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Evaluating Complementary & Alternative Therapies
For Individuals with Rubinstein-Taybi Syndrome
Joan Earle Hahn, DNSc, RN, CS, CDDN
Kathleen A. Zink, MSN, RN, CS
University Affiliated Cincinnati Center for Developmental Disorders
Nursing Department
Cincinnati, Ohio
Complementary and alternative therapies include a broad range of philosophies, approaches and therapies for healing, some of which have been around for centuries. Generally, these therapies are
not taught widely in medical schools or generally used in hospitals (National Institute of Health, 1998). The use of complementary and/or alternative medical therapies is becoming more popular as a treatment choice for
all individuals. Parents/caregivers who have children with developmental disabilities are now seeking information about these therapies as possible treatment options for their children. At the time of this
presentation, no published research could be found about complementary and alternative therapies for individuals with Rubinstein-Taybi syndrome (RTS). A small number of anecdotal reports from parents was found on internet
web sites on RTS.
This presentation reviewed the related research findings on the use of selected complementary therapies for individuals with developmental disabilities, such as the use of massage or touch with children
with autism and the use of nutritional therapies for children with developmental delays or Down syndrome. Strategies to critique research findings were outlined and included evaluation of credibility, use of experimental
and control groups, and analysis of risks versus benefits. The presenters also described a framework for responsible decision-making in choosing a complementary or alternative therapy for an individual with RTS.
Severa1 examples of complementary/alternative treatment options were presented for common health concerns of individuals with RTS. Recommendations emphasized the importance of assuring a collaborative, cooperative effort
among parents/caregivers, health care professionals and the individuals with RTS. Future directions included the need for additional scientifically based research; the importance of a collaborative team effort to evaluate
research and support parents who are looking for treatments; and the guiding principle of a “do no harm” philosophy while fostering well being and assisting the individual to maximize his or her potential.
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