A scoping review of parental values during prenatal decisions about treatment options after extremely premature birth

Abstract

Parents need to be involved in prenatal decisions about neonatal treatment if their baby is likely to be born extremely premature -in the so-called grey zone, which is between 22 and 26 weeks of gestation, depending on time, country and culture. [1][2][3] The two treatment options in this grey zone are intensive care and comfort care.Intensive care treatment comes with great uncertainty regarding the outcome: some infants will not survive, some will go through life with one or more disabilities, and others will grow up without any problems. 4 As decisions in the grey zone are value laden, 5 a shared decisionmaking approach is recommended. [6][7][8][9] This involves mutual recognition of the need for a decision, followed by a discussion of the treatment options with their pros and cons, as well as an exploration of the parental values to be incorporated. 10,11 This exploration, known as values clarification, will allow treatment decisions to be aligned with personal goals and circumstances. 12 When a prenatal

Attitudes and values towards decisions at the margin of viability among expectant mothers at risk for preterm birth

“…Presentation of positive cases by the physician may also be supportive. However, studies have also shown that parents should not be given false hope 14,15,18 …”

“…However, studies have also shown that parents should not be given false hope. 14,15,18 The main argument in favour of palliative care was not wanting to allow their infant to live a painful life without participation in society and with a reduced quality of life. This reasoning was also related to the decision for or against prenatal diagnostic measures at the beginning of pregnancy.…”

Smartphone-Based Video Antenatal Preterm Birth Education

“…The PPKQ includes an overall score and 8 subscale scores representing knowledge in the SMFM-, AAP-, and ACOG-recommended domains: (1) long-term outcomes, (2) variability in due date estimation, (3) general prematurity knowledge, (4) lowest GA needed for survival, (5) factors influencing preterm birth outcome, (6) treatment options, (7) short-term outcomes, and (8) advocacy. The long-term outcomes subscale of the PPKQ was selected as the primary outcome because parent knowledge of long-term outcomes is often worse than short-term outcomes despite the centrality of long-term outcomes in periviable decision-making . The PPKQ can be scored as a sum or percentage correct.…”

“…The long-term outcomes subscale of the PPKQ was selected as the primary outcome because parent knowledge of long-term outcomes is often worse than short-term outcomes 19 despite the centrality of long-term outcomes in periviable decision-making. 29 The PPKQ can be scored as a sum or percentage correct. The 25-week instrument is available (eMethods in Supplement 2 ).…”

Issue highlights

“…A review by de Boer et al 4 looks at parents' perspectives about making prenatal decisions regarding treatment for babies born at the limit of viability. It is accompanied by a perspective, where the parents of an infant born at 24 weeks of gestation share their experiences 5 after an unexpected pregnancy was discovered at 18 weeks.…”