From a parent’s perspective

In the autumn of 2015, we created a questionnaire for mothers of women with mental disabilities, which helped us map their experiences with gynaecological care and also helped us ascertain their needs in terms of access to information and services.

In ten questions, we asked, for example, about communication with the doctor during a regular gynaecological examination, why some of the girls and women wouldn’t let themselves be examined and what would help them in this respect, where they get their information from, if they discussed issues concerning health and sexuality with their daughter, and what kind of support they thought would be useful for them. Besides additional – identifying – questions, the respondents also had the option of expanding on their needs and experiences. Some of them took advantage of this opportunity.

We distributed the questionnaire within the framework of our local associations and at various educational events. We also posted it on the internet and on Facebook. From November 2015 to February 2016, 67 mothers of daughters with disabilities from all over the Czech Republic answered us (most were mothers from the South Moravia region and from the Olomouc region. The daughters were most frequently aged 25-34, then 35-44. Some were older or younger in a few isolated cases.

Most of the mothers know that, from the age of 15, every woman is entitled to a free preventive gynaecological examination once a year and that, from the age of 45, they are entitled to a free preventive mammogram once every two years.

However, only about half of them regularly go for gynaecological check-ups with their daughters. “My daughter has a hormonal disorder, so she takes medicine. She’s been going to a gynaecologist for check-ups since childhood. She now takes it as a given. Although, it’s still unpleasant for her, she’s able to handle it,” said one woman. Another woman was helped by a TV series: “My daughter loves the series Clinic in the Rose Garden (Ordinace v Růžové zahradě) and we used the first series as an example and she then had a rough idea of what to expect. Before a visit, we chat about what will happen during the examination.”

The others go for check-ups either intermittently or when health problems have arisen. Around a tenth of the girls and women don’t go to a gynaecological clinic at all. They are afraid of what will happen during the examination and their mothers don’t know how to prepare their daughters for it. “My daughter is terrified of doctors and she’s even scared of ambulances. I don’t know how to convince her to go for a check-up,” said one of the mothers. Very often, they don’t consider a check-up to be important if their daughter doesn’t have any health problems or does not have an active sex life. “If she has no health issues, I don’t want my daughter to be burdened with a gynaecological examination,” said another mother. For most of these mothers and daughters, gynaecological problems would become a reason to re-evaluate this situation.

One woman even told the story of her daughter, who didn’t want to go for an examination at any price: “As soon as I began speaking about a check-up with a gynaecologist, the discussion ended with her saying she wouldn’t let anyone touch her. Today I know what a big mistake it was not to make her go to the gynaecologist.” The daughter didn’t go for an examination until she herself felt lumps in her groin and was diagnosed with a tumour on her ovaries. She then underwent several operations and courses of chemotherapy, which thankfully were successful. Now, the lady admits that she should have made her daughter go for a preventive check-up a long time beforehand. You can find this story under the title “Today, I know what a big mistake it was” HERE.

Many women would therefore welcome a friendly approach from a gynaecologist as well as information materials that are comprehensible for people with varying degrees of disability. Clarification of what happens in a gynaecological examination appeared most frequently among the topics that would be useful to formulate appropriately, not just for women with mental disabilities. They would also be interested mainly in the care of a woman’s body and hygiene, the prevention of gynaecological ailments, and sexual harassment and violence – what it is and what to do if it happens to you. “Because they have no boundaries between what can and what can’t be, providing more information about what someone may be allowed to do to her and what they may not.” Curiously, the subject of relationships and sex as well as contraception options only interested around a third of respondents. Only a fifth were interested in pregnancy, childbirth, and motherhood.

Most mothers stated that, if they need to deal with issues concerning preventive health, sexuality, etc., they managed to advise them on their own. Sometimes, they also got information from a doctor or from literature and brochures. Around a fifth of the families who participated did not deal with these issues at all: “My daughter does not exhibit any interest in the opposite sex, so I don’t discuss these issues with her.” Or: “My daughter was born at a time when these matters were TABOO. After she was born, nobody told us she had been diagnosed with Down’s Syndrome. We had to dig up all the information ourselves. Sexuality wasn’t talked about back then. Even though she went to a special boarding school and there were even people there without disabilities, she never showed any interest in these matters. She viewed girls and boys as friends – sexless. But we also didn’t do anything to encourage her in this respect. Now, she’s going to be 50 years of age, her change of life is behind her, and she shows no interest in sexuality.”

One positive finding for us was that an overwhelming majority of women with disabilities and their mothers found that the doctor communicated in a comprehensible manner, he spoke to their daughter and only turned to the mother when he needed help. In general, several mothers consistently stated that: “The doctor considers me to be a mediator whom my daughter trusts.” And also: “When my daughter doesn’t understand, I translate it for her, I explain to to her so that she can understand.”

At the same time, in most cases, mothers base their choice of gynaecologist on their own personal experience. Around a fifth of them, select someone who is near to where they live; another fifth let someone they know recommend a doctor to them. Here’s another positive experience.  “My gynaecologist is very nice, friendly, and obliging. During my regular visits, we always discuss my daughter’s health. I go with my daughter for check-ups intermittently as the need arises, mainly because of her disability – she doesn’t speak, there are manifestations of autism in her behaviour. The doctor, however, is always nice to her and he adjusts his behaviour to her level of understanding. He has great patience with my daughter. He doesn’t hurry and we both feel very much at ease there.”

Filling out the questionnaires became a springboard for collecting several stories of girls and women with mental disabilities, in which they describe their experiences with friendship and love, with partnerships and sexuality, but also with pregnancy, parenthood, abortion, gynaecological illnesses, and abuse.

You can find all the stories HERE.