Identifying Effective Methods for Teaching Sex Education to Individuals With Intellectual Disabilities: A Systematic Review

Figures & data

Figure 1 The review process.

Table 1. Keywords That Were Used for Building the Search String

Concept	Synonyms or Related Terms	Search Field
Sexuality	Sex or sexual* or condom use or safe sex or birth control or contraception or family planning or homosexual* or gay or lesbian or bisexual*	Abstract, title, keywords
Education	Educat* or promotion or intervention or curriculum or teaching or training or campaign or course or leaflet or folder or movie or film or video or media or quiz or exercise or instruction or learning or class or seminary or counseling or therapy	Abstract, title, keywords
Intellectual disability	Mental* retard* or intellectual disabilit* or learning disabilit* or developmental disabilit* or cognitive disabilit* or intellectual impairment or mental deficiency or mentally defective or psychosocial retard*	Abstract, title, keywords

Table 2. Overview of the Methods Mentioned Most Frequently in the Papers, and Definitions and Parameters for Use (Bartholomew, Parcel, Kok, Gottlieb, & Fernández, 2011)

Method	Definition	Parameters for Use
Modeling	Providing an appropriate model being reinforced for the desired action.	Attention, remembrance, self-efficacy and skills, reinforcement of model, identification with model, coping model instead of mastery model.
Guided practice	Prompting individuals to rehearse and repeat the behavior various times, discuss the experience, and provide feedback.	Subskill demonstration, instruction, and enactment with individual feedback; requires supervision by an experienced person; some environmental changes cannot be rehearsed.
Reinforcement	Linking a behavior to any consequence that increases the behavior's rate, frequency, or probability.	Needs to be tailored to the individual, group, or organization to follow the behavior in time and to be seen as a consequence of the behavior.
(Corrective) feedback	Giving information to individuals and environmental agents regarding the extent to which they are accomplishing learning or performance, or the extent to which performance is having an impact.	Feedback needs to be individual, follow the behavior in time, and be specific.

Table A1. Study Demographics and Goals

#	Year	Author(s)	Country	ID^a or IQ Level	Age Range	Location	n	Female	Goal of the Study
1	1981	Zylla & Demetral	United States	IQ: 58, 50, and 63	Age: 24, 30, and 18	State residential facility	3	3	Investigate effects of modified PSI sex education program on sexual behavior and knowledge.
2	1984	Robinson	Australia	IQ: 50–80	16, 5–52	39 residential, 44 nonresidential	83	45	1. Investigate relationship between the sex of the person with ID and sexual knowledge/attitude. 2. Investigate how sociosexual knowledge/attitudes are influenced by residence. 3. Investigate relationships between exposure to a sex education program, the sex of a person, type of residence, and knowledge of and attitudes toward sociosexual matters.
3	1990	Haseltine & Miltenberger	United States	Mild	22–45	Group home	8	3	Examine effectiveness of a curriculum for teaching self-protection skills.
