentina, education on palliative care, death, and dying has not been made part of the undergraduate nursing curriculum. METHODS: We performed a multicenter survey on undergraduate nursing education regarding the care of dying patients at eight schools of nursing in Buenos Aires, Argentina. We enrolled 680 students from first to fifth year. RESULTS: Students acknowledged interacting directly with dying patients. Attitudes toward dying patients were highly positive. Students of the fifth year expressed a less satisfying relationship with their patients than those from the first year; considered it as a less gratifying occupation, and also showed a greater preference for avoiding emotional involvement with those patients. DISCUSSION: Many of them described in short and very expressive phrases the emotional impact of their encounters with patients facing a life-threatening illness. Students perceived that this issue received more attention in humanistic rather than clinical subjects. Ninety-eight percent of students spontaneously demanded more training in end-of-life care. The interest and desire of undergraduate students to enhance their knowledge and experience in palliative care, demands more specific teaching contents. CONCLUSION: This suggests that in Argentina, improvements in undergraduate nursing training are urgently needed and would be well received by the students. It could be very useful to consider this topic as part of accreditation standards for nursing programs.