Davey Lee: A Four Year Old with Tay-Sachs Disease

Price (includes one year of access and CE):  US$8 Course Code: 7SENNF-PRV-09-ddn13s21 CE: 1.00 Hours. Post Test Score Required for Successful Completion: 80%

Course Overview:

Tay-Sachs disease (TSD) is a genetic disorder in children that causes progressive destruction of the central nervous system and death in early childhood. There is no treatment or cure for TSD and, with the deterioration of developmental skills, the progression of losses can be devastating to the family. This case scenario begins as the family, which has cared for their child with great care and competence, is experiencing fatigue caused by the child's increasing care needs. The nurse helps the family to reconcile their preference to provide the child's care themselves with their need for rest and support. In turn, the family helps the nurse to understand how their child experiences the world and communicates. The module also discusses end-of-life care, nursing support as the family anticipates and plans for the death of their child, and introduction of home hospice services.

Course Objectives:

After completion of this learning activity, the learner will be able to:

• describe the partnership triad among the nurse, person, and caregiver.
• describe how environmental and personal contexts affect the situation presented in this scenario.
• apply elements of human caring to the concept that a child with Tay-Sachs disease is a person who has value and deserves respect, has the right to self-determination and maximum independence, has capacity for growth and development, and has ability for meaningful communication.
• discuss the role of the hospice nurse in the care of a child with a terminal disease.
• identify responses that appropriately encourage and support the expression of feelings on the part of parents whose child is experiencing a progressively degenerating disease.

This courseware was made possible in part by grant number R43 NR04738-03 from the National Institute of Nursing Research (NINR). Its contents are solely the responsibility of the authors.

Copyright© 2007 by HealthSoft, Inc. All Rights Reserved.

HealthSoft, Inc. is an approved provider of continuing nursing education by the New York State Nurses Association, an accredited approver by the American Nurses Credentialing Center's Commission on Accreditation.

It has been assigned code 7SENNF-PRV-09.

This course is updated annually. Expiration date: 5/1/11

The faculty and planners of this course have no vested interests to disclose.

This course has received no commercial support.