Słowa kluczowe
ciąża
LFD
Letalna diagnoza płodu/dziecka
perinatalna opieka paliatywna
hospicjum perinatalne
wzrost potraumatyczny
LFD
Letalna diagnoza płodu/dziecka
perinatalna opieka paliatywna
hospicjum perinatalne
wzrost potraumatyczny
Jak cytować
Tataj-Puzyna, U., Szlendak, B., Pięta, L., & Ryś, M. (2024). Ciąża po prenatalnej diagnozie o letalnym rokowaniu dla płodu/dziecka (LFD) – perspektywa kobiet. Kwartalnik Naukowy Fides Et Ratio, 59(3), 35-45. https://doi.org/10.34766/fer.v59i3.1305
Język / Language
Słowa kluczowe
Abstrakt
Letalna diagnoza płodu definiuje poważne zaburzenia rozwojowe, które prowadzą do śmierci dziecka jeszcze przed narodzeniem, lub po narodzeniu. W globalnym systemie opieki zdrowotnej temat porodów martwych dzieci był pomijany, a opieka nad tą grupą rodzin zaniedbana. Stąd też doświadczenia dotyczące ciąży kobiet po prenatalnej diagnozie o letalnym rokowaniu u płodu/dziecka, nie jest dostatecznie zbadane. Jednakże w ostatniej dekadzie coraz więcej miejsca poświęca się temu zagadnieniu, a temat opieki nad rodzinami, które pomimo letalnej diagnozy chcą urodzić chore dziecko, stał się istotnym zagadnieniem zdrowia publicznego. Uwzględniając potrzeby tej grupy kobiet/rodziców, stworzono hospicja perinatalne, świadczące wielodyscyplinarną okołoporodową opiekę, dostosowaną do potrzeb tych rodzin.
Z przeprowadzanych badań wynika, że pomimo prognozowanej straty dziecka, rodzice mogą mieć pozytywne doświadczenia związane z okresem oczekiwania na narodziny i porodem letalnie chorego dziecka. Dzięki profesjonalnej, empatycznej opiece medycznej, rodzicom można zapewnić przestrzeń do doświadczenia prenatalnego rodzicielstwa, wzrost w zakresie siły osobistej, relacji z innymi i doceniania życia.
Stąd celem artykułu jest opisanie wybranych etapów/zagadnień okresu ciąży u kobiet po prenatalnej diagnozie o letalnym rokowaniu dla płodu/dziecka.
Bibliografia
Blakeley, C., Smith, D. M., Johnstone, E. D., & Wittkowski, A. (2019). Parental decision-making following a prenatal diagnosis that is lethal, life-limiting, or has long term implications for the future child and family: A meta-synthesis of qualitative literature. BMC Medical Ethics, 20(1), 56. https://doi.org/10.1186/s12910-019-0393-7
Breeze, A. C. G., Lees, C. C., Kumar, A., Missfelder-Lobos, H. H., & Murdoch, E. M. (2007). Palliative care for prenatally diagnosed lethal fetal abnormality. Archives of Disease in Childhood - Fetal and Neonatal Edition, 92(1), F56–F58. https://doi.org/10.1136/adc.2005.092122
Buczek, M. (2015). Hospicjum w łonie matki. Edukacja Etyczna, 10, 27–35.
Burden, C., Bradley, S., Storey, C., Ellis, A., Heazell, A. E. P., Downe, S., Cacciatore, J., & Siassakos, D. (2016). From grief, guilt pain and stigma to hope and pride – a systematic review and meta-analysis of mixed-method research of the psychosocial impact of stillbirth. BMC Pregnancy and Childbirth, 16(1), 9. https://doi.org/10.1186/s12884-016-0800-8
Cacciatore, J., Rådestad, I., & Frederik Frøen, J. (2008). Effects of Contact with Stillborn Babies on Maternal Anxiety and Depression. Birth, 35(4), 313–320. https://doi.org/10.1111/j.1523-536X.2008.00258.x
Coleman, P. K. (2015). Diagnosis of Fetal Anomaly and the Increased Maternal Psychological Toll Associated with Pregnancy Termination. Issues in Law & Medicine, 30(1), 3–23.
