TY - JOUR

T1 - Feminising care pathways: Mixed-methods study of reproductive options, decision making, pregnancy, post-natal care and parenting amongst women with kidney disease.

AU - Noyes, Jane

AU - McLaughlin, Leah

N1 - British Renal Society and Kidney Care UK. Grant Number: 19-008

PY - 2023/8

Y1 - 2023/8

N2 - AimsTo 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.DesignUK-wide mixed-methods convergent design (Sep 20–Aug 21).MethodsOnline questionnaire (n = 431) with validated components. Purposively sampled semi-structured interviews (n = 30). Patient and public input throughout.FindingsKidney 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.ConclusionThe 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.

AB - AimsTo 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.DesignUK-wide mixed-methods convergent design (Sep 20–Aug 21).MethodsOnline questionnaire (n = 431) with validated components. Purposively sampled semi-structured interviews (n = 30). Patient and public input throughout.FindingsKidney 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.ConclusionThe 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.

KW - kidney disease

KW - mixed-methods

KW - nursing

KW - parenting

KW - pregnancy

KW - qualitative

KW - shared decision making

KW - survey

KW - women

M3 - Article

VL - 79

SP - 3127

EP - 3146

JO - Journal of Advanced Nursing

JF - Journal of Advanced Nursing

SN - 0309-2402

IS - 8

ER -