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O R I G I N A L P A P E R

A Study on Sexuality with the Parents of Adolescents

with Intellectual Disability

Aysegul Isler  Dilek Beytut  Fatma Tas  Zeynep Conk

Published online: 22 September 2009  Springer Science+Business Media, LLC 2009

Abstract   The objective of this study was to determine the knowledge, opinions, attitudes

and concerns of the parents regarding sexuality of their children with intellectual dis-

abilities. Forty parents who have children with intellectual disabilities formed this study’s

sample from Turkey. The children had mild to moderate intellectual disabilities aged

between 15 and 21 years in an occupational school. The data taken from questionnaires

was evaluated with SPSS 13.0 package program. 87.5% of the parents consisted of mothers

and 12.5% consisted of fathers. Seventy five percent of the parents had not received anyprofessional education on sexuality and 32.5% never talked on sexuality with their chil-

dren. Fifty-five percent of the parents thought that sexual education should start during

elementary school years. While 45% of the parents acknowledged their children engaging

in masturbation, more than half had false opinions on masturbation. 57.5% of the parents

stated that they inform their children on the physical characteristics of the adolescence

period and 27.5% of them provide information to their children on subjects like the

reproductive organs. In addition, a large majority of the parents (72.5%) had concerns

regarding the future of their children. The parents of the adolescents with intellectual

disabilities had not received any professional education on sexual development. It is very

crucial that parents with children who have special needs be informed by health care

professionals.

Keywords   Sexuality    Parents    Adolescent    Intellectual disability  

Turkey

A. Isler (&)

Department of Pediatric Nursing, School of Health, Akdeniz University, 07058 Antalya, Turkey

e-mail: gulisler@yahoo.com

D. Beytut   F. Tas    Z. Conk 

Department of Pediatric Nursing, School of Nursing, Ege University, Izmir, Turkey

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Introduction

Sexuality is an important part of being a human being. Psychoanalysts viewed libido, or

sexual energy, as the energy of all the life instincts that serve the purpose of survival of the

individual and the human race, growth, development and creativity [1]. In general, sexu-ality is still a taboo subject, and up to the present time, the sexuality of individuals with

intellectual disabilities has been a matter of both fear and denial [2]. For centuries,

numerous myths prevailed, alleging that people with intellectual disabilities were asexual,

oversexed, sexually uncontrollable, subhuman, dependent and childlike [3–8]. Even today,

many people refuse to acknowledge that all people have sexual feelings, needs, and desires,

regardless of their physical and/or intellectual abilities. The fact is that people with dis-

abilities have the same feelings, needs, and desires as people without disabilities. They

have the rights to take sexuality education, sexual health care and opportunities for being

socialized and sexual expression [9, 10]. As adolescents, they need touching and physical

contact; as they grow older, their interests in love and relationships will emerge [11]. But

many young people who live with disabilities do not receive sex education, either in school

or at home. This makes sexuality education an issue of gaining utmost importance.

Parents are their children’s primary sex educators, but many parents are afraid of talking

to their children (disabled or not) about sex. Parents often fear that: (1) Talking about sex

will encourage sexual experimentation; (2) The parents do not know enough to handle

questions appropriately; and (3) Their children already know too much or too little. They

often do not know when or how to start these conversations, that they feel ill-equipped to

handle discussions, and that even those parents who are talking to their children about

sexuality are not spending enough time on these issues [12,   13]. The adolescents withdisabilities experience sexual desires and interests even when no one is talking to them

about their feelings. Teachers, parents and health care providers must understand these

issues and offer help. The role of health care providers includes prompting families and

caregivers to provide basic education about sexuality. They can help prepare these indi-

viduals to develop healthy relationships and protect themselves from unhealthy situations

[3,  5, 11,  14,  15].

It is highly important for adolescents with intellectual disability to be informed correctly

and accurately about their sexuality and reproductive health for their well being in the

society. Sex education comprehensible to children and youths with disabilities sets the

stage for a healthier, safer, socially acceptable and more fulfilling sexual life in adulthood.Therefore, this study aimed to examine the knowledge, opinions, attitudes and concerns of 

the parents regarding sexuality of their children with intellectual disability.