4	1992	Lindsay et al.	Great Britain	Mild/moderate	17–49 exp./18–43 control	1. 32 home/14 hospital 2. 8 home/6 hospital	46 exp./14 control	20 exp./7 control	Evaluation of acquisition of sexual knowledge.
5	1992	Watson et al.	Australia	Moderate/severe	6–8	Home (with parents or guardians)	7	5	Determine the effects of self-protection skills training on behavior of children with moderate/severe ID.
6	1994	Lindsay, Michie, Staines, & Bellshaw	Great Britain	Mild/moderate	17–49 exp./18–43 control	1. 32 home/14 hospital 2. 8 home/6 hospital	46 exp./14 control	20 exp./7 control	Measure changes in the attitudes of clients toward sexual behavior.
7	1994	Valenti-Hein et al.	United States	Moderate/borderline	18–50	1. 3 family/7 group home/3 independent 2. 5 family/4 group home/4 independent	13 exp./12 waitlist	6 exp./6 waitlist	Increase social skills and social/sexual knowledge.
8	1998	Lee & Tang	China	Mild	Mexp = 13.38/Mcontrol = 13.51 (no range)	Unknown	38 exp./34 control	72	Evaluate effectiveness of a sexual abuse prevention program/investigate negative effects/examine feasibility.
9	1998	Lumley et al.	United States	Mild/moderate	30–42	Group home	6	6	Extend methods to evaluate sexual abuse prevention programs.
10	1999	McDermott et al.	United States	MIQ = 59.9	M = 31.9	73.8% private residence, 26.2% supervised	252	252	Is knowledge increased? How are social skills, hygiene practices, and prior sexual experiences related to sexual knowledge? Does the number of family planning instructional sessions increase knowledge related to sexuality, hygiene, and social skills?
11	1999	Miltenberger et al.	United States	Mild/moderate	33–57	Group home	5	5	Evaluate strategies to enhance generalization.
12	2000	Garwood & McCabe	Great Britain	Mild	28–32	Home (with parents)	6	0	Assess sexual knowledge, experience, and feelings of participants attending two different sex education programs (Co-Care and Family Planning Victoria).
13	2000	Khemka	United States	Mild/moderate	M = 35.75 (no range)	Large nonprofit agency	36 (3 groups)	36	Examine significance of cognitive and motivational factors in interpersonal decision making/enhance quality of decision-making responses.
14	2001	Caspar & Glidden	United States	Mild/moderate	28–62	Unknown	12	9	Increase level of positive sexual expression and experience.
15	2005	Khemka et al.	United States	Mild/moderate	M = 34.31 (no range)	Family or independent	18 exp./18 control	36	Measure effectiveness of a curriculum on decision making.
16	2007	Egemo-Helm et al.	United States	Mild/moderate	28–47	6 group home/1 alone	5	5	Evaluate behavioral skills training combined with in situ training.
17	2009	Bollman & Davis	United States	Mild	49–51	State-operated residential facility	2	2	Extend research in the area of sexual abuse prevention.
18	2009	Dukes & McGuire	Ireland	Moderate	22–23	Community group home	4	2	Find out whether education improves capacity to make sexuality-related decisions (skill?).
19	2011	Hayashi et al.	Japan	Mild/moderate/severe	19–45 exp./19–56 control	Transition dormitory	17 exp./17 control	4 exp./6 control	Improvement of social skills and effects of participation by volunteers and training outside the facility.
20	2012	Wells et al.	United States	Mild/moderate	24–59	14 independent 11 semi-independent	25	25	Teach women with ID about HIV prevention.