Cope, H., Garrett, M. E., Gregory, S., & Ashley-Koch, A. (2015). Pregnancy continuation and organizational religious activity following prenatal diagnosis of a lethal fetal defect are associated with improved psychological outcome: Psychological outcome following prenatal diagnosis of a lethal fetal defect. Prenatal Diagnosis, 35(8), 761–768. https://doi.org/10.1002/pd.4603
Côté-Arsenault, D., & Denney-Koelsch, E. (2011). “My Baby Is a Person”: Parents’ Experiences with Life-Threatening Fetal Diagnosis. Journal of Palliative Medicine, 14(12), 1302–1308. https://doi.org/10.1089/jpm.2011.0165
Côté-Arsenault, D., & Denney-Koelsch, E. (2016). “Have no regrets:” Parents’ experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Social Science & Medicine (1982), 154, 100–109.
Dangel, T. (2015). Hospicjum perinatalne – polski model. Informator Fundacji Warszawskie Hospicjum dla Dzieci. Fundacja Warszawskie Hospicjum Dla Dzieci, OPP, 71(1), 37–40.
Dangel, T., & Szymkiewicz-Dangel, J. (2016). Perinatal hospice—The Polish model. https://hospicjum.waw.pl/phocadownload/hospicjum-perinatalne/hospicjum-perinatalne-polski-model.pdf
Denney-Koelsch, E. M., Côté-Arsenault, D., & Jenkins Hall, W. (2016). Feeling Cared For Versus Experiencing Added Burden: Parents’ Interactions With Health-Care Providers in Pregnancy With a Lethal Fetal Diagnosis. Illness, Crisis & Loss, 26(4), 293–315. https://doi.org/10.1177/1054137316665817
Downe, S., Schmidt, E., Kingdon, C., & Heazell, A. E. P. (2013). Bereaved parents’ experience of stillbirth in UK hospitals: A qualitative interview study. BMJ Open, 3(2), e002237. https://doi.org/10.1136/bmjopen-2012-002237
Erlandsson, K., Warland, J., Cacciatore, J., & Rådestad, I. (2013). Seeing and holding a stillborn baby: Mothers’ feelings in relation to how their babies were presented to them after birth—Findings from an online questionnaire. Midwifery, 29(3), 246–250. https://doi.org/10.1016/j.midw.2012.01.007
Flenady, V. J., Middleton, P., Wallace, E. M., Morris, J., Gordon, A., Boyle, F. M., Homer, C. S., Henry, S., Brezler, L., Wojcieszek, A. M., Davies-Tuck, M., Coory, M., Callander, E., Kumar, S., Clifton, V., Leisher, S. H., Blencowe, H., Forbes, M., Sexton, J., & Ellwood, D. A. (2020). Stillbirth in Australia 1: The road to now: Two decades of stillbirth research and advocacy in Australia. Women and Birth, 33(6), 506–513. https://doi.org/10.1016/j.wombi.2020.09.005
Flenady, V., Middleton, P., Smith, G. C., Duke, W., Erwich, J. J., Khong, T. Y., Neilson, J., Ezzati, M., Koopmans, L., Ellwood, D., Fretts, R., & Frøen, J. F. (2011). Stillbirths: The way forward in high-income countries. The Lancet, 377(9778), 1703–1717. https://doi.org/10.1016/S0140-6736(11)60064-0
Fonseca, A., Nazaré, B., & Canavarro, M. C. (2011). Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly. Journal of Reproductive and Infant Psychology, 29(4), 320–333. https://doi.org/10.1080/02646838.2011.634398
Frates, M. C., Kumar, A. J., Benson, C. B., Ward, V. L., & Tempany, C. M. (2004). Fetal Anomalies: Comparison of MR Imaging and US for Diagnosis. Radiology, 232(2), 398–404. https://doi.org/10.1148/radiol.2322030504
Frøen, J. F., Cacciatore, J., McClure, E. M., Kuti, O., Jokhio, A. H., Islam, M., & Shiffman, J. (2011). Stillbirths: Why they matter. The Lancet, 377(9774), 1353–1366. https://doi.org/10.1016/S0140-6736(10)62232-5
Gruszka, M., Kudela, G., Wolny, A., Koszutski, T., & Hyla-Klekot, L. (2019). Perinatal hospice care in the opinion of nurses and midwives. Ginekologia Polska, 90(12), 702–706. https://doi.org/10.5603/GP.2019.0120
Guon, J., Wilfond, B. S., Farlow, B., Brazg, T., & Janvier, A. (2014). Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. American Journal of Medical Genetics Part A, 164(2), 308–318. https://doi.org/10.1002/ajmg.a.36298
Horning, M., & Braun, C. (2006). The lived experience of families who are told their child will die at or shortly after birth. 2006;8. J Undergraduate Nurs Scholarsh, 8. http://juns.nursing .arizona.edu/articles/fall%202006/horning.htm
Jalowska, A., Krzeszowiak, J., Stembalska, A., Szmyd, K., Zimmer, M., Jagielska, G., Raś, M., Pasławska, A., Szafrańska, A., Paluszyńska, D., Fuchs, T., Pesz, K., Sąsiadek, M., Królak-Olejnik, B., & Śmigiel, R. (2019). [Perinatal palliative care performed in obstetrics and neonatology wards and hospices for children—Own experience]. Developmental Period Medicine, 23(4), 253–262.
