The results of the interviews with the main caregivers are presented thematically. First, the experience with sexuality of the young people with intellectual disability is presented, next their experiences with menstruation and gynecological treatment and finally their experiences with contraception.
Experience with sexuality
This section deals with the following issues regarding the sexuality of young people with intellectual disability from the perspective of their main caregivers: their attitude and knowledge about the sexual activity of the young people, their subsequent reaction to it, masturbation, the sexual needs of the young people and the carers’ evaluation of the importance of sexuality for the young people.
The carer’s attitudes towards the sexual activities of the young people with intellectual disability varied. About half of the main caregivers supported them having a sexually active life while simultaneously expressing limitations in the young people's cognitive and psychological maturity. A common strategy of the parents was to shift the concept of their sexual acts and needs into the not too near future: “But that is still a long way off. Far into the future,” says the mother of Roman (17 years old). This strategy allows them to not deal with the issue and its consequences while simultaneously showing openness. The main caregivers determined kissing to be the most common and, at the same time, the most unproblematic sexual act among young people with intellectual disability. Sexual intercourse is viewed more critically in a large part because of the potential of pregnancy.
Few of the main caregivers had precise knowledge of the sexual activities of young people with intellectual disability. Often there were only guesses and vague statements that the carers expressed about the sexual activities of the young people: “At least she says she is still a virgin. So nothing happened supposedly,” according to 23 years old Astrid’s mother. “He spins quite a yarn sometimes. I can’t be sure,” said the mother of Nils (23 years old). The statements of the carers reflect the young people's desire for a romantic relationship in which kissing and cuddling are allowed. From the point of view of the carers, this corresponds most closely to the needs of the young people. Only nine of the main caregivers could safely assume that sexual intercourse had taken place. There were, in some cases, discrepancies between the statements of carers and those of young people about the experience with sexual intercourse (table 1).
Table 1: Experience with Sexual Intercourse [n (%)]
|
Young people
|
Male
|
Female
|
Carers
|
Male
|
Female
|
Yes
|
12 (29)
|
4 (17)
|
8 (44)
|
9 (22)
|
3 (13)
|
6 (33)
|
No
|
29 (71)
|
19 (83)
|
10 (56)
|
26 (63)
|
16 (70)
|
10 (56)
|
Don’t know
|
0 (0)
|
0 (0)
|
0 (0)
|
6 (15)
|
4 (17)
|
2 (11)
|
(N=41)
The main caregivers became aware of the sexual activities of the young people in different ways. In nine cases, the respondents received the information from the young people themselves. Five carers were informed from third parties, and three respondents reported having accidentally witnessed the young people having sex. Jana’s mother said that Jana (22 years old): “…asked about condoms. Then we basically knew what was going on. And we noticed it because her door was locked. And through her sister of course.”
The reactions of the carers to the young people's first sexual experiences varied. The interviewed mothers, in particular, expressed rejection and difficulties in accepting the sexual needs of the young people throughout their detachment process. The mother of Helen (20 years old) said her own reaction was “terrible.” She continued: “Let us find another supervised workshop immediately. I calmed down after that. Helen came home and wanted to talk to me in private in her room. And she said, ‘I’m so happy, I had sex.’ And I thought, ‘that’s my baby.’ Normally mothers are more excited.” Parents showed significantly more acceptance of the sexual activities of their children when certain reliable contraception methods were used.
With regard to masturbation, there was a significant gender gap. Carers of young men presented themselves as open to this issue. They judged masturbation as normal behavior and a common means of pleasurable satisfaction. They engaged in conversation with the young men, informed them about appropriate behavior and respected their privacy. Most main caregivers were aware of their masturbation habits, partly from their reports, but also from their own observation. The mother of Simon (25 years old) said, “He shouldn`t do it in public, [...] always at home. There he can do it if he feels like it. Suppressing it, that's not good. If he closes the door to his room, then I know that I shouldn't come in.” However, young women were hardly ever or not at all recognized by the carers as having a need for masturbation. The mere idea about it did not seem to exist and was in some cases also not welcomed. “I can’t imagine that,” said the mother of Ina (25 years old). The pleasure aspect of female sexuality is practically non-existent in the eyes of the carers.
There are carers who are available contact persons for the sexual needs of the young people. According to the caregivers, the young people longed for the exchange of affection and intimacy with a partner and considered starting their own family. Tanja’s mother says her daughter (20 years old), “…wants to be in a partnership. And to have normal sex. Just normal sex. Without any unusual stuff. Just a lot of affection and tenderness. But not necessarily that intercourse is center stage all the time.” Mostly, the young men express that they want to have sexual intercourse. The caregiver of Björn (16 years old) described him talking about his sexual desires like this: “He does talk about it. Pretty crude most of the time. ‘I want to fuck. Oh, I’d like to screw her.’ Like that. But there's something behind it. He is able to talk differently about it. I think he wants to have a girlfriend.”
