Prospective parents’ perspectives on antenatal decision making for the anticipated birth of a periviable infant

Edmonds, Brownsyne Tucker; Savage, Teresa A.; Kammerer, Robert; Kilpatrick, Sarah J.; Kuppermann, Miriam; Grobman, William A.; Kavanaugh, Karen

doi:10.1080/14767058.2017.1393066

Cited by 34 publications

(36 citation statements)

References 24 publications

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“…It also speaks to potential gaps in counseling by health care providers. Understanding these gaps is an important research effort of our group as well as others [12]. We hope that the information generated by this pilot study will lead to a larger, comprehensive review of online resources available to patients facing a periviable birth.…”

Section: Discussionmentioning

confidence: 93%

“…The American College of Obstetricians and Gynecologists, the Society for Maternal Fetal Medicine, and the American Academy of Pediatrics all emphasize the need for shared decision making regarding interventions for infants born during the periviable period [21,22]. Given patients frequently access the Internet for supplemental health information when faced with medical decision making, we sought to provide data regarding the quality of online information as it pertains to periviable delivery [11,12]. Our work revealed that the overwhelming majority of websites do not address content considered essential for patient education about the difficult decisions surrounding periviable birth.…”

Section: Discussionmentioning

confidence: 99%

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Online Information About Periviable Birth: Quality Assessment

Haragan

Zuwiala

Himes

2019

JMIR Pediatr Parent

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Background Over 20,000 parents in the United States face the challenge of participating in decisions about whether to use life support for their infants born on the cusp of viability every year. Clinicians must help families grasp complex medical information about their baby’s immediate prognosis as well as the risk for significant long-term morbidity. Patients faced with this decision want supplemental information and frequently seek medical information on the Internet. Empirical evidence about the quality of websites is lacking. Objective We sought to evaluate the quality of online information available about periviable birth and treatment options for infants born at the cusp of viability. Methods We read a counseling script to 20 pregnant participants that included information typically provided by perinatal and neonatal providers when periviable birth is imminent. The women were then asked to list terms they would use to search the Internet if they wanted additional information. Using these search terms, two reviewers evaluated the content of websites obtained via a Google search. We used two metrics to assess the quality of websites. The first was the DISCERN instrument, a validated questionnaire designed to assess the quality of patient-targeted health information for treatment choices. The second metric was the Essential Content Tool (ECT), a tool designed to address key components of counseling around periviable birth as outlined by professional organizations. DISCERN scores were classified as low quality if scores were 2, fair quality if scores were 3, and high quality if scores were 4 or higher. Scores of 6 or higher on the ECT were considered high quality. Interreviewer agreement was assessed by calculated kappa statistic. Results A total of 97 websites were reviewed. Over half (57/97, 59%) were for-profit sites, news stories, or personal blogs; 28% (27/97) were government or medical sites; and 13% (13/97) were nonprofit or advocacy sites. The majority of sites scored poorly in DISCERN questions designed to assess the reliability of information presented as well as data regarding treatment choices. Only 7% (7/97) of the websites were high quality as defined by the DISCERN tool. The majority of sites did not address the essential content defined by the ECT. Importantly, only 18% of websites (17/97) indicated that there are often a number of reasonable approaches to newborn care when faced with periviable birth. Agreement was strong, with kappa ranging from .72 to .91. Conclusions Most information about periviable birth found on the Internet using common search strategies is of low quality. News stories highlighting positive outcomes are disproportionately represented. Few websites discuss comfort care or how treatment decisions impact quality of life.

