VOL: 98, ISSUE: 10, PAGE NO: 38
Hemmie Martin, RNLD, FPN, works as a community nurse for people with learning disabilities, Tower Hamlets, LondonWhile working as a community nurse for people with learning disabilities in Tower Hamlets, London, I became interested in the particular problems encountered by pregnant women with learning difficulties.
While working as a community nurse for people with learning disabilities in Tower Hamlets, London, I became interested in the particular problems encountered by pregnant women with learning difficulties.
Even where a woman has a mild or borderline learning disability, the complexity of pregnancy may prove beyond her comprehension. Pregnancy can seem very abstract, especially in its early stages when the baby is too small to be felt moving around or even show as a bump.
Midwives can help women with learning disabilities to understand their condition by giving them the chance to hear the foetal heartbeat. The sound of the heartbeat gives the woman something concrete to focus on.
Antenatal classes can also be a good source of information. I accompanied one woman with communication difficulties to her classes to help her to understand the sessions. By using Makaton, a sign language for people with learning disabilities, I reinforced what was being said.
The midwife running the classes also used visual material, such as videotapes and diagrams. This client enjoyed the classes, which were attended by three to four women, who, like her, had a Bengali background.
My intervention also included reinforcing the message between the antenatal classes, as people with learning disabilities may need to hear information more than once to assimilate it. I used pictures and books to help with this.
Some women with learning disabilities, however, prefer not to attend antenatal classes, as they feel they are different from other women. An example of this was a client with mild cerebral palsy. Although the woman was able to communicate without difficulty, she was concerned about her physical disability. In this instance, I borrowed a videotape from a midwife, and worked through the issues of pregnancy and birth with her at home, using additional resources, such as books. I visited her every week to ensure we had covered all areas.
Changes are gradually occurring in midwifery services. One midwife working in Tower Hamlets offers one-to-one classes for this client group, while a group of midwives in Devon work specifically with women who have learning disabilities. They assess the women in their own homes and help raise awareness with other health staff.
Misconceptions about pregnancy and birth
I also accompany clients to antenatal clinics, in instances where they don't have a carer available or they find it too daunting to go alone.
Although the midwives at the clinic guide the women around the labyrinth of rooms for different checks, some people with learning disabilities do not have the skills to follow their directions. I help facilitate the process, ensuring that hospital staff direct their questions to the woman, intervening only if she requests me to.
During my involvement with a client, I will ask her pertinent questions about pregnancy and her expectations of it. The answers can be surprising. When I asked one woman whether she knew which part of her body the baby would come out from, she responded: 'My mouth.' I was concerned about her lack of knowledge and began to wonder how many other women had similar misconceptions about pregnancy and childbirth.
Since the practice nurses were expressing similar concerns, I devised a pregnancy awareness form for use in GP surgeries by those performing pregnancy tests for women with learning disabilities.
The pregnancy awareness form
The form allows the user to ascertain whether or not the questions are pertinent and probing enough, without being too complex. It consists of a brief questionnaire that aims to provide the practitioner with information and give the woman an insight into the challenges she may have to face.
It can also help the communication and contact between the generic and the specialist community teams for people with learning disabilities (CTLD) services, as during this period of time in a woman's life, both settings offer a valuable service.
After drawing up a draft form, I sought the opinion of a doctor working in family planning. Once I had gained approval for the form, I began to use it in my work (Box 1).
One question women often find difficulty answering is: 'What does being pregnant mean to you?' I expected answers such as 'getting fat' but all the women responded with: 'Don't know.' I was reassured when one woman told me she was worried about giving birth. But she was not typical.
A springboard for support
I like to think of this form as a springboard for women with learning disabilities to obtain the support they require from the CTLD in conjunction with generic services. I anticipate that the form will be completed by the practitioner undertaking the pregnancy test who will be able to refer the woman, should this be requested, to the local CTLD for specialist input. It could also be used as the basis for care planning (Box 2).
A woman with learning disabilities may be shocked to discover she is pregnant so, once the form has been completed, she may need time to think about the support she may want. This may require the practitioner to make follow-up arrangements, either through a face-to-face appointment or, where appropriate, a telephone call, to ascertain the response.
Attending the birth
The birth itself is as frightening for women with learning disabilities as it can be for any woman, but the fear can be heightened by lack of knowledge and understanding. Pain can also be heightened through a lack of understanding about what is happening to the body during the birth.
Pain relief is of great concern to women with learning disabilities who may feel that they will not be able to cope during the birth. Again, this is an anxiety common to women in general. However, I found the client group I work with felt they had to remember all the options available, assuming they would have to cope alone during the birth.
I reassure them that the midwife is there to help them and that they will not be left to suffer unnecessarily. Visual prompting can be beneficial when asking a woman if she requires gas and air, or an epidural during labour, as she may feel unable to make sense of what is going on.
The first birth I was present at, the midwife and I worked well, both focusing on the client, yet offering different roles and perspectives. I reassured the client with use of Makaton and ensured her wishes for the birth were met as far as possible. In this instance, the client wished to have a natural labour, which she was able to have. It was a moving time, made all the better by the positive attitude of the attending midwife.
The second birth I attended was more complicated. The client had an epidural for pain relief but it was discovered some time later that she required a Caesarean section. The surgeon, without talking to her first, informed me that her mother would have to be telephoned to obtain consent for the operation. I asked him to explain to the client what was involved, as we had studied the intervention together.
I reminded him that no one could give consent for an adult with a learning disability. Once issues about consent had been clarified and the surgeon had spoken to the client, he realised she had enough knowledge to be able to give consent herself. I stayed with the client throughout her operation and talked her through it. She handled the situation well, and was overwhelmed when she saw her son for the first time.
Ideally, for the pregnancy awareness form to be more widely used, it would have to be accompanied by a brief handout. A resource section could also be included.
The pregnancy awareness form is being piloted in two GP surgeries and is reaching a limited number of women. The aim is to extend its use to all surgeries and even hospital departments, such as A&E and genitourinary clinics.