The National Down Syndrome Society (NDSS) publishes a set of Health Care Guidelines for Individuals with Down Syndrome, which reflect current standards and practices in the United States. NDSS emphasizes that adolescents with Down syndrome need the usual health care screening procedures, immunizations, and preventive health measures that are used for the teen-aged population at large. NDSS also recognizes that teens with Down syndrome have some unique risks as well as different levels of risks for particular diseases and disorders. The health guidelines provide a framework to detect disorders within these risk categories.
The NDSS Health Care
Guidelines address the following categories for adolescents with Down syndrome:
Because many components
of the physical examination can be bothersome or even traumatic for a teen with
Down syndrome, nurses can help prepare the adolescent by describing the procedure
in a manner consistent with the teens cognitive status. In some cases,
the presence of the nurse and/or mother during the exam can be quite comforting.
While some primary health
care providers will automatically schedule labs and consults for their adolescent
patients with Down syndrome, others do not manage this type of care. Nurses
working with the teen may arrange these appointments directly, contact the family
with periodic reminders, or simply set up a tickler system.
Teens with Down syndrome continue their educational and developmental progress. Theres no excuse for ignoring the developmental needs of adolescents with cognitive impairments, and regular assessments need to continue. Clinicians working with this population should support the following interventions:
Nurses working with this
population can play a key role in requesting, arranging, and interpreting the
developmental evaluations listed above.
NDSS cites the following recommendations for health care practitioners working with adolescents with Down syndrome:
Nurses working with the
adolescent can facilitate communication between the primary health care provider,
family members, medical specialists, and educational personnel. By providing
relevant information in a timely manner, the nurse can make sure that the NDSS
recommendations are addressed.
Its also helpful if
the nurse can attend the physical appointment with the teen. Many health care
providers offer a great deal of off-the-cuff information and casual recommendations
during the visit. If the nurse isnt present to take notes and interpret
the information to the teen following the visit, its important to prepare
a reliable family member to fill this role.