Feminizing care pathways: Mixed-methods study of reproductive options, decision making, pregnancy, post-natal care and parenting amongst women with kidney disease

 

Aims: To identify the needs, experiences, and preferences of women with kidney disease in relation to their reproductive health to inform development of shared decision-making interventions. 

Design:  UK-wide mixed-methods convergent design (Sep20-Aug21). 

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 defeminisation, 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 it was more important to be a ‘good mother’ than address their health needs, which were often unmet and unrecognised. 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 feminised care pathway that includes reproductive health. Research is needed in parallel to examine the effectiveness of interventions and address inequalities.