Background: Pregnancy in women with chronic kidney disease (CKD) has important medical, ethical and emotional complexities. The clinical approach should involve explicit consideration of women’s values. Data regarding patient perspectives is limited. This study aims to describe the beliefs, values, and experiences of pregnancy in women with CKD, to inform pre-pregnancy counseling and pregnancy care.
Methods: Semi-structured interviews were conducted with purposively-sampled women with advanced CKD from renal units in SA and NSW. Interviews ceased at theoretical saturation. Transcripts were analyzed thematically using HyperRESEARCH software. Study reporting reflected the Consolidated Criteria for Reporting Qualitative Health Research.
Results: We interviewed 41 women aged 22-56 years. The CKD stages were: non-dialysis-dependent (n=5 [12%]), hemodialysis (n=2 [5%]), peritoneal dialysis (n=3 [7%]), post-kidney transplant (n=31 [76%]). Twenty-four (59%) had a previous or current pregnancy, and 21 experienced at least one pregnancy complication. Six themes were identified: bodily failure (conscious of fragility, noxious self, critical timing, suspended in limbo); devastating loss (denied motherhood, disempowered by medical catastrophizing, resolving grief, barriers to parenthood alternatives, social jealousy); intransigent guilt (disappointing partners, fear of genetic transmission, respecting donor sacrifice, medical judgment); rationalizing consequential risks (choosing survival, avoiding fetal harm, responding to family protectiveness, compromising health, decisional ownership, unjustifiable gamble); strengthening resolve (hope and opportunity, medical assurance, resolute determination, reticent hope); and reorientating focus (valuing life, gratitude in hindsight).
Conclusions: Decisions surrounding pregnancy in CKD require women to confront uncertainties about survival, disease progression, guilt towards family and donors, outcomes for their children, and balancing grief with hope. Communicating the medical risks of pregnancy to women with chronic kidney disease must be carefully balanced with their values of autonomy, hope, security and family. Informed shared decision-making that addresses competing pressures and patient priorities, as identified in this study, should be incorporated into clinical practice when counseling this vulnerable population. These findings are also likely to be relevant to women with other chronic medical conditions.