Contrastingly, there are carers, especially mothers, who had little to say about the sexual needs and desires of young people. “Well, he is very reserved,” described Malte’s (22 years old) mother reflecting a typical lack of communication between carers and young people about this topic. The main cause for this was that the young people did not want to talk to their caregivers about sexual matters; they preferred to talk to their peers. The carers increasingly sought an exchange when measures such as contraception or an appropriate retreat for togetherness became necessary.
The carers evaluated the significance of sexuality for young people differently. Half of them determined it as high: “I’d say quite high, especially affection, sex with her boyfriend, that is quite important,” said Jana’s mother. One-third rated the significance of sexuality rather low, about which the mothers in particular showed relief: “None at the moment. I, for one, am happy about it. Doesn't have to be so early,” said Stefan’s (15 years old) mother. Only a small proportion of carers described the importance of sexuality as varying or average.
Experience with Menstruation
This section deals with the following issues regarding the experience of the young women with menstruation: their reaction to menarche and menstrual management.
The majority (10 of 18) of the young women’s menarche began between the ages of 10 and 13, on average at 12.9 years according to caregivers. A large proportion of them reacted “calmly” and “quietly” to the onset of their menarche. This response is directly related to the maternal education about the female cycle and related hygiene and organizational measures that were provided in advance. “We have prepared her in advance that all women get it once a month. And that it is quite normal, that it is not a disease. It's part of life. She was not afraid when it happened” (mother of Alice, 22). In caregivers' recollection, a smaller group of women tended to react with surprise, fear, and insecurity to the onset of menarche due to a lack of education beforehand. In some cases, mothers were equally surprised by the early onset of menarche and had failed to educate their daughters in time. However, even in these cases, the initial shock at the physical reactions due to inexperience soon turned into routine, capable behavior. Elisa's mother describes the reaction of Elisa (18 years old) like this: “She was freaked out. What's going on? So, I explained it to her. She then understood. [...] I explained it to her and managed it and talked. Well, until she finally understood.”
After the onset of their first menstrual period most caregivers informed their daughters about the need for menstrual management. The mothers tried to teach them how to handle the hygiene articles themselves as soon as possible, which the young women learned at different speeds. Influencing the learning process was, on the one hand, the severity of the mental disability and, on the other hand, the extent to which the young women were prepared for menstrual management in the lead-up to menarche. In part, the learning process was characterized by anxiety, reluctance, and initial problems. The mother of Jana (22 years old) said about this process: “I had always told her, there are tampons, there are pads in the bathroom. Use them when needed. It was a process to learn how to deal with this, because she already had trouble using the hygiene products due to her disability. She had her share of problems at the beginning. She sometimes forgot to take things with her and found herself without them. But in the meantime, she has become really good at it. She used to provide for half of the sheltered workshop.” In conclusion, most mothers were very pleased with their daughters' safe and independent handling of hygiene products, which was learned with varying levels of effort.
Experience with Gynecological Treatment
This section deals with the following issues regarding the experience of the young women with gynecological treatment: the first gynecologist visit, the reasons for seeing a gynecologist and the experience of the first gynecologist visit.
Fifteen out of 19 caregivers reported that the young women had already seen a gynecologist. The age of the first gynecological visit varied between 12 and 20 years; on the median, the young women were 15.7 years old. Half of the young women made their first visit to a gynecologist between the ages of 12 and 15, and the other half between the ages of 16 and 20. Almost all 15 caregivers said they had accompanied the young women to their first appointment with a gynecologist.
Obtaining information about possible contraceptive measures was cited as the reason for seeing a gynecologist in the majority of cases (8 out of 13). Hormonal contraception as pregnancy prevention was important to caregivers when the young women began menstruating or entered a relationship. Other reasons for the first visit to the gynecologist were medical measures due to cycle irregularities, menstrual cramps, HPV vaccination and preventive medical care. Contraceptive measures were subsequently initiated in as many as 11 of the 15 women following their first gynecologist visit.
