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“It tingled as if we had gone through an anthill.” Young People with Intellectual Disability and Their Experiences with Relationship, Sexuality and Contraception

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Abstract

In summary, literature shows that people with intellectual disability tend to have less and later sexual experience than persons without disability. They have limited opportunities to meet potential partners but the same human need for intimate romantic relationships. The sample included 42 people with mild to moderate intellectual disability between 14 and 25 years. Face-to-face interviews were conducted in schools and sheltered workshops. The interview guide was translated in easy to read language. The interviews were evaluated with the qualitative content analysis. Most of the respondents have had a relationship and met their partners in professional and school context. Their contacts are reduced to the encounters there. One third have had intercourse experience. Difficulty existed in the search for an undisturbed place and partner selection. A large part of women take hormonal long-acting reversible contraception. The sexual lives of young people with intellectual disability are still partly restricted due to a lack of access. More inclusive activities should be offered and provided with an appropriate retreat for togetherness. Applicable graphic informational material and sex education on sexuality, relationship and contraception is required in easy language.

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Notes

  1. Petting, referring to sexual acts between two persons without sexual intercourse, was translated to "cuddle and snuggle" in easy language in the interview guide. The meaning of the word petting was unknown to most respondents. However, many did not equate "cuddle and snuggle" with more intimate sexual acts, but rather with embracing and hugging, which could also take place in public.

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Acknowledgements

We warmly thank the young participants who took part in this study.

Funding

The study was funded by the Federal Centre for Health Education (Grant No. 4-43/4.12/14-he).

Author information

Authors and Affiliations

  1. Institute of Social Medicine, Occupational Health and Public Health, Medical Faculty, University of Leipzig, Philipp-Rosenthal-St. 55, 04103, Leipzig, Germany

    Laura Retznik, Ines Conrad & Steffi G. Riedel-Heller

  2. Faculty of Education, University of Leipzig, Dittrichring 5-7, 04109, Leipzig, Germany

    Sabine Wienholz

  3. University Hospital Münster, Schmeddingstraße 50, 48149, Munster, Germany

    Annelen Höltermann

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  1. Laura Retznik
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  2. Sabine Wienholz
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  3. Annelen Höltermann
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  4. Ines Conrad
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  5. Steffi G. Riedel-Heller
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Correspondence to Laura Retznik.

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This study was performed in line with the principles of the Declaration of Helsinki. Approval was obtained from the Ethical Review Committee of the Medical Faculty of the University of Leipzig (AZ: 015-15-26012015).

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Appendix

Appendix

The following questions were formulated regarding the topics relationships and sexuality. The questions were as follows:

  • Have you been in love? (How did it feel to be in love? Can you describe it? How often? With a boy or with a girl? Was s/he in love with you too?)

  • Do you have a boy/girlfriend at the moment? (If so: What’s his/her name? How long have you been together? If not: Would you like to be in a steady relationship? If no: Why not?)

  • Where did you meet your current boyfriend/girlfriend? (How old was s/he? Is s/he in your school/sheltered workshop too? Does s/he have a disability? If yes: What kind of disability? How often do you see him/her each week? What do you like especially about him/her? What don’t you like about him/her?)

  • How many boyfriends/girlfriends have you had? (How old was your last boyfriend/girlfriend? How long were you together? Was s/he in your school/sheltered workshop too? Did s/he have a disability? If yes: What kind of disability? How often did you see him/her each week? What did you like especially about him/her? What didn’t you like about him/her?)

  • Have you kissed a boy/girl on the mouth? (If yes: How did it feel? When did you kiss a boy/girl for the first time? Who did you kiss? Were you in a relationship with this person? Did you kiss once or more often? Did you want to kiss the boy/girl? Did this boy/girl want to kiss you too? If no: Do you want to kiss a boy/girl on the mouth? If yes: Why haven’t you kissed a boy/girl yet? If no: Why don’t you want to kiss a boy/girl?)

  • Have you cuddled and/or snuggled with a boy/girl? (Did you like it? When did you cuddle and/or snuggle with a boy/girl? When did you do it for the first time? Who did you cuddle and/or snuggle? Were you in a relationship with this boy/girl? Did you cuddle and/or snuggle once or more often? Did you want to cuddle and/or snuggle with this boy/girl? Did this boy/girl want to cuddle and/or snuggle with you? If no: Do you want to cuddle and snuggle with a boy/girl? If yes: Why haven’t you cuddled and/or snuggled with a boy/girl? If no: Why don’t you want to cuddle and snuggle with a boy/girl?)

  • Have you had sexual intercourse with a boy/girl? (If yes: When was your first sexual intercourse? With whom did you have your first sexual intercourse? Where did you have your first sexual intercourse? Did you want to have sexual intercourse with the boy/girl? Did this boy/girl want to have sexual intercourse with you? How old were you at that time? How old was s/he? Where did you meet the boy/girl? Did the boy/girl have a disability? How was your first sexual intercourse? If no: Do you want to have sexual intercourse with a boy/girl? If yes: With whom do you want to have sexual intercourse? Why haven’t you had sexual intercourse yet? If no: Why don’t you want sexual intercourse?)

  • Did you use contraception during your first sexual intercourse? (If yes: What contraception did you use? If no: Why didn’t you use contraception?)

  • Did you have sexual intercourse again (after your first sexual intercourse)? (If yes: How often have you had sexual intercourse after your first sexual intercourse? Have you always had sexual intercourse with the same boy/girl? Where did you have sexual intercourse? If no: Why have you had no sexual intercourse after your first sexual intercourse?)

  • Do you and __________ (current partner) have sexual intercourse? (If yes: Where do you have sexual intercourse? What do you like about your sexual intercourse? What don’t you like? If no: Why didn’t you have sexual intercourse yet?)

  • When you had sexual intercourse with __________ (current partner) the last time, did you use contraception? (If yes: What contraception did you use? If no: Why didn’t you use contraception?)

  • Did you choose the contraceptive? (If yes: Why did you choose this contraceptive? Do you want to take a contraceptive? If no: Who chose this contraceptive for you?)

  • When you don’t have a boyfriend/girlfriend/When your boyfriend/girlfriend isn’t around and you want to have sex what do you do? (If masturbation: Did anybody see you doing it? Did you tell anyone about it? Who? How did s/he react?)

  • Do you view porn or pornographic pictures? (If yes: Where do you view porn or pornographic pictures? If no: Why don’t you view porn or pornographic pictures?)

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Retznik, L., Wienholz, S., Höltermann, A. et al. “It tingled as if we had gone through an anthill.” Young People with Intellectual Disability and Their Experiences with Relationship, Sexuality and Contraception. Sex Disabil 39, 421–438 (2021). https://doi.org/10.1007/s11195-020-09670-z

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