^aIntellectual disability (ID) level: borderline = IQ between 70/75–80/85; mild = IQ between 50/55–70; moderate = IQ between 35/40–50/55; severe = IQ between 20/25–35/40 (DSM-IV-TR [American Psychiatric Association, 2000]).

Table A2. Study Design, Goals, and Program Details

Author	Subgoals/Implicit Goals	Design	Control Group	Training/Material/Program
Zylla & Demetral, 1981		Multiple baseline/two-week follow-up	No	Sex Education Family Planning Course for People: Gender identification, biological identification, sexual intercourse, pregnancy, hygiene, contraception, and venereal disease.
Robinson, 1984		2 (exp. versus control) × 2 (institutional residence versus noninstitutional residence) × 2 (male versus female) experimental design (pretest-posttest)	Yes	Ten week course: anatomy of sexual organs, typical sexual development, varieties of sexual behavior, conception, gestation and birth, contraception and venereal disease, interpersonal relationships, sexual values and decision making, relationships between self-concept and sexuality.
Haseltine & Miltenberger, 1990		Multiple baseline/one- and six-month follow-up	No	Curriculum: private body parts, discrimination of good and bad touch, three safety skills (say no, get away, and tell).
Lindsay et al., 1992		Pretest/posttest/three-month follow-up	Yes	Course: basic areas of body, male/female puberty, social interaction, sexuality and childbirth, birth control, venereal disease, parenting and marriage. Film on sexual intercourse and development of a fetus. Social skills training.
Watson et al., 1992		Modification of multiple probe design/follow-up (unknown when)	No	No! Go! Tell! Program: Teach what a stranger is and who is and who is not; learn rules about strangers (No! Go! Tell!); use rules in different settings.
Lindsay et al., 1994		Pretest/posttest/three-month follow-up	Yes	Course: basic areas of body, male/female puberty, social interaction, sexuality and childbirth, birth control, venereal disease, parenting and marriage. Film on sexual intercourse and development of a fetus. Social skills training.
Valenti-Hein et al., 1994		Pretest/posttest/eight-week follow-up	Yes	Dating skills program: Videotaped role-playing tape.
Lee & Tang, 1998		Pretest/posttest/two-month follow-up	Yes	Behavioral skills program: knowledge on abuse and self-protection skills (say no, get away from situation, and tell someone). Attention control program: general safety skills.
Lumley et al., 1998	Increase sexual abuse prevention knowledge and skills	Multiple baseline/one-month follow-up	No	Behavioral training: (1) verbally refuse request, (2) leave situation, (3) report incident.
McDermott et al., 1999		Pretest/posttest (one-year assessment)	No	Family Planning Program: Content is selected based on what the participant wants. No topics were required.
Miltenberger et al., 1999		Multiple baseline/one-month follow-up	No	Ten-week behavioral skills training: (1) does not comply with requested behavior, (2) verbally refuses, (3) leaves the situation or tells staff to leave, (4) reports incident.
Garwood & McCabe, 2000		Pretest/posttest	No	Cocare topics: feelings, body language, social skills, human life cycle, puberty, body awareness, private and public behavior, sexual relationships, conception, contraception (including safe sex, STDs), menstruation, and protective behaviors. Family Planning Victoria topics: self-awareness, feelings, body parts and behavior, relationships and friendship, protective behavior, sexual relationships, contraception, and AIDS. Both programs were based on practical experience.
Khemka, 2000		Pretest/posttest	Yes	Three groups: (1) decision-making training, (2) self-directed decision-making training, (3) control (regular education).
Caspar & Glidden, 2001	Enhance sexual awareness, knowledge, and attitudes	Pretest/posttest	No	Multisession program containing topics on STDs, birth control, reproductive systems, menstrual cycle, circle concept for relationships.
Khemka et al., 2005		Pretest/posttest/one- to three-week follow-up	Yes	ESCAPE curriculum (decision-making strategies).
Egemo-Helm et al., 2007	Improve sexual abuse prevention skills (implicit)	Multiple baseline/one- and three-month follow-ups	No	Behavioral skills program (correct safety responses): say no, leave the situation, tells the confederate to leave, report incident.
Bollman & Davis, 2009	Increase skills to identify inappropriate situations (implicit)	Multiple baseline design/two- and four-week follow-ups	No	Uses scenarios depicting appropriate and inappropriate (physical, physical-sexual, verbal, sexual-verbal abuse) staff-client interactions.
Dukes & McGuire, 2009	Measure change in knowledge → indirectly measuring capacity to make sexuality-related decisions	Multiple baseline/week 46 follow-up	No	Sex education drawn from: Living your life (anatomically detailed dolls, drawings, worksheets).
Hayashi et al., 2011		Pretest/posttest	Yes	Sex education program of eight sessions including social skills sessions: body grooming and cleanliness, first impression and thinking toward your partner, communication training, self-assertiveness training, manners in public spaces, sexual harassment, male-female relationships, differences between male and female bodies.
Wells et al., 2012		Within subjects quasi experimental design/pretest/posttest	No	Program containing a knowledge-based/social behavioral skills model. Computer-based interactive multimedia HIV prevention program. Content: Transmission of HIV through sexual contact, HIV avoidance strategies, getting tested for HIV, taking responsibility for condom use.

