Background:
Women with chronic kidney disease (CKD) often have difficulty achieving pregnancy and are at increased risk for adverse pregnancy outcomes. Given the medical, ethical, and emotional complexities of pregnancy in CKD, the clinical approach should involve explicit consideration of women's values, for which there are sparse data. This study aims to describe the beliefs, values, and experiences of pregnancy in women with CKD to inform prepregnancy counseling and pregnancy care.
Study Design:
Qualitative study.
Setting & Participants:
41 women (95% response rate) aged 22 to 56 years with CKD stages 3 to 5 (n=5), receiving dialysis (n=5), or received a kidney transplant (n=31) from 2 renal units in Australia.
Methodology:
Semistructured interviews.
Analytical Approach:
Transcripts were analyzed thematically.
Results:
6 themes were identified: bodily failure (conscious of fragility, noxious self, critical timing, and suspended in limbo), devastating loss (denied motherhood, disempowered by medical catastrophizing, resolving grief, barriers to parenthood alternatives, and social jealousy), intransigent guilt (disappointing partners, fear of genetic transmission, respecting donor sacrifice, and medical judgment), rationalizing consequential risks (choosing survival, avoiding fetal harm, responding to family protectiveness, compromising health, decisional ownership, and unjustifiable gamble), strengthening resolve (hope and opportunity, medical assurance, resolute determination, and reticent hope), and reorientating focus (valuing life and gratitude in hindsight).
Limitations:
Only English-speaking women were recruited, which may limit transferability of the findings.
Conclusions:
Decisions surrounding pregnancy in the context of CKD require women to confront uncertainties about their own survival, disease progression, guilt toward their family and kidney donor, the outcomes of their offspring, and genetic transmission. Communicating the medical risks of pregnancy to women with CKD must be carefully balanced with their values of autonomy, hope, security, and family. Informed and shared decision making that addresses women's priorities as identified in this study may help contribute to improved pregnancy, health, and psychosocial outcomes in this vulnerable population.
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Kidney disease and reproductive health.
Smith P, Sarris I, Clark K, Wiles K, Bramham K
Nat Rev Nephrol. 2024; 21(2):127-143.
PMID: 39501029
DOI: 10.1038/s41581-024-00901-6.
Visual supports and informative material not to forget counselling on reproductive health in dialysis: a point of view.
Chimenti G, Magli A, Spanu G, Santagati G, Fois A, Njandjo L
J Nephrol. 2024; 37(7):1807-1812.
PMID: 39271638
DOI: 10.1007/s40620-024-02059-7.
Late pregnancy in women with renal transplants: A multidisciplinary guide.
Mallett C, Scale R, Metodiev Y, Ali A, Thomas H, Khalid U
Obstet Med. 2024; 17(2):71-76.
PMID: 38784188
PMC: 11110750.
DOI: 10.1177/1753495X231209647.
Pre-gestational counselling for women living with CKD: starting from the bright side.
Da Silva I, Orozco-Guillen A, Longhitano E, Ballarin J, Piccoli G
Clin Kidney J. 2024; 17(5):sfae084.
PMID: 38711748
PMC: 11070880.
DOI: 10.1093/ckj/sfae084.
Pregnancy and Family Planning in Women With Kidney Disease.
Eskandar J, Lucas A, Dixon A, Kendrick J
Kidney Int Rep. 2024; 9(5):1236-1243.
PMID: 38707798
PMC: 11068963.
DOI: 10.1016/j.ekir.2024.02.1438.
Patient and Partner Perspectives of Pregnancy-Related Counseling and Information Needs in Women With Kidney Disease: An Australian National Survey.
Hewawasam E, Stallard B, Orsillo A, Boag J, Green C, Heffernan L
Kidney Int Rep. 2023; 8(12):2802-2813.
PMID: 38106594
PMC: 10719650.
DOI: 10.1016/j.ekir.2023.09.030.
Pregnancy Counseling for Patients With Kidney Disease: Moving Toward a Person-Centered Approach.
Pawar N, Hendren E
Kidney Int Rep. 2023; 8(12):2504-2506.
PMID: 38106578
PMC: 10719640.
DOI: 10.1016/j.ekir.2023.10.024.
Co-design of a question prompt list about pregnancy and childbearing for women with polycystic kidney disease: an exploratory sequential mixed-methods study.
Holton S, Nelson C, Rasmussen B, Levidiotis V
BMC Pregnancy Childbirth. 2023; 23(1):852.
PMID: 38082383
PMC: 10714568.
