Persons with intellectual disability: Sexual behaviour, knowledge and assertiveness

The study was conducted in the residential facility “Otthon” in Stara Moravica, Serbia. Currently 299 persons with moderate and severe ID reside in this facility.

Questionnaires were completed individually, in the form of interviews: the examiner asked questions and wrote down the participants’ answers. If necessary, the examiner provided additional explanations to the participant.

Table 1 shows the average scores on scales used in this study. The performed analysis indicates that the distribution of results on all three questionnaires corresponds to the normal distribution (for total scores). The results show an extremely low level of knowledge of sexuality, both when the total score is observed and the scores on individual sections. Participants obtained very low scores on the test of sexual assertiveness and on the What-if test as well.

In order to establish if there is a connection between the scores on tests of sexual knowledge (General Sexual Knowledge Questionnaire and What-if test) and scores on sexual assertiveness (Hulbert index of sexual assertiveness) we applied the Pearson coefficient of linear correlation (Table 2). With regard to the correlations among these phenomena, we found only one statistically significant correlation, between the score obtained on the What-if test and score on the General Sexual Knowledge Questionnaire. The correlation was of moderate intensity and in the positive direction (r=0.360; p<0.01). The higher the level of knowledge of sexuality a person has, the better they are able to deal with “problem” situations regarding sexuality. None of the remaining correlations between the variables we investigated reached statistical significance; this result indicates that sexual assertiveness is a skill independent of knowledge and formal education with regard to sexuality and reproductive health.

In order to determine the proportion of variance of sexual knowledge (General Sexual Knowledge Questionnaire and What-if test) that can be explained by the variance of different socio-demographic variables and other significant variables, we performed a series of multiple regression analyses. The set of predictors included the following variables – gender, age, time spent in the institution and sexual activity. Criterion variables were total scores on the following tests: General Sexual Knowledge Questionnaire, What-if test and Hulbert index of sexual assertiveness. Preliminary analyses were conducted to check for significant deviations from the expected normal distribution, linearity, multicollinearity and homoscedascity.

The first model tested the predictive value of gender, age, time spent in the institution and sexual activity for general knowledge of sexuality. The model was statistically significant F(4, 95)=6.842, p=0.000. The multiple correlation coefficient was R=0.473. The percentage of variance on the General Sexual Knowledge Questionnaire explained by the predictor variables was 22.4%. The variables Gender and Are you having sexual intercourses? had significant individual contributions to the prediction (Table 3). Both correlations were positive, but the variable pertaining to having sexual intercourses had a slightly higher individual contribution to the prediction (β coefficient). Females and those having sexual intercourses scored higher on the General Sexual Knowledge Questionnaire.

The model was statistically significant in the prediction of success on the What-if test F(4, 95)=4.832, p=0.001. The multiple correlation coefficient was R=0.411. The percentage of variance on the What-if test explained by the set of predictor variables was 16.9%. The variables Gender and Age (Table 3) had significant individual contributions to the prediction. Both correlations were positive, but the variable Age had a slightly higher individual contribution to the prediction (β coefficient). Females and persons of older age scored higher on the What-if test.

The predictive model of sexual assertiveness was also statistically significant F(4, 95)=3.765, p=0.007. The multiple correlation coefficient was R=0.370. The percentage of variance of the Hulbert index of sexual assertiveness explained by the predictor variables was 13.7%. Only the variable/question Are you having sexual intercourse? (Table 3) had a significant individual contribution to the prediction. The correlation was negative and of moderate intensity (β=-0.317). Therefore, individuals who actively practiced sex had a lower total score on the Hulbert index of sexual assertiveness.

The results indicate that most persons with ID who participated in the study were sexually active. At the time the study was conducted 54% of participants claimed to have a sexual partner, while 46% reported the contrary. A total of 82% of participants reported having sexual experiences, while 18% had never been involved in sexual activity. These findings confirm that persons with ID have sexual needs and the capacity to engage in sexual behaviour. Gil-Liario and colleagues (2) obtained similar results, and their study showed that 84% of participants had previously had sexual intercourse with another person, with a greater proportion of women in this category (2).

The General Sexual Knowledge Questionnaire consists of six sections on which our participants had rather heterogeneous results. The best results were obtained in the section of Physiology, which examines the respondents’ knowledge of body parts. Our participants had no difficulty identifying and naming external body parts; there was, however, a problem with identifying internal organs, such as the ovaries, uterus and testicles.

In their own study, Isler and colleagues also obtained results that indicate that respondents with ID had difficulty in identifying internal reproductive organs (34). In Kijak’s study, 90% of participants answered questions on female and male bodies accurately (1). In our study all participants (100%) answered questions that asked them to identify external body parts (head, arm, leg, stomach, and chest) correctly, but had poorer results when it came to identifying internal body parts (testicles, ovaries, and vagina). It was our hypothesis that educational programs dealing with internal body parts and elements of sexual health, which require a certain level of abstraction in order to be fully understood, need to be better adapted to persons with ID.

Persons with ID often request education and support from peers, supervisors and other professionals in the domain of sexuality (35). In our study the participants scored low in the domain of knowledge of sexual intercourse, which should be especially addressed in educational programs. In a study conducted by Edmondson, respondents answered 70% of questions on body parts and sexual intercourse

correctly (36). However, in more recent studies (34, 37) participants scored much lower on questions concerning Sexual intercourse.

