TY - JOUR

T1 - “It was classed as a nonemergency”: Women's experiences of kidney disease and preconception decision‐making, family planning, and parenting in the United Kingdom during COVID ‐19

AU - McLaughlin, Leah

AU - Noyes, Jane

AU - Neukirchinger, Barbara

AU - Williams, Denitza

AU - Phillips, Rhiannon

AU - Griffin, Sian

PY - 2024/6

Y1 - 2024/6

N2 - Objectives: To investigate the experiences of women with kidney disease, residing in the United Kingdom (UK), living through the first 18 months of the COVID‐19 pandemic with specific focus on preconception decision‐making, family planning, and parenting. Methods: We conducted a mixed‐methods study, comprising an online survey and follow‐up interviews, with UK‐resident women aged 18–50. Results: We received 431 surveys and conducted 30 interviews. Half (n = 221, 51%) of the survey respondents considered that COVID‐19 influenced the quality of communication with healthcare professionals and 68% (n = 295) felt that the pandemic disrupted their support networks. Interview participants indicated that delayed and canceled appointments caused anxiety, grief, and loss of pregnancy options. Women's perception of themselves as (good) mothers as well as their capacity to have and raise a child, meet partners, and sustain healthy relationships was negatively affected by the “clinically extremely vulnerable” label. Women's trust in their healthcare was dismantled by miscommunication and variation in lockdown rules that caused confusion and increased worry. Women reported that COVID‐19 contributed to postnatal depression, excessive concern over infant mortality, preoccupation over others following rules, and catastrophising. Conclusion: Some women in the UK with chronic kidney disease lost or missed their opportunity to have children during the pandemic. Future pandemic planners need to look more holistically and longer term at what is and is not classed as an emergency, both in how services are reconfigured and how people with chronic conditions are identified, communicated with, and treated.

AB - Objectives: To investigate the experiences of women with kidney disease, residing in the United Kingdom (UK), living through the first 18 months of the COVID‐19 pandemic with specific focus on preconception decision‐making, family planning, and parenting. Methods: We conducted a mixed‐methods study, comprising an online survey and follow‐up interviews, with UK‐resident women aged 18–50. Results: We received 431 surveys and conducted 30 interviews. Half (n = 221, 51%) of the survey respondents considered that COVID‐19 influenced the quality of communication with healthcare professionals and 68% (n = 295) felt that the pandemic disrupted their support networks. Interview participants indicated that delayed and canceled appointments caused anxiety, grief, and loss of pregnancy options. Women's perception of themselves as (good) mothers as well as their capacity to have and raise a child, meet partners, and sustain healthy relationships was negatively affected by the “clinically extremely vulnerable” label. Women's trust in their healthcare was dismantled by miscommunication and variation in lockdown rules that caused confusion and increased worry. Women reported that COVID‐19 contributed to postnatal depression, excessive concern over infant mortality, preoccupation over others following rules, and catastrophising. Conclusion: Some women in the UK with chronic kidney disease lost or missed their opportunity to have children during the pandemic. Future pandemic planners need to look more holistically and longer term at what is and is not classed as an emergency, both in how services are reconfigured and how people with chronic conditions are identified, communicated with, and treated.

KW - COVID‐19

KW - decision‐making

KW - kidney disease

KW - pandemic

KW - parenting

KW - pregnancy

KW - qualitative research

KW - reproductive health

KW - women

U2 - 10.1111/psrh.12256

DO - 10.1111/psrh.12256

M3 - Article

VL - 56

SP - 147

EP - 157

JO - Perspectives on Sexual and Reproductive Health

JF - Perspectives on Sexual and Reproductive Health

SN - 1931-2393

IS - 2

ER -