DOI: 10.1186/s12884-023-06154-8.
Dialysis and a plant-based diet to achieve physiologic urea levels for fetal benefit: Normal pregnancy outcome despite chronic kidney disease and hypertension.
Seed E, Gilbertson E
Obstet Med. 2023; 16(4):247-249.
PMID: 38074203
PMC: 10710205.
DOI: 10.1177/1753495X221110821.
Contraceptive Use in Females With Advanced CKD: A Qualitative Study.
Shah S, Katz-Greenberg G, Gudsoorkar P, Vyas P, Barhorst S, Verma P
Kidney Med. 2023; 5(12):100738.
PMID: 38034510
PMC: 10684388.
DOI: 10.1016/j.xkme.2023.100738.
Supporting Patient-Centered Pregnancy Counseling in Nephrology Care: A Semistructured Interview Study of Patients and Nephrologists.
Oliverio A, Lewallen M, Hladunewich M, Kalpakjian C, Weber K, Hawley S
Kidney Int Rep. 2023; 8(11):2235-2242.
PMID: 38025233
PMC: 10658226.
DOI: 10.1016/j.ekir.2023.08.010.
Chronic kidney disease, female infertility, and medically assisted reproduction: a best practice position statement by the Kidney and Pregnancy Group of the Italian Society of Nephrology.
Attini R, Cabiddu G, Ciabatti F, Montersino B, Carosso A, Gernone G
J Nephrol. 2023; 36(5):1239-1255.
PMID: 37354277
PMC: 11081994.
DOI: 10.1007/s40620-023-01670-4.
Implications of Antiabortion Laws on Patients with Kidney Disease in Pregnancy.
Rizzolo K, Faucett A, Kendrick J
Clin J Am Soc Nephrol. 2023; 18(2):276-278.
PMID: 36754012
PMC: 10103201.
DOI: 10.2215/CJN.0000000000000027.
Hope Aspects of the Women's Experience after Confirmation of a High-Risk Pregnancy Condition: A Systematic Scoping Review.
Antunes M, Viana C, Charepe Z
Healthcare (Basel). 2022; 10(12).
PMID: 36554001
PMC: 9778290.
DOI: 10.3390/healthcare10122477.
Counselling, Research Gaps, and Ethical Considerations Surrounding Pregnancy in Solid Organ Transplant Recipients.
Sawinski D, Ralston S, Coscia L, Klein C, Wang E, Porret P
J Bioeth Inq. 2022; 20(1):89-99.
PMID: 36472763
DOI: 10.1007/s11673-022-10219-2.
Interventions for and experiences of shared decision-making underpinning reproductive health, family planning options and pregnancy for women with or at high risk of kidney disease: a systematic review and qualitative framework synthesis.
Laughlin L, Neukirchinger B, Noyes J
BMJ Open. 2022; 12(8):e062392.
PMID: 35940837
PMC: 9364395.
DOI: 10.1136/bmjopen-2022-062392.
Parenthood With Kidney Failure: Answering Questions Patients Ask About Pregnancy.
Jesudason S, Williamson A, Huuskes B, Hewawasam E
Kidney Int Rep. 2022; 7(7):1477-1492.
PMID: 35812283
PMC: 9263253.
DOI: 10.1016/j.ekir.2022.04.081.
Determinants of Perinatal Outcomes in Dialyzed and Transplanted Women in Australia.
Hewawasam E, Davies C, Li Z, Clayton P, Sullivan E, McDonald S
Kidney Int Rep. 2022; 7(6):1318-1331.
PMID: 35685315
PMC: 9171625.
DOI: 10.1016/j.ekir.2022.03.015.
The experience of being a mother with end stage renal disease: A qualitative study of women receiving treatment at an ambulatory dialysis unit.
Alvarez-Villarreal M, Velarde-Garcia J, Garcia-Bravo C, Carrasco-Garrido P, Jimenez-Antona C, Moro-Lopez-Menchero P
PLoS One. 2021; 16(9):e0257691.
PMID: 34570806
PMC: 8476019.
DOI: 10.1371/journal.pone.0257691.
Person centred care provision and care planning in chronic kidney disease: which outcomes matter? A systematic review and thematic synthesis of qualitative studies : Care planning in CKD: which outcomes matter?.
de Jong Y, van der Willik E, Milders J, Meuleman Y, Morton R, Dekker F
BMC Nephrol. 2021; 22(1):309.
PMID: 34517825
PMC: 8438879.
DOI: 10.1186/s12882-021-02489-6.