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INTERACTIVE EDUCATIONAL MATERIAL FOR PEDIATRIC BONE MARROW TRANSPLANTATION NURSES
Date du début: 1 oct. 2009,

Allogeneic hematopoetic stem cell transplantation(HSCT) is associated with significant morbidity/mortality.Nursing care is of utmost importance for the success of transplantation, to sustain patient health and for economical efficiency. Suboptimal nursing care in HSCT practice may cause undesired effects. This is particularly important for the pediatric field since there is very limited amount of data regarding the childhood specifics of bone marrow transplantation (BMT) practice for nurses. Topics regarding nursing issues in transplantation field are addressed in International standards such as JACIE (European Joint Accreditation Committee of the International Society for Cellular Therapy and European Bone Marrow Transplantation) which includes several standards and references for nurses in the Accreditation Manual but with minimal specific allude to pediatric BMT nursing. In adults, HSCT is almost always performed for malignant diseases. Pathological states in children treatable by transplant consist of a wider spectrum of diseases including malignant and non-malignant (hematological, metabolic, immunological, storage and neurodegenerative) diseases. Most of these conditions require specific nursing care before, during and after the transplantation period depending on the age, nutritional status, neuro developmental state, and general condition of the patient. The child with an inherited disease may suffer from multisystem problems in the pre-transplant stage that may require intense nursing care, parental teaching, psychological support during and after the transplant course. The spectrum of the malignant diseases is also different in children. Solid tumors such as neuroblastoma, rhabdomyosarcoma and others are not seen in adult practice and may require specific care and follow up. The long term complications of BMT are of particular importance again in pediatric practice when considering the longer life expectancy and the growth potential of children. All of the above states require specific nursing care; thus age-specific, condition-specific nursing policies and protocols. Unfortunately, guidelines concerning pediatric BMT practice are very limited and there is lack of a systematic approach of training for nurses. The present project aims to develop an electronic training material; to increase the knowledge and productivity of pediatric BMT nurses, to contribute to improvement of quality in transplantation and to provide the parents with necessary patient care practice information by the means of the portal to be developed. This will also contribute to efficient use of investments. In order to achieve that goal; policy and protocols, critical events and time points regarding pediatric nursing issues and support systems during the complicated transplant course (pre, post and in the immediate transplant period) will be used to prepare a questionnaire to be followed by development of the educational material. The e-training material will consist of several parts including general knowledge about BMT, standards in BMT practice, policies for all relevant nursing procedures to provide specific training in BMT nursing, and detailed information, guidance and training of patients, parents and caregivers.