“It Gives Me, as her Caregiver, a Sense of Security.” Young People with Intellectual Disability and their Experiences with Sexuality, Menstruation, Gynecological Treatment and Contraception: A Follow-up Analysis of Parents’ and Caregivers’ Perspectives

Abstract

Background Research shows that caregivers support but also impede people with intellectual disabilities from developing intimate relationships. People with intellectual disability experience coital sex later and less often compared to adolescents without disabilities. Caregivers often request hormonal contraception from gynecologists on their behalf. Their main motives are pregnancy avoidance (either as a result of consensual sex or sexual abuse) and menstrual suppression. Method The sample included 42 primary caregivers of young people with intellectual disability aged 14 to 25. Interviews were evaluated with qualitative content analysis. Results Nine of the main caregivers assumed that sexual intercourse had taken place. Half of the carers evaluated the importance of sexuality for the young people with intellectual disability as high. The main reason for seeing a gynecologist was the prescription of hormonal contraceptives; the outcome of which was arbitrary and dependent on the individual gynecologist. The majority of young women took general hormonal contraceptives as a preventive measure or due to heavy bleeding, regardless of sexual activity. One-fifth took hormone depots as a form of long-term contraception. Discussion A trusting relationship with the gynecologist favored the compliance and well-being of the young women. The administration of hormonal contraceptives seems to be controlled by third parties. Caregivers used hormonal contraceptives to simplify the regulation of menstruation and felt relieved by it. Carers view the sexual activities of the young women more critically because they fear a pregnancy and the responsibility for a potential grandchild. The use of hormonal contraceptives made carers clearly more tolerant of sexual activity.