One-third of the caregivers said the young women had a positive experience at their first gynecologist visit. The positive experiences were largely related to the empathy and respectful approach of the physicians in responding to the fears and needs of their patients. Sandra’s mother describes the gentle familiarization of her daughter (15 years old) with the gynecological examination, which took place both through conversations with her mother and through the kind gynecologist herself. She says: “The gynecologist really took an hour just for Sandra. She explained everything to her. She explained about the chair. And what happens there. And she also had a big doll there, it was lying on the chair. She showed her everything. I thought it was excellent.” One-third of the caregivers rated the experience of the visit as being rather average and in two cases as negative: “She was not too thrilled about that. She said that it hurt so much,” reported the mother of Elisa (18 years old). Three young women refused vaginal examination. In two cases the gynecologists performed an ultrasound examination through the abdominal wall as an alternative. One gynecologist prescribed the pill without a pelvic examination; another refused, even though the young woman was sexually active. Alice's mother (22 years old) described it this way, “As soon as Alice loses grasp of what they're doing to her, it's over. That's when she panics and when she gets up and leaves.” In response, the gynecologist refused to prescribe the pill because, according to Alice's mother, "she doesn't prescribe the pill off lightly, ‘I have to examine her or it will be a no go.’” The opposite experience was reported by two other mothers who were issued prescriptions without pelvic examinations. One young woman had been taking the pill for five years before her first visit to the gynecologist at age 16. According to the mother of Elisa (18 years old), “I just went to the gynecologist and said, ‘yes, so, what do you say, my little girl is disabled, 70 percent disability – I mean regarding the pill.’ First asking about the injection. ‘It’s not possible under 18,’ he said. But he immediately prescribed the pill, and she wasn’t even there.”
Experience with Contraception
This section deals with the following issues regarding the experience and attitudes with contraception of young people with intellectual disability from the point of view of their main caregivers: use of condoms, use of hormonal contraception, caregivers’ reasons for administering hormonal contraceptives, the side effects of hormonal contraception, and ethical considerations about hormonal contraceptives and sterilization.
Seventeen primary caregivers stated with certainty that the young people had used a contraceptive. Hormonal contraceptive methods are, by far, the preferred method among respondents (n=13) contrary to condoms (n=4). This may be explained by the fact that only a small number of the young men had ever been sexually active. The young men's main caregivers were uncertain about the consistent use of condoms. Unlike hormonal contraceptives, the correct use of condoms cannot be verified by third parties. The caregiver of Arne (23 years old) said: “I mean there was talk of condoms. I think he'll use them too. But he has not actually said that he will take them.” The answers of the participants showed that there was very little communication about contraception between the male young men and their caregivers.
According to the caregivers, only five of the 13 young women who used hormonal contraception had already had sexual intercourse. Three of them had only recently experienced their first sexual intercourse. The remaining seven young women were taking a hormonal contraceptive as a preventive measure or due to heavy menstrual bleeding. Two young women could not take hormonal contraceptives because of interactions with other medications. Of the women who took the contraceptive pill, two had taken it in the past. In a single case, it was suspected that the use of the pill was associated with a severe pulmonary embolism; therefore, hormonal contraceptives were not used anymore. In four cases, the caregivers preferred hormone depots such as the three-month injection or the contraceptive implant (table 2).
Table 2: Used Hormonal Contraception
|
Current
|
Prior
|
Total
|
Used hormonal contraception
|
11
|
2
|
13
|
Contraceptive pill
|
7
|
2
|
9
|
Three-month injection
|
3
|
0
|
3
|
Contraceptive implant
|
1
|
0
|
1
|
The lack of regular intake monitoring and the compatibility with other medications was experienced as relieving for the caregivers. For example, the father of Sonja (21 years old) mentioned: “The pill was usually the first thing the doctor recommended, but because of the disability and also the forgetting and not taking it the right way, we decided together with the doctor that using the three-month injection makes sense.” The use of hormonal contraception was started at a very early age in some cases. One young woman has been taking a hormone medication since age 11 and two young women since age 12. Two of them started using a hormonal contraceptive immediately after the onset of menarche (11 and 12 years). Two other young women started taking hormonal contraceptives at age 14, the remaining young women began after age 18.
Some of the caregivers cited the intention to regulate heavy menstrual bleeding as the reason for administering hormonal contraceptives. The duration, intensity and level of pain were reduced through it; in some cases, menstruation was completely suppressed. This made menstrual management much simpler and easier to plan, which provided noticeable relief and a high level of satisfaction for the main caregivers. “I am very happy with the pill because Sandra had a lot of trouble with her period. She really bled without end. Sometimes even for three weeks without a break. […] And I have to say that Sandra got used to it very quickly. And above all, I know when she gets her period. It's convenient for me.” (mother of Sandra, 15 years old). The cessation of menstruation is described unanimously as a positive effect of hormonal contraception, which simplifies the complex handling of monthly menstruation. Ina’s mother reports that Ina (25 years old) was not in charge of her own menstrual management: “She couldn’t control and change it herself.” Stopping menstruation “makes it more comfortable, you don't have the stress anymore. It takes a whole chunk out of it.”