Jones, K., Baird, K., & Fenwick, J. (2017). Women’s experiences of labour and birth when having a termination of pregnancy for fetal abnormality in the second trimester of pregnancy: A qualitative meta-synthesis. Midwifery, 50, 42–54. https://doi.org/10.1016/j.midw.2017.03.014
Kamranpour, B., Noroozi, M., & Bahrami, M. (2019). Supportive needs of women who have experienced pregnancy termination due to fetal abnormalities: A qualitative study from the perspective of women, men and healthcare providers in Iran. BMC Public Health, 19(1), 507. https://doi.org/10.1186/s12889-019-6851-9
Kelley, M. C., & Trinidad, S. B. (2012). Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth–a qualitative analysis. BMC Pregnancy and Childbirth, 12(1), 137. https://doi.org/10.1186/1471-2393-12-137
Lathrop, A., & VandeVusse, L. (2011). Affirming Motherhood: Validation and Invalidation in Women’s Perinatal Hospice Narratives. Birth, 38(3), 256–265. https://doi.org/10.1111/j.1523-536X.2011.00478.x
Latos-Bieleńska, A., Materna-Kiryluk, A., Badura-Stronka, M., & Wiśniewska, K. (2010). Wrodzone wady rozwojowe w Polsce w latach 2003-2004. Dane z Polskiego Rejestru Wrodzonych Wad Rozwojowych. In Dane z Polskiego Rejestru Wrodzonych Wad Rozwojowych.: Vol. Wydanie II poprawione. (pp. 11–15). Ośrodek Wydawnictw Naukowych.
Lawn, J. E., Blencowe, H., Pattinson, R., Cousens, S., Kumar, R., Ibiebele, I., Gardosi, J., Day, L. T., & Stanton, C. (2011). Stillbirths: Where? When? Why? How to make the data count? The Lancet, 377(9775), 1448–1463. https://doi.org/10.1016/S0140-6736(10)62187-3
Lawn, J. E., Blencowe, H., Waiswa, P., Amouzou, A., Mathers, C., Hogan, D., Flenady, V., Frøen, J. F., Qureshi, Z. U., Calderwood, C., Shiekh, S., Jassir, F. B., You, D., McClure, E. M., Mathai, M., Cousens, S., Flenady, V., Frøen, J. F., Kinney, M. V., … Draper, E. S. (2016). Stillbirths: Rates, risk factors, and acceleration towards 2030. The Lancet, 387(10018), 587–603. https://doi.org/10.1016/S0140-6736(15)00837-5
Lotto, R., Armstrong, N., & Smith, L. K. (2016). Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly – A qualitative study of what is important to parents. Midwifery, 43, 14–20. https://doi.org/10.1016/j.midw.2016.10.003
Martín-Ancel, A., Pérez-Muñuzuri, A., González-Pacheco, N., Boix, H., Espinosa Fernández, M. G., Sánchez-Redondo, M. D., Cernada, M., & Couce, M. L. (2022). Perinatal palliative care. Anales de Pediatría (English Edition), 96(1), 60.e1-60.e7. https://doi.org/10.1016/j.anpede.2021.10.003
Marty, C. M., & Carter, B. S. (2018). Ethics and palliative care in the perinatal world. Seminars in Fetal and Neonatal Medicine, 23(1), 35–38. https://doi.org/10.1016/j.siny.2017.09.001
McKechnie, A. C., Pridham, K., & Tluczek, A. (2015). Preparing Heart and Mind for Becoming a Parent Following a Diagnosis of Fetal Anomaly. Qualitative Health Research, 25(9), 1182–1198. https://doi.org/10.1177/1049732314553852
Power, S., Meaney, S., & O’Donoghue, K. (2020). The incidence of fatal fetal anomalies associated with perinatal mortality in Ireland. Prenatal Diagnosis, 40(5), 549–556. https://doi.org/10.1002/pd.5642
Rådestad, I., Westerberg, A., Ekholm, A., Davidsson-Bremborg, A., & Erlandsson, K. (2011). Evaluation of care after stillbirth in Sweden based on mothers’ gratitude. British Journal of Midwifery, 19(10), 646–652. https://doi.org/10.12968/bjom.2011.19.10.646
Ratislavová, K. (2015). Visual and haptic contact of women with a stillborn baby. Journal of Nursing, Social Studies, Public Health and Rehabilitation, 135–140.