Table A3. Study Methods and Outcome Measures

Author	Reported Methods	Determinants	Outcome Measure	Measure Type
Zylla & Demetral, 1981	Social reinforcement, feedback/active learning, repetition/overlap, chunking	Knowledge	Correct responses to questions (questions unknown).	Interview (questions)
Robinson, 1984	No description	Knowledge, attitudes	Pretest/posttest scores on the Socio-Sexual Knowledge and Attitude test.	Questionnaire
Haseltine	Modeling, rehearsal, feedback, role-play	Knowledge, skills	Response of participant to probe (research assistant acting as abductor).	Role-play (in situ assessment), questionnaire
Lindsay et al., 1992	Film, role-play (in film)	Knowledge	Questions related to the subjects of the program.	Questionnaire (verbal)
Watson et al., 1992	Small groups, discussion, information, role-play, imagery, modeling, rehearsal	Knowledge, skills	In situ assessment. Tested on five occasions (in nine weeks).	In situ assessment
Lindsay et al., 1994	Role-playing (not clear)	Knowledge, attitudes	Questionnaire to assess sexual knowledge and attitudes toward sexual relationship (Fischer, Krajicek, & Borthick, 1973).	Questionnaire (verbal)
Valenti-Hein et al., 1994	Discussion, rehearsal, role-playing, feedback	Knowledge, skills	Behavioral observations, Social Avoidance and Distress scale (SAD), Stacking the Deck Baseline procedure (STD), Role-Play test (RPT).	Questionnaire (Likert-type scales), observation
Lee & Tang, 1998	Self-protection skills: instruction, modeling, behavioral rehearsal, shaping, social reinforcement, feedback; Safety skills: instruction, modeling, rehearsal, social reinforcement, feedback	Skills, knowledge	“What if” situation test (participants' response to abusive situations). Personal safety questionnaire (assess knowledge about sexual abuse). Fear assessment thermometer scale (side effects measure).	Questionnaire, verbal report
Lumley et al., 1998	Instructions, modeling, rehearsal, reinforcement, corrective feedback, role-play	Knowledge, skills	Closed-end questions to assess knowledge, verbal response to a given scenario, role-play assessment.	Questionnaire, verbal report, observation
McDermott et al., 1999	Tailoring, directed conversation, prompting, coaching, identification of natural supports, discussion, images, reinforcement	Knowledge	Social Sexual Assessment: sexuality and family planning knowledge and behavior (hygiene, social interaction, and sexual knowledge).	Questionnaire
Miltenberger et al., 1999	Information, instructions, rehearsal/ role-play, reinforcement/ corrective feedback, variety in people/scenarios/locations	Knowledge, skills	Response to several abusive scenarios was assessed (0: incorrect response; 4–100%: correct response). Skills were assessed through role-play. Generalization assessed through in situ assessments.	Verbal report (knowledge)/correct responses to scenarios/role-play (skills), observation/in situ assessment
Garwood & McCabe, 2000	Both: experiential learning, for the rest unclear	Knowledge, skills	SexKen ID (sexual knowledge).	Questionnaire
Khemka, 2000	Decision-making training: visual mapping, alternative thinking, consequence perception, probing, discussion, practice skills; Self-directed decision-making training: added is enhanced motivational framework (generating personal goals, guided practice)	Skills	Social interpersonal decision-making video scale, self-social interpersonal decision making scale, locus of control scale.	Interview, questionnaire
Caspar & Glidden, 2001	Tailoring, the rest unclear	Knowledge, attitudes	Knowledge on sexuality related topics, attitude.	Questionnaire
Khemka et al., 2005	Modeling, guided practice, images, discussion, support, chunking	Knowledge, skills	Decision-making video scale, knowledge of abuse concepts scale, empowerment scale, stress management survey, self-decision-making scale.	Questionnaire
Egemo-Helm et al., 2007	Information, modeling, rehearsal, role-play, feedback, reinforcement, generalization	Knowledge, skills	A score was given to the behavior (0: not performing target behavior; 4–100%: performance of target behavior).	Self-report (knowledge), role-play, in situ assessment
Bollman & Davis, 2009	Modeling, reinforcement, corrective feedback, role-play	Knowledge, skills	Skills: Correct number of steps taken by the participant one to three days after successful completion of the program (follow-up, two and four weeks).	Role-play (acting out the response after seeing a video with scenario)
Dukes & McGuire, 2009	Imagery, tailoring, one on one	Knowledge	Knowledge on topics like safety practices, physical self, sexual functioning, choices and consequences in sexual matters.	Questionnaires: SCEA S and SCEA K-scales
Hayashi et al., 2011	Discussion, practice skills, role-play, imagery (actual human body models)	Skills	KiSS-18 (measures three skills: communication, management, and problem-solving) + process evaluation (enjoyment, difficulty, and usefulness).	Questionnaire
Wells et al., 2012	Modeling (social learning theory), practice, feedback, images	Knowledge, skills	Items from several existing questionnaires.	Interview (questions), demonstration of condom use skills, audio computer assisted interview (A-CASI)

