Parents' experiences of palliative care decision-making in neonatal intensive care units : An interpretative phenomenological analysis
© 2024 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica..
AIM: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn.
METHODS: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included.
RESULTS: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret.
CONCLUSION: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.
| Medienart: |
E-Artikel |
|---|
| Erscheinungsjahr: |
2024 |
|---|---|
| Erschienen: |
2024 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:113 |
|---|---|
| Enthalten in: |
Acta paediatrica (Oslo, Norway : 1992) - 113(2024), 5 vom: 25. Apr., Seite 992-998 |
| Sprache: |
Englisch |
|---|
| Beteiligte Personen: |
Saint Denny, Kelly [VerfasserIn] |
|---|
| Links: |
|---|
| Themen: |
Decision‐making |
|---|
| Anmerkungen: |
Date Completed 11.04.2024 Date Revised 11.04.2024 published: Print-Electronic Citation Status MEDLINE |
|---|
| doi: |
10.1111/apa.17109 |
|---|
| funding: |
|
|---|---|
| Förderinstitution / Projekttitel: |
|
| PPN (Katalog-ID): |
NLM367200929 |
|---|
| LEADER | 01000caa a22002652 4500 | ||
|---|---|---|---|
| 001 | NLM367200929 | ||
| 003 | DE-627 | ||
| 005 | 20240411232239.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 240117s2024 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1111/apa.17109 |2 doi | |
| 028 | 5 | 2 | |a pubmed24n1372.xml |
| 035 | |a (DE-627)NLM367200929 | ||
| 035 | |a (NLM)38229540 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rakwb | ||
| 041 | |a eng | ||
| 100 | 1 | |a Saint Denny, Kelly |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Parents' experiences of palliative care decision-making in neonatal intensive care units |b An interpretative phenomenological analysis |
| 264 | 1 | |c 2024 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a ƒaComputermedien |b c |2 rdamedia | ||
| 338 | |a ƒa Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Date Completed 11.04.2024 | ||
| 500 | |a Date Revised 11.04.2024 | ||
| 500 | |a published: Print-Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a © 2024 The Authors. Acta Paediatrica published by John Wiley & Sons Ltd on behalf of Foundation Acta Paediatrica. | ||
| 520 | |a AIM: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn | ||
| 520 | |a METHODS: Audio-recorded face-to-face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life-sustaining treatment in three neonatal intensive care units from two regions in France were included | ||
| 520 | |a RESULTS: The findings reveal two paradoxes within the meaning-making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret | ||
| 520 | |a CONCLUSION: Role ambivalence and choice ambiguity should be considered when shared decision-making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a decision‐making | |
| 650 | 4 | |a medical ethics | |
| 650 | 4 | |a neonatal intensive care units | |
| 650 | 4 | |a palliative care | |
| 650 | 4 | |a parents | |
| 650 | 4 | |a qualitative research | |
| 650 | 4 | |a withholding treatment | |
| 700 | 1 | |a Lamore, Kristopher |e verfasserin |4 aut | |
| 700 | 1 | |a Nandrino, Jean-Louis |e verfasserin |4 aut | |
| 700 | 1 | |a Rethore, Sabine |e verfasserin |4 aut | |
| 700 | 1 | |a Prieur, Charlotte |e verfasserin |4 aut | |
| 700 | 1 | |a Mur, Sebastien |e verfasserin |4 aut | |
| 700 | 1 | |a Storme, Laurent |e verfasserin |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Acta paediatrica (Oslo, Norway : 1992) |d 1994 |g 113(2024), 5 vom: 25. Apr., Seite 992-998 |w (DE-627)NLM012619973 |x 1651-2227 |7 nnns |
| 773 | 1 | 8 | |g volume:113 |g year:2024 |g number:5 |g day:25 |g month:04 |g pages:992-998 |
| 856 | 4 | 0 | |u http://dx.doi.org/10.1111/apa.17109 |3 Volltext |
| 912 | |a GBV_USEFLAG_A | ||
| 912 | |a GBV_NLM | ||
| 951 | |a AR | ||
| 952 | |d 113 |j 2024 |e 5 |b 25 |c 04 |h 992-998 | ||