Rutkowska, M., & Szczepaniak, S. (2018). Postępowanie paliatywne w opiece perinatalnej, praktyka kliniczna, etyka, prawo, psychologia. PZWL.
Sandelowski, M., & Barroso, J. (2005). The Travesty of Choosing After Positive Prenatal Diagnosis. Journal of Obstetric, Gynecologic & Neonatal Nursing, 34(3), 307–318. https://doi.org/10.1177/0884217505276291
Tataj‐Puzyna, U., Baranowska, B., Szlendak, B., Szabat, M., & Węgrzynowska, M. (2023). Parental experiences of prenatal education when preparing for labor and birth of infant with a lethal diagnosis. Nursing Open, nop2.1928. https://doi.org/10.1002/nop2.1928
Tataj-Puzyna, U., Szlendak, B., Szabat, M., Krzeszowiak, J., & Sys, D. (2023). This birth is difficult but beautiful—Parents’ experience of giving birth to a baby with a lethal foetal diagnosis. Palliative Medicine in Practice, 0(0), Article 0. https://doi.org/10.5603/PMPI.a2023.0017
Tataj-Puzyna, U., Węgrzynowska, M., Ryś, M., Sys, D., Bączek, G., & Baranowska, B. (2022). “This pregnancy makes sense”: Experiences of women who have decided to continue pregnancy after lethal fetal diagnosis. Death Studies, 0(0), 1–10. https://doi.org/10.1080/07481187.2022.2038310
Warland, J., O’Leary, J., McCutcheon, H., & Williamson, V. (2011). Parenting paradox: Parenting after infant loss. Midwifery, 27(5), e163–e169. https://doi.org/10.1016/j.midw.2010.02.004
Wool, C. (2011). Systematic Review of the Literature: Parental Outcomes After Diagnosis of Fetal Anomaly. Advances in Neonatal Care, 11(3), 182–192. https://doi.org/10.1097/ANC.0b013e31821bd92d
Wyrok Trybunału Konstytucyjnego z dnia 22 października 2020 r. Sygn. Akt K 1/20. (n.d.). http://isap.sejm.gov.pl/isap.nsf/DocDetails.xsp?id=WDU20210000175
Breeze, A. C. G., Lees, C. C., Kumar, A., Missfelder-Lobos, H. H., & Murdoch, E. M. (2007). Palliative care for prenatally diagnosed lethal fetal abnormality. Archives of Disease in Childhood - Fetal and Neonatal Edition, 92(1), F56–F58. https://doi.org/10.1136/adc.2005.092122
Buczek, M. (2015). Hospicjum w łonie matki. Edukacja Etyczna, 10, 27–35.
Burden, C., Bradley, S., Storey, C., Ellis, A., Heazell, A. E. P., Downe, S., Cacciatore, J., & Siassakos, D. (2016). From grief, guilt pain and stigma to hope and pride – a systematic review and meta-analysis of mixed-method research of the psychosocial impact of stillbirth. BMC Pregnancy and Childbirth, 16(1), 9. https://doi.org/10.1186/s12884-016-0800-8
Cacciatore, J., Rådestad, I., & Frederik Frøen, J. (2008). Effects of Contact with Stillborn Babies on Maternal Anxiety and Depression. Birth, 35(4), 313–320. https://doi.org/10.1111/j.1523-536X.2008.00258.x
Coleman, P. K. (2015). Diagnosis of Fetal Anomaly and the Increased Maternal Psychological Toll Associated with Pregnancy Termination. Issues in Law & Medicine, 30(1), 3–23.
