Tommy Banks: An Eight Year Old with Fragile X Syndrome

Price (includes one year of access and CE):  US$8 Course Code: 7SENNF-PRV-09-ddn13s11 CE: 1.00 Hours. Post Test Score Required for Successful Completion: 80%

Course Overview:

Fragile X syndrome is the most common inherited cause of mental retardation. More common in males, it causes characteristic physical features, communication dysfunction, and behavioral problems, such as ADD and autistic-like behaviors. In this case scenario, the elementary school nurse provides care for a boy with fragile X, who is anxious and distressed after a playground injury. Unable to reach the boy's parents, the nurse asks the boy's older sister to help reassure him. The nurse notes that the sister assumes the role of interpreter and comforter for her brother, and recognizes that this is a large responsibility for a child. By encouraging the girl to talk about her feelings, the nurse assesses a need for sibling support. The need for sibling support in this family becomes further apparent when the nurse also learns that the injured boy's younger brother has been acting-out and ridiculing him at school. Options for sibling support are presented. This module also includes the personal account of an adult who has three siblings with fragile X syndrome as she shares her memories of feeling lonely, anxious, angry, and guilty as a result of having siblings with severe developmental disabilities.

Course Objectives:

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

• describe some of the physical and behavioral characteristics of a child affected by fragile X.
• determine the highest priority for nursing intervention in this scenario.
• describe the partnership triad among the nurse, the child with fragile X, and his caregivers: his sibling and their mother.
• apply elements of human caring to the concept that a child with fragile X 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.
• apply elements of human caring and mutual respect to not only the child with fragile X, but also to sibling and parent caregivers.
• identify responses that appropriately encourage and support the expression of feelings on the part of the caregiver sibling.
• identify nursing interventions that can be implemented by the school nurse in support of a sibling who acts as caregiver of a special needs child.

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.