Sex Disabil (2009) 27:229237

DOI 10.1007/s11195-009-9130-3
ORIGINAL PAPER

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 disabilities. Forty parents who have children with intellectual disabilities formed this studys
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 any
professional education on sexuality and 32.5% never talked on sexuality with their children. 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
Turkey

Sexuality
Parents
Adolescent
Intellectual disability

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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Sex Disabil (2009) 27:229237

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, sexuality 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 [38]. 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 disabilities 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 childrens 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 with
disabilities 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 individuals 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
intellectual disability?
2. What are the parents opinions about the sexuality of their child with
disability?
3. What are the parents attitudes about the sexuality of their child with
disability?
4. What are the parents concerns regarding the sexuality of their child with
disability?

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child with
intellectual
intellectual
intellectual

Sex Disabil (2009) 27:229237

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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
studys 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 the
researchers 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 childrens 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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Table 1 Parents socio-demographic characteristics

Sex Disabil (2009) 27:229237

Characteristics

Parents role
Mother

35

87.5

Father

12.5

3439

13

32.5

4049

20

50.0

5069

17.5

Elementary

28

70.0

High school

20.0

University

10.0

Yes

16

40.0

No

24

60.0

Parents age

Parents level of education

Working

Gender of children
Girl

11

27.5

Boy

29

72.5

1518

31

77.5

1921

22.5

12

32

80.0

C3

20.0

Age of children

Number of children

Type of family
Nucleus family

37

92.5

Large family

2.5

Interrupted family

5.0

Income of family
Income \ outlay

18

45.0

Income = outlay

20

50.0

Income [ outlay
Total

5.0

40

100.0

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

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233

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 kids future, if something
happens to me what can my kid do? 47.5% said My kid wants to get married, what should
I 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 professionally 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 childrens
interest in sexuality and sexual activity could increase [13]. In addition, moral and ethical
values 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 parents
participating 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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Sex Disabil (2009) 27:229237

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

Yes

10

25.0

No

30

75.0

Have you got any professional education on sexuality?

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

Yes

23

57.5

No

17

42.5

Have you ever given any sexual education to your kid?

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

0.0

Elementary school

22.5

14

35.0

12.5

High school
In your opinion when should an individual start to have sexual education?
Preschool
Elementary school

22

55.0

High school

13

32.5

We have never talked

13

32.5

We speak quite easily

11

27.5

I talk to my kid when he/she asks.

10

25.0

15.0

Mother

15

37.5

Father

12

30.0

Do you speak with your kid about sexuality?

I respond implicitly
With whom does your kid speak on sexuality in your house?

Elder sister/brother

10.0

Never ask

22.5

Development character of adolescent

23

57.5

Reproduction organ

11

27.5

Menstruation

20.0

Intercourse

17.5

Pregnancy and methods of preventing pregnancy

10.0

On which subjects have you informed your kid?a

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

17.5

Good

18

45.0

Not bad

22

55.0

0.0

I showed some materials (condom etc.)

How do you describe your relationship with your kid?

Bad

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Table 2 continued
Subjects

Yes

27

67.5

No

13

32.5

Yes

18

45.0

No

22

55.0

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

Does your kid make masturbation?

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

7.5

I am mad and punish them

5.0

15

37.5

I did not inform them about it

a

Multiple answers were given to this question

Table 3 Parents concerns regarding the sexuality of their children

Concerns

I wonder about my kids 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 45.0

How 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 dont 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

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, pregnancy, family planning, STDs, sexual abuse [5, 17, 1921]. 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, models
and 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

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Sex Disabil (2009) 27:229237

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 on
sexuality 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 (childrens 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 holistic
approaches.

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 professionals. It is suggested that the number of the organizations be increased, which provides the parents of adolescents with intellectual disability the professional education on
sexual 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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