Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth

Brownsyne Tucker Edmonds, Shelley M. Hoffman, Tatiana Laitano, Surya Sruthi Bhamidipalli, Erin Jeffries, William Fadel, Karen Kavanaugh

Research output: Contribution to journalArticle

Abstract

Background: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). Objective: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. Methods: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview—(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) “Agreed/disagreed” with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define “QOL” and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. Results: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated “Impact on Your Physical/Mental Health” (average 5.6) and IOs rated “financial Concerns” the highest (average 6.6), both groups ranked “financial Concerns” as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that “Any amount of life is better than no life at all” (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause “Too much suffering” for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase “QOL”. Although the majority described a good QOL in terms of emotional well-being (eg “loved”, “happy”, “supported”), a poor QOL was described in terms of functionality (eg “dependent” and “confined”). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. Conclusion: Our study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.

Original languageEnglish (US)
JournalPaediatric and Perinatal Epidemiology
DOIs
StateAccepted/In press - Jan 1 2019

Fingerprint

Parents
Quality of Life
Parturition
Therapeutics
Pregnant Women
Decision Making
Resuscitation Orders
Artificial Respiration
Resuscitation
Mental Health
Interviews
Exercise

Keywords

  • periviable delivery
  • quality of life
  • shared decision making
  • values clarification

ASJC Scopus subject areas

  • Epidemiology
  • Pediatrics, Perinatology, and Child Health

Cite this

Values clarification : Eliciting the values that inform and influence parents' treatment decisions for periviable birth. / Tucker Edmonds, Brownsyne; Hoffman, Shelley M.; Laitano, Tatiana; Bhamidipalli, Surya Sruthi; Jeffries, Erin; Fadel, William; Kavanaugh, Karen.

In: Paediatric and Perinatal Epidemiology, 01.01.2019.

Research output: Contribution to journalArticle

Tucker Edmonds, Brownsyne ; Hoffman, Shelley M. ; Laitano, Tatiana ; Bhamidipalli, Surya Sruthi ; Jeffries, Erin ; Fadel, William ; Kavanaugh, Karen. / Values clarification : Eliciting the values that inform and influence parents' treatment decisions for periviable birth. In: Paediatric and Perinatal Epidemiology. 2019.
@article{81b95b147b9241918f314a193a27a377,
title = "Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth",
abstract = "Background: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). Objective: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. Methods: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview—(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) “Agreed/disagreed” with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define “QOL” and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. Results: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated “Impact on Your Physical/Mental Health” (average 5.6) and IOs rated “financial Concerns” the highest (average 6.6), both groups ranked “financial Concerns” as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that “Any amount of life is better than no life at all” (pregnant women 62.1{\%}; IOs 75.0{\%}) and disagreed that resuscitation would cause “Too much suffering” for their child (pregnant women 71.4{\%}; IOs 80.0{\%}). Half were familiar with the phrase “QOL”. Although the majority described a good QOL in terms of emotional well-being (eg “loved”, “happy”, “supported”), a poor QOL was described in terms of functionality (eg “dependent” and “confined”). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. Conclusion: Our study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.",
keywords = "periviable delivery, quality of life, shared decision making, values clarification",
author = "{Tucker Edmonds}, Brownsyne and Hoffman, {Shelley M.} and Tatiana Laitano and Bhamidipalli, {Surya Sruthi} and Erin Jeffries and William Fadel and Karen Kavanaugh",
year = "2019",
month = "1",
day = "1",
doi = "10.1111/ppe.12590",
language = "English (US)",
journal = "Paediatric and Perinatal Epidemiology",
issn = "0269-5022",
publisher = "Wiley-Blackwell",

}

TY - JOUR

T1 - Values clarification

T2 - Eliciting the values that inform and influence parents' treatment decisions for periviable birth

AU - Tucker Edmonds, Brownsyne

AU - Hoffman, Shelley M.

AU - Laitano, Tatiana

AU - Bhamidipalli, Surya Sruthi

AU - Jeffries, Erin

AU - Fadel, William

AU - Kavanaugh, Karen

PY - 2019/1/1

Y1 - 2019/1/1

N2 - Background: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). Objective: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. Methods: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview—(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) “Agreed/disagreed” with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define “QOL” and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. Results: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated “Impact on Your Physical/Mental Health” (average 5.6) and IOs rated “financial Concerns” the highest (average 6.6), both groups ranked “financial Concerns” as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that “Any amount of life is better than no life at all” (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause “Too much suffering” for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase “QOL”. Although the majority described a good QOL in terms of emotional well-being (eg “loved”, “happy”, “supported”), a poor QOL was described in terms of functionality (eg “dependent” and “confined”). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. Conclusion: Our study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.

AB - Background: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). Objective: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. Methods: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview—(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) “Agreed/disagreed” with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define “QOL” and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. Results: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated “Impact on Your Physical/Mental Health” (average 5.6) and IOs rated “financial Concerns” the highest (average 6.6), both groups ranked “financial Concerns” as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that “Any amount of life is better than no life at all” (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause “Too much suffering” for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase “QOL”. Although the majority described a good QOL in terms of emotional well-being (eg “loved”, “happy”, “supported”), a poor QOL was described in terms of functionality (eg “dependent” and “confined”). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. Conclusion: Our study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.

KW - periviable delivery

KW - quality of life

KW - shared decision making

KW - values clarification

UR - http://www.scopus.com/inward/record.url?scp=85074472399&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85074472399&partnerID=8YFLogxK

U2 - 10.1111/ppe.12590

DO - 10.1111/ppe.12590

M3 - Article

C2 - 31637742

AN - SCOPUS:85074472399

JO - Paediatric and Perinatal Epidemiology

JF - Paediatric and Perinatal Epidemiology

SN - 0269-5022

ER -