Table A4. Study Strengths and Limitations

Author	Number of Sessions	Reported Findings	Ecological Validity	Strengths/Limitations
Zylla & Demetral, 1981	Three months, two sessions per week, one hour	Increase in knowledge, even when trainer was inexperienced.	None.	−No info on quality of the program −No specific goals ±Methods are mentioned, but no details +Follow-up +Increase in knowledge −Small N, difficult to generalize results −Effect on overall sexual health unknown
Robinson, 1984	Ten weeks, unknown how many sessions	No significant difference in knowledge between sexes. Greater sexual knowledge among community based participants (IQ of residential participants was significantly lower [three points]). Significant increase in sociosexual knowledge after sex education program. Evidence for positive change in attitudes.	None.	−No info on quality of the program −No specific goals −No methods are reported +Control group −No follow-up +Increase in knowledge −Small N, difficult to generalize results −Effect on overall sexual health unknown
Haseltine & Miltenberger, 1990	Nine sessions, 25 to 30 minutes	Self-protection skills improved for 7 out of 8 participants; 5/6 skill maintenance at one-month follow-up and 5/6 at six-month follow-up.	In situ assessment; however, focused on abduction, not sexual abuse.	−No info on quality of the program +Clear goals for safety skills ±Methods are mentioned, but with a brief description +Follow-up +In situ assessment −Small N, difficult to generalize results
Lindsay et al., 1992	Period of nine months, no info on how many sessions	Knowledge improved significantly on all subjects. Knowledge was maintained after a three-month follow-up.	None.	−No info on quality of the program −No specific goals −No description of methods +Follow-up −Size control and intervention group differ −No info on number of sessions +Knowledge improved −Effect on overall sexual health unknown
Watson et al., 1992	15 sessions, 25 minutes	Training was effective in modifying self-protective skills. Gains for two participants were marginal. Skills can be generalized to other environments.	In situ assessment.	+Clear description of sessions +Specific target behaviors +Description of methods and their applications −Unknown when follow-up takes place +In situ assessment +Skills improved in most participants −Small N, difficult to generalize results
Lindsay et al., 1994	Period of nine months, no info on how many sessions	Sexual knowledge increased in posttest and follow-up. Attitudes became less conservative after the sex education program.	None. Only change in knowledge and attitudes was measured.	−No info on quality of the program −No specific goals −No description of methods +Follow-up −Size control and intervention group differ +Attitudes become less conservative ±Effect on overall sexual health unknown
Valenti-Hein et al., 1994	Six weeks, two sessions per week	Improvement in social skills and social knowledge. Social anxiety did not change over time. Maintenance of skills and knowledge at follow-up.	Naturalistic observation during midsession breaks.	+Info on quality of the program +Info on content of the program −No specific goals +Description of methods −No parameters for use +Follow-up +Naturalistic observation +Skills and knowledge improved −Social anxiety did not decrease
Lee & Tang, 1998	Two sessions, 45 minutes	Recognition of appropriate touch requests increased but was not maintained. Increase in knowledge about sexual abuse and was maintained. Self-protection skills increased and were maintained; clinical significance, however, less promising. Participants showed less fear after two months.	None.	+Info on quality of the program +Description of the program ±Methods are mentioned, but no details −No specific goals +Follow-up +Control group −No in situ assessment +Knowledge increased −Knowledge not always maintained
Lumley et al., 1998	Five sessions	Criterion performance for both verbal report and role-play measures. No criterion performance for naturalistic assessment, therefore complete generalization was not achieved. Increase in knowledge. 5/6 skill maintenance at one-month follow-up (role-play assessment).	In situ assessment.	−No info on quality of the program +Detailed description of sessions +Specific target behaviors +Description of methods −No parameters for use +Follow-up +In situ assessment −Small N, difficult to generalize results −Failed generalization of skills to target situation
McDermott et al., 1999	No exact numbers; more retention for those who had more sessions	Knowledge and hygiene increased for those with intense training (however, no control). Unknown how knowledge related to future (sexual) behavior.	None.	−No info on quality of the program −No specific goals ±Methods are mentioned, but no details −No control condition −One question on sexual behavior +Large N +Increase after 1 year in hygiene and sexual knowledge was related to number of sessions
