Parental assessment of comfort in infants affected by life-limiting or terminal conditions treated with a personalized comfort care management

Emanuela Saita, Elvira Parravicini, Margherita Daho', Valentina Fenaroli

Risultato della ricerca: Contributo in libroContributo a conferenza

Abstract

Background\r\nFor some couples joyful anticipation of parenthood turns to sadness and pain when they learn that their unborn baby has a life-threatening condition. This is one of the most profound, stressful events an adult may experience and perinatal palliative care could be an alternative to termination of these pregnancies.\r\nAt Morgan Stanley Children’s Hospital of New York-Presbyterian Neonatal Comfort Care (NCC) is a medical care option for those parents who rejected abortion and decide to continue the pregnancy. Guidelines for a personalized medical plan of care focused on infant’s comfort have been developed, however evaluation of the effectiveness of this management is essential.\r\nObjective\r\nTo assess how the parents perceive the state of comfort in infants affected by life-limiting or terminal conditions and treated with personalized comfort measures.\r\nMethods\r\nObservational study of parents of 17 infants diagnosed with life-limiting or terminal\r\ncondition and treated with NCC. The parents filled in a questionnaire aimed to assess each baby’s state of comfort. An open question about how they would describe NCC with\r\nan image or a metaphor was included.\r\nResults\r\nTwenty-two questionnaires were collected and analyzed. Parents felt that their child was cared for with solicitude by the hospital staff and thought that the child was satisfied in\r\nhis/her fundamental needs. The metaphors or images for NCC shown by parents are closely related to transcendence and meaning of life.\r\nConclusion\r\nThis study, although limited by a small number of subjects, shows that parents of infants with life-limiting or terminal conditions perceive a state of overall comfort of their baby\r\nand have found this alternative fits better with their values. There is a suggestion that to hold and to take care their baby once born causes thoughts about death, grief and life’s\r\nmeaning.
Lingua originaleInglese
Titolo della pubblicazione ospiteXXX
EditoreN/A
Pagine125-135
Numero di pagine11
ISBN (stampa).
Stato di pubblicazionePubblicato - 2015

Keywords

  • child life-limiting
  • comfort care

Fingerprint

Entra nei temi di ricerca di 'Parental assessment of comfort in infants affected by life-limiting or terminal conditions treated with a personalized comfort care management'. Insieme formano una fingerprint unica.

Cita questo