Kidney Disease and pregnancy- what do women need for their support?
“ I didn’t know what I didn’t know, because no one asked me”
Women may have many things to think about before becoming pregnant, as well as questions which need answering while they are pregnant.
There are around five thousand women of childbearing age in Wales who have a condition that affects their kidneys. They may have additional questions about the impact of pregnancy on their kidney disease and how their kidney disease might affect their pregnancy.
Helen, her partner Craig and daughter Eleri recently achieved a dream by holidaying in LA.Helen Williams of Margam has Polycystic Kidney Disease (PKD). She became a mother following fertility treatment in 2004 when she was 38.
She says: “As a Nurse I had some understanding of PKD but also some misconceptions.”
When Helen was pregnant, she found herself acting as the conduit of information between the obstetrics team in one hospital and the Kidney Team in another.
“At the time, I felt that my thoughts, fears and wishes were not being listened to or considered. Both Consultants were experts in their respective specialities, but I wasn’t confident in my Obstetrician’s knowledge of the potentially unique issues of pregnancy and delivery and Polycystic Kidney Disease.
I later found out more about my particular renal condition through out-patient visits. I would ask questions that would occur to me and my excellent Renal Consultant would answer them thoroughly. However I was never spoken to by anyone that had the time to ask me what I understood about PKD and the implications for contraception choices, pregnancy choices, or the impact pregnancy might have on my PKD and vice versa.
With hindsight we wish we had tried to conceive earlier, when we were both younger and I was generally fitter.”
As Helen’s experiences highlight, there is currently very little understanding of how much women such as Helen already know about the choices they may face, how they reach decisions, and what information and support they need.
That’s why a new year-long all-Wales study is seeking the views and opinions of women with kidney disease through an initial online survey and selected follow up interviews.
The information collected will go to design new ‘Shared Decision Making’ (SDM) tools and processes. This will mean that health professionals and patients can work together to reach informed decisions about future treatment. Under the new processes, health professionals will share the best available evidence in an easy to understand way, while patients are encouraged to share what matters most to them in terms of their priorities, concerns, lifestyle, personal circumstances, and preferences.
The study is being led by an All Wales interdisciplinary team of researchers from the Wales Kidney Research Unit, Bangor University, Cardiff Met University, Cardiff University and Cardiff & Vale University Health board and funded by the British Renal Society and Kidney Care UK.
Dr Siân Griffin, Consultant Nephrologist at the University Hospital of Wales in Cardiff, who is leading the project says:
“We want to better understand the key factors that influence decision making about pregnancy from women’s perspectives, including their understanding and concerns about the potential impact of pregnancy on their health and of their kidney disease on their pregnancy, concerns and expectations from other family members, the risk of passing on an inherited condition, miscarriages, anxiety and depression, potential stress within relationships, and social care needs”.
Helen adds:
“I cannot emphasise how helpful it would’ve been to have been asked what my understanding, thoughts and concerns were about my disease and pregnancy choices at the time of my renal diagnosis. Even if I hadn’t been considering children at the time, I would still have welcomed the opportunity to discuss options and basic facts about how kidney disease impacts on pregnancy and vice versa. To have had someone, be it a Doctor or Specialist Nurse who had the time to listen to me, consider my wishes, inform me of my options/drugs to avoid etc and document our discussions in a shared decision making tool, would have been great. It would have removed the burden of constantly repeating history and to plead your case with every new health professional who thinks their way is the best way and thus the only way to do X Y or Z.
This is why this study is so fundamentally important. To successfully support women it is vital to understand, not only what they ‘know’ and understand about their disease and family planning and pregnancy choices, but what complexities lie behind their concerns and decision making. A woman with kidney disease, at whatever stage, who is pregnant, considering pregnancy or not, will engage with such a variety of health care professionals from differing specialities, all of whom might presume the person before them has ‘explained everything to her’ but perhaps no one has actually asked her what her understanding is, nor listened to her reasoning about anything.”
Dr Leah Mc Laughlin of Bangor University’s School of Health Sciences, who is coordinating the project added:
“We are working closely with the multi-disciplinary teams including; doctors, nurses, midwives, social workers and psychologists, who deliver care and education to women with kidney disease about family planning, to learn more about how they support women with their decision making.
We are also interested in people’s experiences during COVID 19 such as; lockdown, disruptions to care and support, and the influence of this on future decisions about having children.”
To share your response, you can find a link to the Survey on this page: http://www.kidneyresearchunit.wales/impact-case-studies.htm?id=34
Publication date: 2 September 2020