Kidney Research – It’s Changing Lives
For young women and men living with kidney disease, the decision to start a family can be a difficult one. What are their risks if they do decide to have children, and when is the right time?
Made a reality thanks to you, Kidney Specialist Dr Shilpa Jesudason based at the Royal Adelaide Hospital (RAH) has set forth to answer these questions with the support of a RAH Research Fund Committee Grant.
“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, living with kidney disease can leave them feeling overwhelmed. 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?”
Firstly, Dr Jesudason wanted to 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 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. Most of the women said they found issues around motherhood very confronting. 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 developing an improved process of counselling, which she is now implementing in her monthly pregnancy counselling clinic.
“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. 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 that we want to identify and follow them and their babies through the pregnancy. This will help to develop a healthy policy around these particular cases 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.
“It’s a real privilege to be a part of these people’s lives and see them through really difficult and turbulent times. Funding from the kind and generous supporters through the RAH Research Fund is crucial to help develop new studies which can ultimately become the backbone of innovative, new research programs.”