OBJECTIVES: To assess (1) the differences in attitudes toward disabilities of 3 groups of subjects involved in neonatal care decision-making: health care workers, mothers of term infants, and parents of preterm infants, and (2) the impact of subject characteristics on these attitudes including parental education level, religion, and severity of disability. METHODS: Five hundred seventy-eight subjects were interviewed, of whom 135 were health care workers, 155 were mothers of term infants, and 288 were parents of preterm infants. We assessed between-group differences of the (1) health state ranking permutations, (2) proportion of subjects willing to save the infant at all costs, (3) pivotal risks of each group to the 5 health states comprising varying combinations of mental, physical, and social disabilities, and (4) impact of personal characteristics on decision-making. RESULTS: Most health care workers ranked the most severe disability health state as worse than death, whereas most parents of preterm infants ranked death as the worst outcome. Significantly more parents of preterm infants chose to save the infant at all costs, compared with mothers of term infants and health care workers, and the pivotal risks of the parents of preterm infants group were highest for all health states. Religious worship was associated with increased probability of saving at all costs and pivotal risks. Increased severity of neonatal complications was associated with decreased probability of saving at all costs and pivotal risks in parents of preterm infants. CONCLUSIONS: Our findings suggest that parents of preterm infants as a group were most likely to save the infant at all costs and prepared to tolerate more severe disability health states. However, personal characteristics, in particular religious belief and severity of neonatal complications, have overriding influence on these attitudes. We suggest inclusion of experienced parents of preterm infants for more effective counseling of parents in making life-and-death decisions.
OBJECTIVES: To assess (1) the differences in attitudes toward disabilities of 3 groups of subjects involved in neonatal care decision-making: health care workers, mothers of term infants, and parents of preterm infants, and (2) the impact of subject characteristics on these attitudes including parental education level, religion, and severity of disability. METHODS: Five hundred seventy-eight subjects were interviewed, of whom 135 were health care workers, 155 were mothers of term infants, and 288 were parents of preterm infants. We assessed between-group differences of the (1) health state ranking permutations, (2) proportion of subjects willing to save the infant at all costs, (3) pivotal risks of each group to the 5 health states comprising varying combinations of mental, physical, and social disabilities, and (4) impact of personal characteristics on decision-making. RESULTS: Most health care workers ranked the most severe disability health state as worse than death, whereas most parents of preterm infants ranked death as the worst outcome. Significantly more parents of preterm infants chose to save the infant at all costs, compared with mothers of term infants and health care workers, and the pivotal risks of the parents of preterm infants group were highest for all health states. Religious worship was associated with increased probability of saving at all costs and pivotal risks. Increased severity of neonatal complications was associated with decreased probability of saving at all costs and pivotal risks in parents of preterm infants. CONCLUSIONS: Our findings suggest that parents of preterm infants as a group were most likely to save the infant at all costs and prepared to tolerate more severe disability health states. However, personal characteristics, in particular religious belief and severity of neonatal complications, have overriding influence on these attitudes. We suggest inclusion of experienced parents of preterm infants for more effective counseling of parents in making life-and-death decisions.
Authors: Annie Janvier; Keith J Barrington; Khalid Aziz; Eduardo Bancalari; Daniel Batton; Carlo Bellieni; Brahim Bensouda; Carlos Blanco; Po-Yin Cheung; Felicia Cohn; Thierry Daboval; Peter Davis; Eugene Dempsey; Amélie Dupont-Thibodeau; Emanuela Ferretti; Barbara Farlow; Matteo Fontana; Etienne Fortin-Pellerin; Aviva Goldberg; Thor Willy Ruud Hansen; Marlyse Haward; Lajos Kovacs; Anie Lapointe; John Lantos; Colin Morley; Ahmed Moussa; Gabriel Musante; Sophie Nadeau; Colm Pf O'Donnell; Kristina Orfali; Antoine Payot; C Anthony Ryan; Guilherme Sant'anna; Ola D Saugstad; Sadath Sayeed; Theophil A Stokes; Eduard Verhagen Journal: Paediatr Child Health Date: 2014-01 Impact factor: 2.253
Authors: Gordon S K Yau; Jacky W Y Lee; Victor T Y Tam; Catherine C L Liu; Benjamin C Y Chu; Can Y F Yuen Journal: Int Ophthalmol Date: 2014-06-05 Impact factor: 2.031
Authors: Gabriele D'Amato; Maria F Faienza; Valentina Palladino; Francesco P Bianchi; Maria P Natale; Robert D Christensen; Paola Giordano; Antonio Del Vecchio Journal: Blood Transfus Date: 2020-10-14 Impact factor: 3.443
Authors: J C de Boer; L Gennissen; M Williams; M van Dijk; D Tibboel; I Reiss; S Naghib; J Sol Journal: J Perinatol Date: 2017-03-30 Impact factor: 2.521
Authors: Katie A Greenzang; Hasan Al-Sayegh; Clement Ma; Mehdi Najafzadeh; Eve Wittenberg; Jennifer W Mack Journal: Pediatrics Date: 2020-04-13 Impact factor: 7.124