Jessica Rubinger: An Adult with Tuberous Sclerosis

Price (includes one year of access and CE):  US$8 Course Code: 7SENNF-PRV-09-ddn13s16 CE: 1.00 Hours. Post Test Score Required for Successful Completion: 80%

Course Overview:

Tuberous sclerosis complex (TSC) is an inherited neurocutaneous disorder that causes mental retardation, seizures, tumors and cysts, an increased risk of malignancy, calcium deposits in the brain, and skin manifestations. In this case scenario, a 32-year-old woman is diagnosed with breast cancer. Although the woman lives in a group home, her mother is her legal guardian. The nurse consultant for the group home accompanies the woman and her mother to the surgeon's office to provide support when options for treatment are discussed. The nurse advocates for the woman with the physician to make sure that the woman is offered the same treatment options as women without disabilities. She then listens as the woman's mother talks through her concerns about the various treatment options and makes a decision about which treatment she thinks is best for her daughter. The case scenario covers basic concepts related to developmentally appropriate pre-operative preparation, pre-operative diagnostic testing for a person with TSC, nursing assessment of nonverbal signs of distress and discomfort, and discharge instructions. The case scenario also discusses how nurses should prepare familiar caregivers who work in community residential facilities to serve as "sitters" with residents are hospitalized.

Course Objectives:

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

• describe how tuberous sclerosis complex can cause developmental disabilities.
• describe the effects that tuberous sclerosis complex can have on the skin, kidneys, lungs, and brains of persons with this inherited genetic disorder.
• discriminate among health care delivery that is influenced by uninformed assumptions, health care delivery that reflects negative attitudes toward people who have developmental disabilities, and health care delivery that is influenced by the concept that a person with developmental disabilities is a "person first."
• advocate in practice for the principle that persons with developmental disabilities should receive the same standard of health care delivery as persons who do not have developmental disabilities.
• support individual decision making for persons with developmental disabilities and/or their health care guardians when their decisions are based on what they believe to be the optimal choice from among several acceptable options for health care treatment.
• modify a preoperative nursing care plan to meet the needs of a person with severe cognitive and communication limitations.
• prepare unlicensed staff who care for persons with developmental disabilities to participate in the supportive care of these persons when they are hospitalized.

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.