Engaging and supporting women with Chronic Kidney Disease with pre-conception decision-making (including their experiences of COVID 19): A mixed-methods study (CKD-ENGAGE)
Pregnancy Choices with Kidney Disease
Women who have Chronic Kidney Disease (CKD) face complex decisions about becoming pregnant. Approximately 5000 women of childbearing age (18-50 years) in Wales have CKD, are on dialysis, or have a transplant.
Decisions about pregnancy are complex and emotive, and for women with CKD, pregnancies need to be carefully planned and monitored. Medications may need to be stopped or altered well in advance of pregnancy. There is a significant risk that pregnancy will lead to an irreversible decline in kidney function, a risk that rises with the baseline severity of disease. Preterm delivery and complications after delivery for mother and baby also increase with disease progression.
We know very little about these women’s knowledge of the ways CKD may affect family planning and pregnancy, their needs in terms of psychological and social support, and understanding how they weigh up the pros and cons of starting a family whilst living with CKD.
This is a UK wide mixed method (survey and interviews) study with women aged 18-50 and is open for 12 month from 01st September 2020 to 31st August 2021.
We want to better understand the key factors that influence decision making about pregnancy from women’s perspectives, such as; the impact of pregnancy on their health and of their CKD on their pregnancy, pressure from family, risk of passing on an inherited condition, miscarriages, anxiety and depression, feelings of shame and guilt, burden on relationships, and social care needs. The study also includes experiences during COVID 19 such as, lockdown, disruptions to care and support, and the influence of this on future decisions.
We are also working closely with the multi-disciplinary teams including; doctors, nurses, midwives, social workers and psychologists, who deliver care and education to women with CKD about family planning, to learn more about how they support women with their decision making.
If you are a professional and would like to be involved to support this study please get in touch. We are also seeking a wide range of patient and public representatives to support this study – if you would like to hear more please get in touch.
The study is currently OPEN to recruitment. If you would like to take part please click here. SURVEY DIRECTLINK: https://cardiff.onlinesurveys.ac.uk/ckd-engage or scan the QR code below.
Taking part involves completing an online survey around 20-25minutes. If you would like to you can share your contact details for a potential follow up interview, be kept informed as the study progresses, and to hear the results. You can also follow us on Twitter @kidneypregnancy or on our Facebook page here https://www.facebook.com/Pregnancy-choices-with-kidney-disease-106902844446942. To speak to a member of the research team directly, please email firstname.lastname@example.org or email@example.com
The information we collect will be used to help us design a ‘Shared Decision Making’ (SDM) intervention. SDM is a process where Professionals and patients work together to come to informed decisions about future treatment. Health professionals share the best available evidence in an easy to understand way. Patients are encouraged to share what matters most to them in terms of their priorities, concerns, lifestyle, personal circumstances, and preferences.
Encouraging SDM could help engage women and better support them with the complicated and emotional decisions they need to make about family planning and pregnancy.
Interim findings event
Our interim findings and wider stakeholder meeting took place on 13th April 2021 and included the sharing of interim findings, presentations from wider key stakeholders to support our understandings, planning and agreeing of next steps. The video recording and the transcript of the whole event can be found here and here