Cope, H., Garrett, M. E., Gregory, S., & Ashley-Koch, A. (2015). Pregnancy continuation and organizational religious activity following prenatal diagnosis of a lethal fetal defect are associated with improved psychological outcome: Psychological outcome following prenatal diagnosis of a lethal fetal defect. Prenatal Diagnosis, 35(8), 761–768. https://doi.org/10.1002/pd.4603
Côté-Arsenault, D., & Denney-Koelsch, E. (2011). “My Baby Is a Person”: Parents’ Experiences with Life-Threatening Fetal Diagnosis. Journal of Palliative Medicine, 14(12), 1302–1308. https://doi.org/10.1089/jpm.2011.0165
Côté-Arsenault, D., & Denney-Koelsch, E. (2016). “Have no regrets:” Parents’ experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Social Science & Medicine (1982), 154, 100–109.
Dangel, T. (2015). Hospicjum perinatalne – polski model. Informator Fundacji Warszawskie Hospicjum dla Dzieci. Fundacja Warszawskie Hospicjum Dla Dzieci, OPP, 71(1), 37–40.
Dangel, T., & Szymkiewicz-Dangel, J. (2016). Perinatal hospice—The Polish model. https://hospicjum.waw.pl/phocadownload/hospicjum-perinatalne/hospicjum-perinatalne-polski-model.pdf
Denney-Koelsch, E. M., Côté-Arsenault, D., & Jenkins Hall, W. (2016). Feeling Cared For Versus Experiencing Added Burden: Parents’ Interactions With Health-Care Providers in Pregnancy With a Lethal Fetal Diagnosis. Illness, Crisis & Loss, 26(4), 293–315. https://doi.org/10.1177/1054137316665817
Downe, S., Schmidt, E., Kingdon, C., & Heazell, A. E. P. (2013). Bereaved parents’ experience of stillbirth in UK hospitals: A qualitative interview study. BMJ Open, 3(2), e002237. https://doi.org/10.1136/bmjopen-2012-002237
Erlandsson, K., Warland, J., Cacciatore, J., & Rådestad, I. (2013). Seeing and holding a stillborn baby: Mothers’ feelings in relation to how their babies were presented to them after birth—Findings from an online questionnaire. Midwifery, 29(3), 246–250. https://doi.org/10.1016/j.midw.2012.01.007
Flenady, V. J., Middleton, P., Wallace, E. M., Morris, J., Gordon, A., Boyle, F. M., Homer, C. S., Henry, S., Brezler, L., Wojcieszek, A. M., Davies-Tuck, M., Coory, M., Callander, E., Kumar, S., Clifton, V., Leisher, S. H., Blencowe, H., Forbes, M., Sexton, J., & Ellwood, D. A. (2020). Stillbirth in Australia 1: The road to now: Two decades of stillbirth research and advocacy in Australia. Women and Birth, 33(6), 506–513. https://doi.org/10.1016/j.wombi.2020.09.005
Flenady, V., Middleton, P., Smith, G. C., Duke, W., Erwich, J. J., Khong, T. Y., Neilson, J., Ezzati, M., Koopmans, L., Ellwood, D., Fretts, R., & Frøen, J. F. (2011). Stillbirths: The way forward in high-income countries. The Lancet, 377(9778), 1703–1717. https://doi.org/10.1016/S0140-6736(11)60064-0
Fonseca, A., Nazaré, B., & Canavarro, M. C. (2011). Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly. Journal of Reproductive and Infant Psychology, 29(4), 320–333. https://doi.org/10.1080/02646838.2011.634398
Frates, M. C., Kumar, A. J., Benson, C. B., Ward, V. L., & Tempany, C. M. (2004). Fetal Anomalies: Comparison of MR Imaging and US for Diagnosis. Radiology, 232(2), 398–404. https://doi.org/10.1148/radiol.2322030504
Frøen, J. F., Cacciatore, J., McClure, E. M., Kuti, O., Jokhio, A. H., Islam, M., & Shiffman, J. (2011). Stillbirths: Why they matter. The Lancet, 377(9774), 1353–1366. https://doi.org/10.1016/S0140-6736(10)62232-5
Gruszka, M., Kudela, G., Wolny, A., Koszutski, T., & Hyla-Klekot, L. (2019). Perinatal hospice care in the opinion of nurses and midwives. Ginekologia Polska, 90(12), 702–706. https://doi.org/10.5603/GP.2019.0120
Guon, J., Wilfond, B. S., Farlow, B., Brazg, T., & Janvier, A. (2014). Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. American Journal of Medical Genetics Part A, 164(2), 308–318. https://doi.org/10.1002/ajmg.a.36298
Horning, M., & Braun, C. (2006). The lived experience of families who are told their child will die at or shortly after birth. 2006;8. J Undergraduate Nurs Scholarsh, 8. http://juns.nursing .arizona.edu/articles/fall%202006/horning.htm
Jalowska, A., Krzeszowiak, J., Stembalska, A., Szmyd, K., Zimmer, M., Jagielska, G., Raś, M., Pasławska, A., Szafrańska, A., Paluszyńska, D., Fuchs, T., Pesz, K., Sąsiadek, M., Królak-Olejnik, B., & Śmigiel, R. (2019). [Perinatal palliative care performed in obstetrics and neonatology wards and hospices for children—Own experience]. Developmental Period Medicine, 23(4), 253–262.
