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An Evaluation of a Community-Based Sexuality Education Program for Individuals with Developmental Disabilities
Methodology
Participant Recruitment and Characteristics
Individuals applying to the program are required to participate in a 3-hour, pre-program assessment which consists of a one-on-one interview with a program educator, knowledge-base pre-test, behavioral observation of consumer’s sexual expression completed by the support person, and the submission of specific records.
At the time of this research study, 207 consumers have completed the program. The age of the consumers ranged from 12 to 68 years of age (M = 35.0). The IQ range of the participants ranged from 20 to 97 with a mean IQ of 54.4. In regard to gender, slightly over half of the population of consumer participants were male. The greatest majority of the consumers were White/Caucasian with the remaining divided between American Indian, Black/African American, Hispanic, Asian, and other. The majority of the consumers reside in a supported living arrangement. The rest live in the following environments: independent living, companion living, family home, foster home, group home, and other living arrangements.
Approximately 87% of the consumers attended the program in the weekly format, while the rest attended the program in the bi-weekly format. In regard to support persons, 192 have attended the orientation sessions.
Measurement
All of the measures were created by the Responsible Choices Program administrator and one of the program evaluators.
Sexual Abuse and Perpetration
The Responsible Choices Program educators document the number of sexual abuse and sexual perpetration incidents that are self-disclosed by the consumers. A report is made to Adult Protective Services if the sexual abuse or sexual perpetration is ongoing. The number of reports is also tracked.
Demographic Data
As part of the screening, demographic information is collected about the consumer. Information collected includes: (a) age, (b) IQ, (c) gender, (d) race, (e) current living situation, and (f) past residential situation.
Support Person Pre-Test / Post-Test
A 20-item, true/false, questionnaire is administered to support persons (i.e., staff or family caregiver) to evaluate their knowledge of sexuality and disabilities. The paper/pencil questionnaire is administered at the beginning of the support person training and again as soon as the training is completed.
The items in the survey cover common misperceptions about individuals with developmental disabilities. Sample items include: (a) "Individuals with disabilities generally have higher sex drives than non-disabled couples," (b) "People with developmental disabilities do not desire as much physical touch as does a non-disabled person," and (c) "Individuals with developmental disabilities are able to love and care at the same emotional depth as non-disabled people." Incorrect items are coded as "0" and correct items are coded as "1". The scores are summed to get the amount answered correctly at pre- and post-test.
Consumer Knowledge of Sexuality Pre-Test and Post-Test Surveys
A pre-test/post-test survey was developed (a) as part of the assessment of participants, (b) to assess the knowledge of consumers at the pre-test so the program trainer can customize the training sessions to the needs of the consumers, (c) as a way to make individual placements into the appropriate classroom groups (based on sexual knowledge, sexual experience, and developmental level) and (d) to determine if significant increases in knowledge occur from pre-test to post-test.
The surveys are administered by trained Responsible Choices Program educators to consumers prior to beginning the program and approximately 6-weeks after the program has been completed. The educator has a copy of the survey in front of him/her for guidance. The educator may ask the questions in various ways to ensure the consumer comprehends the intent of each question. The surveys are administered in a variety of formats based on the limitations and strengths of the consumers. For example, some surveys may be administered orally, through sign language, through visual methods, or some combination of these methods.
The survey has a total of 49 questions, however many questions have more than one response choice to be answered. For example, the first question asks the consumer to identify the location of private parts on the male body. Two potential response choices are acceptable (i.e., penis and butt). For each response choice, the consumers are given a score of "1" for a correct response. A score of "0" is given if the consumer fails to give the correct response. So, if they fail to say "penis" then they are given a "0". However, for designated items, a "-1" is given for an inappropriate response. As an illustration, if the consumer answers "mouth" on question about private parts on the male body, then the consumer would be given a "-1" for the inappropriate response.
Nine subscales measure consumers’ knowledge about sexuality. The subscales, along with the number of questions in each subscale, the number of response items for each subscale, and the number of inappropriate response (IR) items are shown in Table 1.
Satisfaction Surveys
Satisfaction surveys are distributed to support persons and consumers at the very last group session. One support person in each group session is chosen to administer the satisfaction surveys to the group participants as the Responsible Choices Program educator leaves the room. Next, the support person and the consumer (with the help of the support person) complete the surveys. After the surveys are completed, they are placed into an envelope which is sealed and then given to the Responsible Choices Program educator.
The satisfaction survey for support persons has six items which cover areas regarding (1) the usage of information garnered in the program and (2) how the support person felt about the educators. Sample items include: (a) "The orientation helped prepare me for the educational group sessions," (b) "I would recommend this program to others," and (c) "The trainers were very knowledgeable and explained things well." The consumers also answered six questions regarding their satisfaction with the class. Sample items include: (a) "I felt important in the classes," (b) "The information I learned in the classes will help me," and (c) "The trainers explained things so that I could understand." The response choices on the satisfaction surveys are as follows: 1 = "strongly disagree", 2 = "disagree", 3 = "neither agree nor disagree", 4 = "agree", 5 = "strongly agree." Because the response choices (e.g., strongly agree) may be difficult for some consumers to understand, the support person assists the consumer in completing the survey. The responses are averaged to create satisfaction scores for both support persons and consumers.
Inappropriate Sexual Expressions Scale
The Inappropriate Sexual Expressions Scale was developed to measure the frequency in which consumers are observed in engaging in specific sexual behaviors. Before the program begins, the support person is instructed to record how frequently he/she has witnessed the consumer engaging in each of the 36 behaviors within the previous two months. The support person also makes this assessment approximately 6-8 weeks after the program ends.
The responses range from 0 = "never", 1 = "once", 2 = "a few times", and 3 = "a lot of times." Examples of behaviors surveyed are: (a) masturbating in public, (b) asking non-intimate peers, staff, or acquaintances to engage in sexual acts, (c) touching another adult’s private body parts in public, and (d) hurting others to become sexually stimulated.