Information about pre-eclampsia
Women sometimes struggled to understand and make sense of information they were given about their condition. In some cases, they felt health professionals had not communicated it clearly. During the illness, women were often in shock and overwhelmed. This made information difficult to process and sometimes women were hazy because they were on strong medications or in-and-out of consciousness. Sometimes it took a while for information to sink in. Kay struggled to accept what her doctors said to her, even when they repeated it. The kinds of information women wanted
Women often had quite limited knowledge about pre-eclampsia before they developed it themselves. Samantha X “hadn’t really given it much thought”. Although a few people had come across information about pre-eclampsia, they hadn’t thought it would be relevant.
Women and their partners wanted information on a wide variety of topics: about pre-eclampsia symptoms; birth e.g. vaginal deliveries, caesarean sections including emergency caesarean sections); breastfeeding and bonding; long-term health impacts for the mother and/or the baby; and future pregnancies. A few women we spoke to had medical backgrounds. Dominie was a midwife and Aileen a neonatal nurse; both felt that it was sometimes assumed by their doctors and midwives that they already knew what was going on, and so they weren’t given as much information or advice. Emma was a scientist and felt comfortable looking up studies about side-effects of medicines in medical journals.
How much information and when?
Some wanted a lot of information, others felt the ‘the basics’ were enough. Stephen explained: “effectively the only piece of information I needed there was the reason why you are being ill is because the baby's inside you” and that the doctors would help ‘fix’ it. Some, like Josie, wanted lots of information but others felt they had too much to take in. Others said they didn’t have enough and that gaps or partial information could be a problem. When Lyndsey was told that her baby would be coming home from SCBU (Special Care Baby Unit) “soon”, she wanted more details to manage her expectations. There were occasions when information was particularly important such as; receiving a diagnosis, admission to hospital, during labour, shortly after birth and when mothers and/or babies were discharged. Information at these times could help women understand what was going on and prepare for the next steps. Emma’s GP had forewarned her that she would probably stay in hospital until after her baby was born, giving her a chance to pack a bag to take in. When Munirah was discharged after her son was stillborn, she was given a summary sheet with key details such as the medicines she had been on and a number to call if she had any health concerns.
However, there were also examples when women had needed more information at the right time. Lyndsey wasn’t told that her baby might need to go to SCBU after the caesarean section. So she expected him to be with her when she returned from theatre and it was upsetting when he wasn’t there. When Paige was discharged, she wasn’t told about the symptoms to keep a look out for or given a leaflet. She had high blood pressure and her symptoms returned a few days later; it was only because a close family friend had warned her about this that she knew to seek help right away. Other aspects of information were also missed out: “they didn’t even give me a leaflet on c-sections; they were like-, I only know from other people in my family having c-sections that you're not allowed to drive for eight weeks”.
Some people were glad they hadn’t known more about their condition at the time. Emma thought it was for the best that she hadn’t known there was an increased risk of stillbirth until after her baby was born. Stewart thought there were some things that health professionals might withhold from women in case the stress made them worse, but he felt that “possibly the partner should be taken away and informed on a just one-to-one sort of thing… and possibly what we should be looking for [e.g. symptoms]”.
Information from health professionals
Health professionals were the main source of information. Some said their doctors, midwives and nurses were good at explaining the situation and updating them on any changes. Samantha X always knew what was happening and didn’t have to chase anyone. Many people said the medical teams performing caesarean sections were good at communicating about the procedure. Some women and partners found it helpful to meet with paediatricians before their babies were born. Claire explained, “For me, that was really important because as their mum you want to know what's going to happen”. However, others were disappointed that the health professionals they had seen were not very forthcoming with information. Hanna said the doctors didn’t tell her husband what was happening when she was very ill or answer his questions. Aileen thought it was also important that health professionals explain things sensitively to avoid unnecessarily frightening women and their partners. Janine thought her doctors tried to keep the seriousness of her health “under wraps” but remembered her mum trying not to show how worried she was. Some women had meetings with doctors at a later date to discuss what had happened and get more information. Claire asked for a meeting to review her case and answer some questions: “Could I have been diagnosed sooner? Could my baby have been born later because of this [earlier diagnosis]?”
Other women were not offered follow-up meetings, although many said they would have liked one. Tracey was sent a letter saying how well her baby was doing “but no-one ever really asked how I was, how I was coping”. Betty recommended that it be “a mandatory part of the process” to offer women who have had pre-eclampsia a debrief meeting with a health professional.
Information from websites, leaflets and books
In addition to information from doctors, many people went online or looked in books. Julie looked in some pregnancy books when she didn’t feel well before getting in touch with the hospital. Samantha X thought looking online “seems just to be the easiest way to get hold of information”. Josie used both once she had been discharged home. She also had leaflets given to her when she left hospital and she later requested her medical notes, which made her realise in retrospect how dangerous the situation had been. Julie said her online research was “like therapy” – it reassured her that she didn’t develop pre-eclampsia because of anything she had done ‘wrong’.
Some people had concerns about the reliability of online information. Kay said she would only use “proper medical websites; I never use forums because that could be anybody’s opinion”. Some said looking online or reading about pre-eclampsia made them more worried and upset. Angela referred to “the dreaded looking through Google” as “panicking, worrying” her. Stewart thought “it would be better and more helpful if it [information] came from the hospital”. Unanswered and unanswerable questions
Some questions had never been answered for women. Julie wanted clarity on questions like: “What was pre-eclampsia? Why have I had it? What’s it to do with? …Why did they give me this drug? Why did I have to have a caesarean? …I want to put the picture together so I can work forward from it”. She also had a lot of ‘what if…?’ worries. Claire said she had some questions about what happened, partly because she felt too unwell to ask them at the time when things were happening.
Several women felt that some questions weren’t answerable with the current knowledge about pre-eclampsia and its causes. Claire thought it was good that her doctors understood the limits of their knowledge and sought advice from colleagues and medical journals.