For some, hormonal contraceptives functioned foremost as pregnancy prevention because future pregnancy could be precluded with a very high degree of certainty. The caregivers who see the main purpose of hormonal contraceptives as pregnancy prevention could be further divided into two groups. One group that acts on the basis of the current sexual and relationship related activities of the young people and one group that administers contraception in the absence of a relationship (table 3).
Table 3: Used Hormonal Contraception and Sexual Activity
|
Sexually active
|
General
|
Total
|
Used hormonal contraception
|
5
|
8
|
13
|
Contraceptive pill
|
2
|
7
|
9
|
Three-month injection
|
2
|
1
|
3
|
Contraceptive implant
|
1
|
0
|
1
|
The mother of Elisa (18 years old) described her intention like this: “And I had also gotten her the pill right after the first menstruation started, just to be safe. And they told me at school that it was for the best. ‘We can't always be running after her.’ And if some boys do something they don't notice, anything can happen. I took precautions, just to be safe.” It is this group that reports especially high levels of satisfaction with their daughters' hormonal contraception, because protecting their daughter from becoming pregnant is their top priority. Most notably, positive associations such as “safe,” “good,” “better,” “reassuring” were evoked with the administration of contraceptives. “I feel like Sonja is content with the current situation. I’m prepared for things to come, like her boyfriend she wants to bring over at the weekends. I can provide a little bit of safety. The three-month injection is a comfortable thing for her. She doesn’t have her menstruation anymore, and she doesn’t have to bother, and it gives me, as her caretaker, a sense of security.” (father of Sonja, 21 years old).
Possible side effects of hormonal medication were mostly tolerated by caregivers: “She has gained a little weight. But the doctor said that is normal. We have no problem,” said Helen’s (20 years old) mother. Caregivers criticized the administration of hormones only slightly. The mother of Tanja (20 years old) expressed doubts about the choice for the pill, but lacked realistic alternatives: “She is on the pill. [...] I think she is not ready yet. I think the pill just does a lot to a woman. And that along with her other medications. But how can we do it differently?” Only one of the caregivers made a conscious decision not to use hormonal contraception for her daughter (Tabea, 15 years old), even though she was in a relationship and her first sexual experience was imminent: “We agreed that we would just try it for a while without. Because at that time the boyfriend was not yet so relevant and you do not need to mindlessly flood in the hormones.” Tabea’s mother, on the one hand, is the only caregiver who explicitly advocates for condoms as the preferred contraceptive and supports her daughter in using hormone-free contraception for her first sexual intercourse. On the other hand, she is worried that Tabea and her boyfriend might have difficulties using your condom. As a possible cause for the suspected application difficulties, she explicitly mentioned the intellectual disabilities of the couple: “The problem is just whether they both are able to like just get it done when it comes to it.”
According to the caregivers, the majority of young women had knowledge about the fact they are taking a hormonal contraceptive. However, several statements suggest that some young women take the pill purely at their parents' directive. There is also the case where a young woman had no knowledge that she was taking a hormonal contraceptive: “She doesn't know that. It has never interested her before. I don’t believe she knows what it’s for.” (father of Sandra, 15 years old).
Despite legal prohibitions, two mothers were in favor of the possibility of sterilization surgery for their children. They justify their position with their own life situation and the consequences that a grandchild would bring with it. The mother of Jan (21 years old) described her years as the mother of a child with intellectual disability as a difficult time during which she had to give up her job for the demanding and time-consuming care of her son: “You really sacrifice yourself. Like I haven't done much for myself over the years, privately, I gotta say. You fall through the cracks.” She feared that her son is not fit to use contraception and that she “would have to sacrifice the rest of her live also to raise her grandchild.” She generally denied her son the role of a father since, in her opinion: “He can't raise a child consciously and reasonably. And Jan says he would like to have children. But, as sorry as I am, he can't have children. He shouldn't have any.” The mother of Jana (22 years old) also did not consider her daughter and her boyfriend as possibly competent parents. “She can't even figure herself out and she basically can’t read. She can't even read on a milk carton to make a bottle for a little kid. She can't read a fever thermometer. She can't take a kid to the doctor; it doesn't work like that.” Because Jana cannot take hormonal contraceptives due to her other medications, Jana's parents advocated “a general resolution of the problem” because they, too, feared taking over the parenting role for a potential grandchild. They were aware of the legal regulations regarding sterilization: “However, the law simply stands in the way. If Jana doesn't agree and says, ‘No, I want it that way,' we don't stand a chance. In theory, Jana is entitled to have children. And that's really a big worry for us. [...] If the two of them join forces, then we have a serious problem.”