Informing Future Mothers with Kidney Disease

March 30, 2016 0 comments

Dr Shilpa Jesudason is dedicated to providing young women living with kidney disease the best guidance and support available to them when it comes to starting a family.

“Kidney disease is often seen as a problem that affects older patients, and whilst it is, there is a significant portion of our patients who are young men and women,” Dr Jesudason said.

“For those people at this stage of life who are looking forward to big life decisions, such as having children, they can feel limited because of their kidney disease. It can be really quite overwhelming.

“A lot of the work I am doing is trying to help these patients make these decisions, whether to have kids and when is the right time?”

To support these patients Dr Jesudason wanted to first understand the experiences and emotions of women currently living with kidney disease and kidney failure, dialysis or a kidney transplant. With her research collaborators, she undertook a study interviewing patients from the Royal Adelaide Hospital (RAH) and St George Hospital in Sydney.

“I really wanted to find out from these women what their experiences around pregnancy have been and what we can do as clinicians to improve their experiences and make it better for others,” she said.

“Most of the women said they found issues around motherhood very confronting. They found the decisions they were being asked to make incredibly challenging.

“There was a lot of grief when they couldn’t have children because of the risk to their health, and guilt from those who received a kidney from a donor who felt they were gambling with that very special gift.”

Touched by the responses of these women Dr Jesudason and her team published a paper ‘Perspectives on Pregnancy in Women with Chronic Kidney Disease: A Semistructured Interview Study’. Now Dr Jesudason is using study to develop an improved process of counselling which she is now implementing in her pregnancy counselling clinic held once a month.

“Whilst it’s important we tell women about the risks associated with having a baby when you have kidney disease, we have to do it in a way that doesn’t frighten and push them away from the clinical interaction,” she said.

“In this clinic I look after women with kidney disease who are already pregnant or who have developed kidney problems during their pregnancy.

“A lot of the work I do is also talking with women who have kidney disease and want to get pregnant. We’ve now developed a strategy for talking about the risks, taking into account what they are going through, their perspectives and the things we learned from the interview study in order to navigate shared decision making.”

In addition, Dr Jesudason is preparing to launch a national study looking at kidney disease in pregnancy across 300 maternity hospitals in Australia.

“Nationwide, we are trying to find all women with significant kidney disease in pregnancy, those who need dialysis or who have had a kidney transplant in pregnancy. These are the highest risk patients and we want to be able to identify and follow these women and their babies through the pregnancy,” she said.

“This will be really important because it’s going to help develop a healthy policy around these particular cases and work out how we can deliver the best health care to these women.”

Pursuing these studies has given Dr Jesudason and Kidney Specialists like her the opportunity to provide patients with the best possible health care as they navigate through their journey. Passionate about her role, Dr Jesudason couldn’t imagine doing anything else.

“It’s a real privilege to be a part of these people’s lives and see them through what are some really difficult and turbulent times.”

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