measurable effects on reproductive planning, the size of each study was too small to produce statistically significant results. In one study (Grossman, Holtzman, Charney, et al., 1985), followup interviews revealed that parents retained educational material presented at the first counseling session.

Qualifications for Sickle Cell Educators

Sickle cell trait education can be provided by individuals who have received proper specialized training.

In assessing whether a candidate has the qualifications to be a sickle cell educator, three factors should be considered:

1. Education and/or work experience.

2. Experience in education related to health and human services.

Individuals counseled by trained lay Correct answers in post-counseling test

3. Certified approval documenting satisfactory completion of a course at a sickle cell educator training center.

Educational qualifications should include a minimum of a high school diploma, though it is preferable if the individual is a college graduate with course experience in at least one of the following: biology or genetics. An alternative to a college degree could be significant work experience in a health care facility in associated fields.

Each educator should receive a certificate of approval, which would be awarded after successful completion of a sickle cell training course. The certification process should include an examination that assesses the individual's knowledge of the required material and his or her ability to teach the material in an objective and nondirective fashion.

Such training courses should be developed, or endorsed, and supported by each State's newborn screening and followup program. All sickle cell

Table 17. Instructional techniques for counseling parents of children with

educators should provide documentation to the screening program each year that they have updated their skills and knowledge. This annual update can be provided by approved training programs or through selective lectures by qualified individuals approved by the State's screening program.

In addition to educational requirements, sickle cell educators should possess excellent communication and interpersonal skills, an engaging personality, a commitment to excellence, and a belief that their role is important. They also should possess sufficient self-discipline to enable them to conduct on a day-to-day basis sessions that conform to the established protocol and/or curriculum.

The educational sessions for parents are invariably one-time, relatively brief (45 to 60 minutes), one-on-one encounters between two or more strangers. Thus, the educator should have the necessary interpersonal skills that enhance rapport. Inaccurate information might lead to imprudent decisions. Thus, the job requires individuals whose personal integrity motivates them to conduct each session to the best of their ability.

Because individuals with sickle cell trait have the potential to have children with sickle cell disease, they need accurate information upon which to base reproductive decisions. Decisions regarding marriage and family planning are among the most important personal decisions. It is imperative that the educator, like the genetic counselor, avoid giving direction regarding decisions on marriage and family planning. Educators

sickle cell disease

Counseling methods

Three methods were compared:

Results

All three methods increased scores on knowledge

video tape and counselor-answered of genetics from about 50 to 80%; all three methods

questions, structured session with counselor, open-ended discussion with counselor; assessments made at 2 and 10 months after counseling

Television, radio, and newspapers were used as part of a mass-media educational program on cancer, substance abuse, and sickle cell anemia

increased scores on knowledge of thalassemia from about 40 to 80%; there were no significant differences in either measure by counseling method

must avoid influencing such decisions either directly or indirectly through verbal or nonverbal means (for example, facial expressions, intonations, or phrasing).

Counselor Qualifications

Decision-making counseling should only be conducted by individuals with professional backgrounds and training in guidance and counseling. These include genetic associates, clinical geneticists, nurses, medical social workers, and physicians.

Adequate quality assurance is an essential aspect of genetic counseling.

Because education and decision-making counseling are conducted in private, there is no guarantee that all educators and counselors, regardless of their training, will consistently follow the prescribed curriculum. Some form of quality control must be implemented. This may take the form of (1) audio-taping of sessions with periodic critiques of randomly selected tapes, (2) post-session interviews with counseled people, and/or (3) periodic scheduling of sessions with a trained, knowledgeable, simulated counselee.

Ongoing outcome evaluations of the program must be conducted. A quantifiable objective should be established for each content item. For

Table 18. Counseling of individuals with sickle cell trait for family planning and decision making

example, at the end of each session a specified percentage of the people undergoing education or counseling should be able to provide a satisfactory answer to the question “What is the chance for the first child of a trait x trait couple to have sickle cell anemia?" Another goal might be that a specified percentage of counselees will provide correct answers to a certain percentage of the post-test questions. Future research is needed to determine what these goals should be.

Monitoring the counseling (process evaluation) will help ensure that counselors consistently adhere to the counseling curriculum. There is also a need to ensure that the counseling curriculum is adequate. Outcomes assessments can provide a starting point for developing strategies to improve the program. It must be recognized that shortfalls in the achievement of objectives can be related to several factors, including the counselor's performance, the counseling curriculum, and characteristics of the person counseled.

Conclusion

The Panel's recommendations are based on both experience reported in the literature and personal experience. There is a need for further research to support these recommendations and to investigate possible alternative methods for the provision of sickle cell education and genetic counseling.