Research Questions

The research questions explored in this study were as follows:

1. What is the parents’ level of knowledge about the sexuality of their child with

intellectual disability?

2. What are the parents’ opinions about the sexuality of their child with intellectualdisability?

3. What are the parents’ attitudes about the sexuality of their child with intellectual

disability?

4. What are the parents’ concerns regarding the sexuality of their child with intellectual

disability?

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Methods

This descriptive study examined the knowledge, opinions, attitudes and concerns of the

parents who have a child with intellectual disability regarding sexual development. The study

was carried out with parents who have a child with mild to moderate intellectual disabilities,15 years old and above, who were training in an occupational school in Turkey.

Sample

This study was conducted in an occupational school in Turkey. This school accepts mildly

and moderately students with intellectual disabilities fifteen or older, who completed

elementary education. In Turkey, elementary education is 8 years and is obligatory. The

study’s sample included 40 parents whose children were trained in this school.

Materials

A questionnaire developed by the researchers was used in data collection. In the first

section of the form, there were ten open-ended and multiple choice questions asking for the

sociodemographic data of the parents. In the second section, there were 13 multiple choice

questions asking for the knowledge, opinions, attitudes and concerns about the sexuality of 

their children. The last section of form included one open-ended question; ‘‘For which of 

your questions do you want to take responses during the sexuality education program?

Answering the questionnaire took approximately 30 min.

All parents were trained on adolescence and sexual development issues by theresearchers following the data collection process. Training included characteristics of the

adolescence, female/male genital organs, menstruation period, pregnancy, masturbation,

sexual intercourse and prevention of sexual abuse. Also parents’ questions and concerns on

their children’s sexuality were discussed. This training required two 45 min sessions.

Limitations are acknowledged in the study design, such as random sampling, established

reliability and validity of assessment instrument, specific cultural issues; and guide the

discussion remarks.

Method of Data Processing

The data, obtained by the surveys which were prepared by the researchers were analyzed

and evaluated in terms of number, percentage with SPSS 13.0 package program.

Ethical Considerations and Aspects

The legal permission to conduct the research was taken from the school ethics committee

Prior to the implementation the teachers, adolescents and their families were given

information about the study. A comfortable and quiet environment was provided for the

parents to complete the questionnaire.

Results

Thirty-five (87.5%) parents consisted of mothers and five (12.5%) consisted of fathers. The

ages of the parents ranged from 34 to 69, with an average age of 43.3  ±  6.6 years. Seventy

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percent of the parents were graduated from elementary school and 80% of them had one or

two kids. 72.5% of the parents had a boy with an average age of 16.8 ±  1.5 years

(Table 1).

In this study it was found that 75% of parents participating in the study did not have

education on sexuality; 55% of them thought sexual education should start during ele-

mentary school years; 47.5% of the them consulted to their spouse about sexuality subject;

42.5% of them did not give any sexual education and 32.5% of them never talked to their

children about sexuality. It was determined that 37.5% of the children asked about sexu-

ality to their mother and that 67.5% of them shared their private affairs with their parents.

Parents informed their children on the development character of adolescent and repro-

duction organ by 57.5 and 27.5%, respectively. Forty five percent of parents implied that

Table 1   Parents’ socio-demo-

graphic characteristics  Characteristics   n   %

Parents role

Mother 35 87.5

Father 5 12.5

Parents age

34–39 13 32.5

40–49 20 50.0

50–69 7 17.5

Parents level of education

Elementary 28 70.0

High school 8 20.0

University 4 10.0

WorkingYes 16 40.0

No 24 60.0

Gender of children

Girl 11 27.5

Boy 29 72.5

 Age of children

15–18 31 77.5

19–21 9 22.5

 Number of children1–2 32 80.0

C3 8 20.0

Type of family

Nucleus family 37 92.5

Large family 1 2.5

Interrupted family 2 5.0

 Income of family

Income\outlay 18 45.0

Income  =  outlay 20 50.0

Income[outlay 2 5.0

Total 40 100.0

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their children masturbated and 57.5% of them found it normal for their children to engage

in masturbation in convenient place (Table  2).