Miltenberger et al., 1999	Ten weeks, one hour per week	After four to eight sessions, all subjects achieved the maximum score in the role-play assessment. In situ training was needed for generalization of skills. 1/4 had maximum score of 4 after one month; the others scored 3.	In situ assessment.	+Info on quality of the program +Info on content of the training +Specific target behaviors +Description of methods −No parameters for use +Follow-up +In situ assessment +Skills improved −Skills did not fully generalize to target situation −Small N, difficult to generalize results
Garwood & McCabe, 2000	Co-Care: Ten sessions (two hours) Family Planning Victoria: Six sessions (one hour)	Quantitative data analysis not possible. Low levels of sexual knowledge were maintained (only minimal increase).	None.	−Programs only based on practical experience −No specific goals −No description of methods −No follow-up −No control group −Small N −Increase in knowledge minimal
Khemka, 2000	Ten sessions	Decision-making scores increased in both experimental groups but was greater for self-directed decision making; self-directed decision making also led to more internal locus of control.	None. No realistic assessment used.	+Theoretical background on training construction +Detailed description of program −No specific goals +Explanation of methods −No follow-up +Control group −No in situ assessment +Improvement greater for self-directed decision making −Small N, difficult to generalize results
Caspar & Glidden, 2001	Six sessions	Increase in knowledge, alteration in subjective perception (more liberal attitude, small change), anecdotal evidence of increased awareness, ability to make decisions about sexuality decreased.	None.	±References regarding effectiveness of program, but details are lacking +More detailed goals in appendix −Many goals geared toward obtaining knowledge ±Description of what program did, but unclear what the theoretical basis was −No follow-up −No control group −Behavior not measured +Increase in knowledge −Decrease in decision making abilities −Small N, difficult to generalize results
Khemka et al., 2005	Six to 12 weeks, once or twice a week, 40 to 50 minutes (five sessions)	Scores on knowledge, empowerment, and self-decision making increased. Problems with attaining the right amount of knowledge in some areas. Postintervention performance did not approach mastery. May be due to low number of sessions.	None.	+Theoretical background on training construction +Detailed description of program −No specific goals ±Methods were described, but no details of some methods +Follow-up +Control group −No in situ assessment −High dropout in control in follow-up +Increase in knowledge on abuse concepts
Egemo-Helm et al., 2007	Seven to 13 sessions	For some generalization was obtained (3/5). One needed 12 in situ training sessions. For one participant generalization failed. Declining scores on follow-ups show maintenance of skills is needed. 3/4 skill maintenance at one-month follow-up and 2/4 at three months.	In situ assessment.	+Theoretical background on training +Appendix contains detailed info of training components +Specific target behaviors +Methods were described +Follow-up +In situ assessment +Response toward sexual solicitation was assessed +Generalization of skills for 3/5 participants −Small N, difficult to generalize results
Bollman & Davis, 2009	Training until 100% correct response Amy: Five sessions Cindy: Ten sessions	An increase in 100% correct responses during role-play in both participants.	None.	+Background info on training +Description of the training −Unclear which responses are analyzed; only few are mentioned +Follow-up −No in situ assessment of abusive situations +Reporting skills increased −Small N, difficult to generalize results
Dukes & McGuire, 2009	Nine sessions? (not explicitly mentioned)	Knowledge was improved in all participants (higher scores on questionnaire were correlated with greater capacity to make sexuality-related decisions). Reduction in some aspects of knowledge at follow-up.	No information on effect of education on daily lives.	−No info on quality of the program −No info on content of the program +Clear target behavior −Unclear how education leads to improved capacity to make sexuality-related decisions +Follow-up −No in situ assessment +Knowledge increased −Capacity to make sexuality-related decisions not directly measured −Small N, difficult to generalize results
Hayashi et al., 2011	Eight sessions	High scores for enjoyment and usefulness, low scores for difficulty. Scores on KiSS increased for experimental group. Volunteers (students) positively influenced attendance and improvement of social skills.	None, experimental design.	−Unknown how program was developed +Description of program content −No specific goals +Some methods were mentioned −No parameters for use −No follow-up +Control group −Pretest scores differ −Skills measured with questionnaire −Small N, difficult to generalize results
Wells et al., 2012	Unknown	Gain in HIV knowledge, condom application skills, risk perception, and condom use intent, medium to large effect sizes. Knowledge and skills can be taught using interactive technology.	None.	+Info on theoretical background of program +Description of program components −No specific goals +Description of methods −No follow-up −No control group −Unknown how many sessions +Increase in knowledge and skills

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