Pregnancy choices with kidney disease

• Research type

  Research Study

• Full title

  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)

• IRAS ID

  281999

• Contact name

  Sian Griffin

• Contact email

  Sian.Griffin2@wales.nhs.uk

• Sponsor organisation

  Cardiff and Vale University Health Board

• Duration of Study in the UK

  0 years, 11 months, 31 days

• Research summary

  Research Summary

  Women who have Chronic Kidney Disease (CKD) face complex decisions about becoming pregnant. Currently, approximately 5000 women of childbearing age (18-50 years) are living with CKD in Wales. 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.

  In this study, 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. We will carry out an online survey and one-to-one interviews with women of childbearing age across Wales, who we can follow up in future research. We will work closely with the Multi-Disciplinary Teams (MDTs) across Wales, including doctors, nurses, midwives, social workers and psychologists, who deliver care and education to women with CKD about family planning, to learn about how they support women with their decision making.

  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 with patients. 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.

  Summary of Results

  Methods

  Online questionnaire (n = 431) with validated components. Purposively sampled semi-structured interviews (n = 30). Patient and public input throughout.

  Findings

  Kidney disease was associated with defeminization, negatively affecting current (sexual) relationships and perceptions of future life goals. There was little evidence that shared decision making was taking place. Unplanned pregnancies were common, sometimes influenced by poor care and support and complicated systems. Reasons for (not) wanting children varied. Complicated pregnancies and miscarriages were common. Women often felt that it was more important to be a “good mother” than to address their health needs, which were often unmet and unrecognized. Impacts of pregnancy on disease and options for alternates to pregnancy were not well understood.

  Conclusion

  The needs and reproductive priorities of women are frequently overshadowed by their kidney disease. High-quality shared decision-making interventions need to be embedded as routine in a feminized care pathway that includes reproductive health. Research is needed in parallel to examine the effectiveness of interventions and address inequalities.

  Impact

  We do not fully understand the expectations, needs, experiences and preferences of women with kidney disease for planning and starting a family or deciding not to have children.

  Women lack the knowledge, resources and opportunities to have high-quality conversations with their healthcare professionals. Decisions are highly personal and related to a number of health, social and cultural factors; individualized approaches to care are essential.

  Healthcare services need to be redesigned to ensure that women are able to make informed choices about pregnancy and alternative routes to becoming a parent.

  We also produced a systematic review of the literature, and an additional analysis of the impact of COVID on these women. All available via the below links.

  https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbcUoCAN5SevSGc3QEM-2BIE8JbZ7UXUmZjii2mi5Llmh8BGVMh9BYJAh-2Fs4JciNIKFKSY4m-2F-2Bjyo5WNo79IZo8NCM-3DtCjl_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YI2v9UJ9DZEnXdcctmc-2F-2F31PXA25Hk-2FiDUnkCv6Te8JOKl63LQmlH65NzWF9RIVyvVnVdMXznHpakFZ-2B25f6XFijGznEXp2KqiqmGPPcKEAxBIFr4oAkYXcsdiAmkYFZzAhkiMiUkVSVLyT2XcQLX4muW2myLVPvQG-2FHK6Nj-2By7wg-3D-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7C2042b6345446468714d908db3a7d5e57%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638168082341763217%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=CkpguP4FRnDMdhJ9gWQc2XEloAI4hEtBOsFbA8GwCDg%3D&reserved=0

  https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbQne05VVe0UaW9iiRd6kqFrXAAys8lsNoKpR9lOBzR-2BgDF4vn-2Fy7S6XvtFc8Xnr8oA-3D-3DHlcO_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YI2v9UJ9DZEnXdcctmc-2F-2F31U-2FC7igvlX6BjQwXIgGzXOLi7JYJ8-2FjCP511BhEJRQZzZiaLJNg-2BKcAUMLvNaj4iyhCVVbpOdyVmg9LOMhfthheSi9Zc-2BgzMRHrmKUADVEVXgcpp6DZeMTiobiEbggCDGgwhubTsvebVCL6dNyP2FQg-3D-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7C2042b6345446468714d908db3a7d5e57%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638168082341763217%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=pgKLLUnKq5qElBYmigu0Gxqy9SwrHNiwRzE1sOc%2FJgk%3D&reserved=0

  and also on our webpage here -
  https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DouFFm-2FZqrUn2jjUD5TieZDHtTq0LRciSSaKgNUDxTl6VlfiZ-2FBd1i3sjociTsB0Ac0BELsjJFy8xM6UHwVkJ06b6L4QD2Ve-2FyVKbt1Oteac-3DKDJL_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YI2v9UJ9DZEnXdcctmc-2F-2F31Xa7Hecgr6c2UUzo9waW-2FsMrwKpSoxCk72EgxLbJF1RpeV-2Bu9SCNfixTUGJRMuOs-2Bspn59nyP2WSmuWsfowOQlKHqmreQprfYB-2FcGPwANsMyxzEjp462bJez1jRKr-2BeoYkDfaSNV2fB526kD33OhmIQ-3D-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7C2042b6345446468714d908db3a7d5e57%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638168082341763217%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=OYqwcNDUkgrgNEYhXyW20%2BTlR%2Fog%2BOQ5JaVqRgqKA4o%3D&reserved=0

• REC name

  Wales REC 1

• REC reference

  20/WA/0157

• Date of REC Opinion

  6 Jun 2020

• REC opinion

  Further Information Favourable Opinion