Our participants displayed rather poor knowledge of Pregnancy, Contraception and Sexually transmitted diseases. Lockhart also reached a conclusion that persons with ID have substantial knowledge of body parts and on intimate behaviour (holding hands or kissing), while their knowledge of pregnancy and childbirth is very poor (38). Poor education and, to a significant degree, isolation of persons with ID in institutional housing can cause a lack of information and skill in the domain of sexuality, but with appropriate education and good social support, people with ID are capable of improving both their sexual knowledge and behaviour.

Eastegate and colleagues (39) found their study participants’ knowledge of sexuality varied from extremely basic, without understanding the concept of sexual intercourse, to rather complex, including understanding the process of egg fertilization. Younger participants identified school as their primary source of information, while older ones stated that they did not even realize you could talk about these issues at school. Other sources of information listed by persons with ID included books, talking to their mothers or professionals. The participants confirmed having difficulty behaving assertively in relationships and being mostly unable to protect themselves from unwanted sexual experiences. In our study, most participants admitted to sometimes having sexual intercourse against their wishes and having difficulty asserting themselves, which is in line with results obtained by Eastegate and colleagues (39). We can look for causes for this behaviour in the domain of individual characteristics, factors associated with the perception of the risk of SA and factors linked to the possibility of reporting on the abuse actually taking place (2, 22). It is also important to consider housing conditions and the lack of independence of persons in institutional housing. This subject requires further investigation.

The What-if test was created with the purpose of preventing sexual abuse. Our participants were shown to be mostly aware of basic risk situations and that they could ask for help if they ever found themselves in them. However, their strategies for dealing with potentially dangerous situations were far from adequate. We presume that the support and education offered to persons with ID do not include role-playing situations, and that the information the participants acquire in such education is not applicable to real-life situations. The results of the study conducted by Lee and Tang indicate that persons with ID are able to differentiate between appropriate and inappropriate situations, but they are far less successful when it comes to reporting the latter and asking for help (40), which is in accordance with the results of our study.

We tried to ascertain which groups of participants, with regard to sexual activity and socio-demographic parameters, have lower knowledge of sexuality, low sexual assertiveness and are the least prepared to prevent sexual abuse. We found female participants and those having sexual intercourse to score higher on the General Sexual Knowledge Questionnaire. Within our sample group there were women who had carried one or more pregnancies to term. During their pregnancies they had experiences and communication with health-care workers and other professionals which allowed them to widen their knowledge of sexuality. Moreover, women who reside in institutions are educated on self-care in the context of menstruation and contraception, which can all be predictors of the observed gender differences. Other studies (14) show no influence of gender and age on knowledge of sexuality (40), while the effect of age was found by other research (42). However, age did not turn out to be a significan predictor in our own study.

The literature available to us does not explain if the previous sexual experience of persons with ID correlates with their level of knowledge of sexuality. Michie and colleagues (43) conducted a study which showed that individuals with ID who had commited a sex-related crime knew more on sexuality compared to non-offenders. We can hypothesize that the reason for this lies in the fact that sexual perpertrators have had more specific experiences which are not available to other persons with ID (43). Lambrick and Glaser (44) reported numerous examples of people with ID who, despite their impairment, have highly developed social skills and are completely able to understand problems associated with sexuality. Presumably these persons obtain their information via television shows or by talking to family and friends (44). The results of our study show sexual activity to be predictive of higher levels of knowledge of sexuality, i.e. study participants who are sexually active have more knowledge about sexuality compared to those without sexual experiences. Moreover, the sexually active participants score higher on the Hulbert index of sexual assertiveness, whereas no sociodemographic variable makes any difference in the sexual assertiveness of persons with ID in the current study. When we observe the results obtained from the What-if test that are indicative of how prepared persons with ID are to prevent sexual abuse, we can see that older women are the most prepared.

Taking into account the results of these earlier studies as well as our own, we can create an educational program that would involve learning specific self-protection skills and ways to apply them in specific risk situations, as other authors have done (45). All the authors in the literature we examined agree that there are many potential adverse consequences of poor knowledge about sexuality among persons with ID. Incomplete or inadequate knowledge can increase the risk of sexual abuse, sexually transmitted diseases and unwanted pregnancy (46). Most participants in our study demonstrated a low level of knowledge of sexuality and similar issues, which is very important for future practice since most of the participants are currently involved in the process of deinstitutionalization, which will bring new challenges in the years to come.

Several limitations of the present study need to be acknowledged. First, the participants were recruited from a single housing institution for adults with ID, which limits the generalizability of results. Second, the sample included only participants with moderate ID. The participants were also assisted by examiners in answering the questions, which is a possible confounding factor we attempted to control as much as possible. However, we must consider the possibility of the difficulties the participants experienced in understanding questions and verbalizing answers, and this may have impacted the results.

With adequate support persons with ID can learn how to react in order to prevent high risk situations that involve sexuality. It is thus crucial to teach them to recognize potential abuse, give them information on how to react in such situations and who to report them to. All the results of this study are very important to us, especially information regarding the groups of participants that have the least knowledge and assertiveness, so that these individuals can be included in future programs that will be created for persons with ID. Adequate sexual education can only be efficient if what is learned can be applied to the actual situations and experiences of individuals with ID. Such programs are highly relevant for the process of (re) habilitation, as well as for encouraging the independence and social participation of people with ID.