Service Delivery

Sexual behaviours and education in adolescents and young adults with Down syndrome: A grounded theory study of experiences and opinions of their mothers in Turkey.

Gokgoz et al. (2021) · Research in developmental disabilities 2021
★ The Verdict

Turkish moms feel blocked by culture and lack know-how, but short parent classes can fix it.

✓ Read this if BCBAs serving teens or adults with Down syndrome in any culturally traditional area.
✗ Skip if Clinicians only working with very young children or where sex-ed is already parent-driven.

01Research in Context

01

What this study did

Gokgoz et al. (2021) talked with Turkish mothers of young adults who have Down syndrome.

They asked how moms handle sexual education at home.

The team used open interviews and built a theory from the mothers’ own words.

02

What they found

Mothers said they feel lost. They do not know what to teach or how to start.

Many either ignore the topic or set strict rules to block any dating.

Strong shame and gender rules in Turkey make talks about sex feel unsafe.

03

How this fits with other research

Kangas et al. (2011) saw the same fear in UK mothers of youth with intellectual disability.

Ballan (2012) found parents of autistic kids also dodge sex talks, but for different reasons.

Gokgoz et al. (2022) show the same moms later grow stronger, proving they can learn with help.

Garcia Torres et al. (2024) gave Colombian autism parents four short classes and saw big gains in comfort and skill.

04

Why it matters

You can give parents a script and cut the shame. Start a small group, share lesson plans, and let moms practice answers. When parents feel ready, young adults with Down syndrome get safety skills, respect, and a better social life.

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Pick one puberty topic, make a one-page handout with picture cues, and rehearse answers with parents before next session.

02At a glance

Intervention
not applicable
Design
qualitative
Sample size
12
Population
down syndrome
Finding
not reported

03Original abstract

This study aimed to gain a deeper understanding of the experiences and opinions of mothers about sexual behaviours and sexual education of their children with DS who are AYAs in Turkey. The study utilised a classic grounded theory approach. In-depth interviews were conducted with 12 mothers. Data were analyzed by the constant comparative method. Mothers expressed that they could not address the sexual needs of their child because they did not feel they could provide sufficient care to their child. Mothers used pressure and control tactics and neglect of the sexuality to cope with their children's sexuality. Mothers described their meaning of the sexuality, fear of stigmatization and gender issues as determinant factors on the dealing with the sexuality. They stated their knowledge about sexuality is not enough to provide sexual education. Many cultural issues such as gender, meaning of the sexuality and burden of care was described as determinant factors and difficulties to providing sexual education. Therefore, educational and supportive programmes for parents should be conducted. Comprehensive, valid and individualized sexual education program also should be provided AYAs with DS.

Research in developmental disabilities, 2021 · doi:10.1016/j.ridd.2021.103907