When parents were asked ‘‘for which questions do you want to take response in this

sexual education program’’; 72.5% said ‘‘I wonder about my kid’s future ,   if something

happens to me what can my kid do? 47.5% said ‘‘My kid wants to get married, what shouldI tell him/her?’’ 45% said ‘‘My kid wants to have a girl friend/a boy friend, what must I do?

(Table 3).

Discussion

Studies related to the sexuality of the individuals with intellectual disability and parents’

approach to this issue are limited. The historic perception of these ‘‘disabled people’’ as

asexual has made it more difficult to assess this subject. Currently, it is specified that the

individuals with disability also need to be given the opportunity to experience their sexual

behavior in a healthy way [5, 16]. Crucial responsibility lies with the parents to provide the

opportunity for the disabled adolescents to experience their sexuality and to provide

guidance. For this reason, the level of information on sexuality and the accuracy of the

parents with intellectual disabled adolescents is extremely important. Studies on sexuality

with the parents of the intellectual disabled adolescents in Turkey are quite few. This study

was performed with the objective to examine the knowledge, opinions, attitudes and

concerns of the parents of adolescents with intellectual disability in relation to their

sexuality.

It has been observed in the study that the majority of the parents have not been pro-fessionally trained on the subject of sexuality. There are not that many institutions or

establishments in Turkey that provide professional education on sexuality. Therefore, it is

an expected result that majority of the parents would not have had professional education

on sexuality.

Almost half of the parents have said that they have not talked about sexuality with their

children. Isler and et al. [16] have stated that almost half of adolescents with intellectual

disability did not speak about sexuality with their families. Berman and et al. [13] have

stated that the parents of adolescents with intellectual disability are afraid to talk about

sexuality with their children. The parents are concerned that, otherwise their children’s

interest in sexuality and sexual activity could increase [13]. In addition, moral and ethicalvalues could also contribute to the parents’ fear while talking to their children on sexuality.

Sexual education provides the individual to understand his/her physical, emotional and

sexual development, to develop a positive concept of self, to develop positive behavior

towards human sexuality and moral values [3]. Research shows that compared with the

average, people with low cognitive abilities have limited knowledge of sex, pregnancy,

contraception, sexually transmitted disease (STDs), marriage, homosexuality, and sexual

interaction [6,   10,   14,   17,   18]. Isler et al. [16] have demonstrated that, a considerable

majority of adolescents with intellectual disability have some incorrect knowledge about

the characteristics of adolescent development as pertains to gender. Half of the parentsparticipating in our study have expressed that they provide sexual education to their

children. They have specified that the sexual education is related to the adolescence period

development characteristics and reproduction organs. More that half of the parents had

used pictures from magazines and brochures while providing this education. It is positive

to have the adolescents with intellectual disability informed by their parents. However,

since the subjects on whom the parents provide information is limited and since they have

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Table 2   Parents’ knowledge, opinions and attitudes regarding the sexuality of their children

Subjects   n   %

 Have you got any professional education on sexuality?

Yes 10 25.0No 30 75.0

From where and whom do you get information on sexuality?a

My wife/husband 19 47.5

Media 15 37.5

Health facilities 10 25.0

 Have you ever given any sexual education to your kid?

Yes 23 57.5

No 17 42.5

When have you started to give sexual education for your kid?Preschool – 0.0

Elementary school 9 22.5

High school 14 35.0

 In your opinion when should an individual start to have sexual education?

Preschool 5 12.5

Elementary school 22 55.0

High school 13 32.5

 Do you speak with your kid about sexuality?

We have never talked 13 32.5We speak quite easily 11 27.5

I talk to my kid when he/she asks. 10 25.0

I respond implicitly 6 15.0

With whom does your kid speak on sexuality in your house?

Mother 15 37.5

Father 12 30.0

Elder sister/brother 4 10.0

Never ask 9 22.5

On which subjects have you informed your kid?a

Development character of adolescent 23 57.5

Reproduction organ 11 27.5

Menstruation 8 20.0

Intercourse 7 17.5

Pregnancy and methods of preventing pregnancy 4 10.0

 How did you give sexual education to your kid?a

I told the sexual education using pictures from magazines and brochures 20 50.0

I told the sexual education by drawing 13 32.5

I told the sexual education without using any materials 10 25.0

I showed some materials (condom etc.) 7 17.5

 How do you describe your relationship with your kid?

