American journal of kidney diseases : the official journal of the National Kidney Foundation · 2015
Perspectives on Pregnancy in Women With CKD: A Semistructured Interview Study.
СтатьяПоддержка исследования: вне правительства СШАНазвание и аннотация: Перевод в очереди
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Tong Allison, Brown Mark A, Winkelmayer Wolfgang C, Craig Jonathan C, Jesudason Shilpanjali
Аннотация
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.
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.