Jones, K., Baird, K., & Fenwick, J. (2017). Women’s experiences of labour and birth when having a termination of pregnancy for fetal abnormality in the second trimester of pregnancy: A qualitative meta-synthesis. Midwifery, 50, 42–54. https://doi.org/10.1016/j.midw.2017.03.014
Kamranpour, B., Noroozi, M., & Bahrami, M. (2019). Supportive needs of women who have experienced pregnancy termination due to fetal abnormalities: A qualitative study from the perspective of women, men and healthcare providers in Iran. BMC Public Health, 19(1), 507. https://doi.org/10.1186/s12889-019-6851-9
Kelley, M. C., & Trinidad, S. B. (2012). Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth–a qualitative analysis. BMC Pregnancy and Childbirth, 12(1), 137. https://doi.org/10.1186/1471-2393-12-137
Lathrop, A., & VandeVusse, L. (2011). Affirming Motherhood: Validation and Invalidation in Women’s Perinatal Hospice Narratives. Birth, 38(3), 256–265. https://doi.org/10.1111/j.1523-536X.2011.00478.x
Latos-Bieleńska, A., Materna-Kiryluk, A., Badura-Stronka, M., & Wiśniewska, K. (2010). Wrodzone wady rozwojowe w Polsce w latach 2003-2004. Dane z Polskiego Rejestru Wrodzonych Wad Rozwojowych. In Dane z Polskiego Rejestru Wrodzonych Wad Rozwojowych.: Vol. Wydanie II poprawione. (pp. 11–15). Ośrodek Wydawnictw Naukowych.
Lawn, J. E., Blencowe, H., Pattinson, R., Cousens, S., Kumar, R., Ibiebele, I., Gardosi, J., Day, L. T., & Stanton, C. (2011). Stillbirths: Where? When? Why? How to make the data count? The Lancet, 377(9775), 1448–1463. https://doi.org/10.1016/S0140-6736(10)62187-3
Lawn, J. E., Blencowe, H., Waiswa, P., Amouzou, A., Mathers, C., Hogan, D., Flenady, V., Frøen, J. F., Qureshi, Z. U., Calderwood, C., Shiekh, S., Jassir, F. B., You, D., McClure, E. M., Mathai, M., Cousens, S., Flenady, V., Frøen, J. F., Kinney, M. V., … Draper, E. S. (2016). Stillbirths: Rates, risk factors, and acceleration towards 2030. The Lancet, 387(10018), 587–603. https://doi.org/10.1016/S0140-6736(15)00837-5
Lotto, R., Armstrong, N., & Smith, L. K. (2016). Care provision during termination of pregnancy following diagnosis of a severe congenital anomaly – A qualitative study of what is important to parents. Midwifery, 43, 14–20. https://doi.org/10.1016/j.midw.2016.10.003
Martín-Ancel, A., Pérez-Muñuzuri, A., González-Pacheco, N., Boix, H., Espinosa Fernández, M. G., Sánchez-Redondo, M. D., Cernada, M., & Couce, M. L. (2022). Perinatal palliative care. Anales de Pediatría (English Edition), 96(1), 60.e1-60.e7. https://doi.org/10.1016/j.anpede.2021.10.003
Marty, C. M., & Carter, B. S. (2018). Ethics and palliative care in the perinatal world. Seminars in Fetal and Neonatal Medicine, 23(1), 35–38. https://doi.org/10.1016/j.siny.2017.09.001
McKechnie, A. C., Pridham, K., & Tluczek, A. (2015). Preparing Heart and Mind for Becoming a Parent Following a Diagnosis of Fetal Anomaly. Qualitative Health Research, 25(9), 1182–1198. https://doi.org/10.1177/1049732314553852
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