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Section: Discussionmentioning

confidence: 93%

Section: Discussionmentioning

confidence: 99%

Online Information About Periviable Birth: Quality Assessment

Haragan

Zuwiala

Himes

2019

JMIR Pediatr Parent

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“…The second exercise addressed key considerations or factors that have been identified in prior literature and through our own patient‐engaged pilot work as values parents apply in addition to baby's well‐being when considering periviable management decisions. Participants received 10 index cards—seven cards each listing a consideration and three blank cards to write any considerations that were not otherwise listed: (a) “religious or spiritual beliefs”, (b) “Financial concerns”, (c) “social support”, (d) “impact on marriage or relationship”, (e) “impact on your other children”, (f) “impact on your career or work life”, and (g) “impact on your physical or mental health”.…”

Section: Methodsmentioning

confidence: 99%

“…The final exercise addressed the concept of “gist”, which strives to capture and distil individual mental representations related to their options and outcomes . Participants were asked whether they agreed or disagreed with each of the following statements: (a) “Any amount of life is better than no life at all”, (b) “A short comfortable life is better than a long painful life”, (c) “Even a poor or bad “quality of life” is better than no life at all”, (d) “Choosing not to resuscitate would feel like ‘giving up’ on my child”, (e) “Choosing resuscitation would lead to too much suffering for my child”, and (f) “There are some disabilities that I would consider to be worse than death for my child”.…”

Section: Methodsmentioning

confidence: 99%

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

Edmonds

Hoffman

Laitano

et al. 2019

Paediatric Perinatal Epid

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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 The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.

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“…Women and families must navigate this uncertainty to make time-sensitive and value-laden decisions regarding obstetrical interventions for fetal benefit and neonatal care when periviable birth is imminent. Women facing periviable birth have expressed a desire for supplemental information after provider counseling [9][10][11][12][13]. Increasingly, patients are turning to the Internet for supplemental health information.…”

Section: Introductionmentioning

confidence: 99%

Online Information About Periviable Birth: Quality Assessment (Preprint)

Haragan¹,

Zuwiala²,

Himes³

2018

Preprint

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BACKGROUND Over 20,000 parents in the United States face the challenge of participating in decisions about whether to use life support for their infants born on the cusp of viability every year. Clinicians must help families grasp complex medical information about their baby’s immediate prognosis as well as the risk for significant long-term morbidity. Patients faced with this decision want supplemental information and frequently seek medical information on the Internet. Empirical evidence about the quality of websites is lacking. OBJECTIVE We sought to evaluate the quality of online information available about periviable birth and treatment options for infants born at the cusp of viability. METHODS We read a counseling script to 20 pregnant participants that included information typically provided by perinatal and neonatal providers when periviable birth is imminent. The women were then asked to list terms they would use to search the Internet if they wanted additional information. Using these search terms, two reviewers evaluated the content of websites obtained via a Google search. We used two metrics to assess the quality of websites. The first was the DISCERN instrument, a validated questionnaire designed to assess the quality of patient-targeted health information for treatment choices. The second metric was the Essential Content Tool (ECT), a tool designed to address key components of counseling around periviable birth as outlined by professional organizations. DISCERN scores were classified as low quality if scores were 2, fair quality if scores were 3, and high quality if scores were 4 or higher. Scores of 6 or higher on the ECT were considered high quality. Interreviewer agreement was assessed by calculated kappa statistic. RESULTS A total of 97 websites were reviewed. Over half (57/97, 59%) were for-profit sites, news stories, or personal blogs; 28% (27/97) were government or medical sites; and 13% (13/97) were nonprofit or advocacy sites. The majority of sites scored poorly in DISCERN questions designed to assess the reliability of information presented as well as data regarding treatment choices. Only 7% (7/97) of the websites were high quality as defined by the DISCERN tool. The majority of sites did not address the essential content defined by the ECT. Importantly, only 18% of websites (17/97) indicated that there are often a number of reasonable approaches to newborn care when faced with periviable birth. Agreement was strong, with kappa ranging from .72 to .91. CONCLUSIONS Most information about periviable birth found on the Internet using common search strategies is of low quality. News stories highlighting positive outcomes are disproportionately represented. Few websites discuss comfort care or how treatment decisions impact quality of life.

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Prospective parents’ perspectives on antenatal decision making for the anticipated birth of a periviable infant

Abstract: Our findings underscore the importance of presenting clear information on disability and eliciting the factors that parents deem most important in making decisions about periviable birth.

Cited by 34 publications

References 24 publications

Online Information About Periviable Birth: Quality Assessment

Online Information About Periviable Birth: Quality Assessment

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

Online Information About Periviable Birth: Quality Assessment (Preprint)

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