Good 18 45.0

Not bad 22 55.0

Bad – 0.0

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not had professional training themselves, it is thought that the sexual education provided is

not exactly suitable for the objective. It is specified in the literature that sexual education

needs to also cover subjects like, relationship among individuals, sexual contact, preg-

nancy, family planning, STDs, sexual abuse [5, 17, 19–21]. Sexual education provided by

the parents is very crucial in protecting them from factors that can have negative impact on

the physical and emotional state of the children and attain a healthy sexual lifestyle. It is

suggested that the sexual education provided by the parents is also supplemented by

teachers and health care professionals. It is suggested to use discretion in selecting the

methods for education. It is advised to use methods such as, role playing, pictures, modelsand simple tests to create the appropriate times and to maintain repetitions. In addition,

adolescents with intellectual disability need to be encouraged to develop the behavior that

they would need in the later phases of their lives [5,  22].

While half of the parents stated in the study that sexual education should start during the

elementary school years, they have started providing sexual education to their own children

Table 2   continued

Subjects   n   %

 Does your kid share/talk to you about his/her private issues?

Yes 27 67.5

No 13 32.5

 Does your kid make masturbation?

Yes 18 45.0

No 22 55.0

What did you tell your kid about masturbation?

It is normal to make it in a convenient place 13 32.5

I ignore him/her 3 7.5

I am mad and punish them 2 5.0

I did not inform them about it 15 37.5a Multiple answers were given to this question

Table 3   Parents’ concerns regarding the sexuality of their children

Concerns   n   %

I wonder about my kid’s future, if something happen to me what can my kid do? 29 72.5

My kid wants to get married, what should I tell him/her? 19 47.5

My kid wants to have a girl friend/a boy friend, what must I do? 18 45.0How can I protect my kid from abuse? 17 42.5

Should I give sexual education to my kid? I think it can make a sensation if I give sexual

education

13 32.5

How can I take internet under control? 12 30.0

He/she wants to have a baby, I don’t know what to tell 11 27.5

Should I permit him to make masturbation? 9 22.5

Who tells about sexuality to him/her in the family? 7 17.5

He/she wants to intercourse, what should I do? 6 15.0

Multiple answers were given to this question

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during high school. Howard-Barr [15] stated that approximately two-thirds of respondents

indicated that at least some topics should be taught to educable students with mental

disability during elementary school. Almost all (96%) believed human sexuality should be

taught during middle school and high school [15]. Yet, sexuality in children is a process

that begins with birth. The questions asked by the children since early childhood onsexuality form the most important part of sexual education [5,  16]. Healthy children and

adolescents learn the behavior of their sex, social and sexual behavior by interacting and

sharing with their age group. The children with intellectual disability will experience less

of this when they are socially isolated and have less opportunity to interact with their peers.

Isler et al. [16] found that half of the girls and one-third of the boys had correct

information about masturbation and the number of responders believing that only men

masturbate was very low. Close to half of the parents participating in our study have

reported that their children do masturbate. It has been determined that all of the parents

whose children masturbate have told their children that it is all right to masturbate in

appropriate places (children’s own room and bathroom). There is an opinion that children

with intellectual disabilities generally have more sexual knowledge and display more

sexually oriented behavior compared to their peers. However, since these children do not

know when and where the sexually oriented behavior is appropriate, they need assistance

to attain this direction. In this situation, the parents, educators and health care professionals

need to provide guidance.

The parents, participating in the study, have expressed their concerns for the future in

relation to having adolescents with intellectual disability. It is certain that an institution or

a family on their own is not sufficient in approaches to individuals with disability. It is very

crucial to develop appropriate health policies based on multidisciplinary and holisticapproaches.

Conclusion

This study found that the parents of the adolescents with intellectual disability at this

location had not received any professional education on sexual development. It is very

crucial that these parents with these special children need to be informed by health pro-

fessionals. It is suggested that the number of the organizations be increased, which pro-

vides the parents of adolescents with intellectual disability the professional education onsexual issues, reduces their anxieties, and reduces the chance for misinformation.

Acknowledgments   We thank all of the participants who gave their informed consent for the study. This

study received external funding from Akdeniz University Scientific Research Project Unit.

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