Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18
| Autor: | Annie Janvier, Keith J. Barrington, Barbara Farlow |
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| Rok vydání: | 2016 |
| Předmět: |
Parents
Pediatrics medicine.medical_specialty Palliative care Trisomy 13 Syndrome Longevity Psychological intervention Chromosome Disorders Trisomy Prenatal diagnosis 03 medical and health sciences 0302 clinical medicine Negatively associated Surveys and Questionnaires 030225 pediatrics Early Intervention Educational Genetics Humans Medicine 030212 general & internal medicine Precision Medicine Genetics (clinical) Male gender Response rate (survey) Chromosomes Human Pair 13 business.industry Palliative Care Infant Newborn medicine.disease Survival Rate Chromosomes Human Pair 18 business Healthcare providers Trisomy 18 Syndrome |
| Zdroj: | American Journal of Medical Genetics Part C: Seminars in Medical Genetics. 172:279-287 |
| ISSN: | 1552-4868 |
| DOI: | 10.1002/ajmg.c.31526 |
| Popis: | Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives. The participants were 332 parents who answered questions about their 272 children (87% response rate based on site visits; 67% on invitations sent). When parents were asked about their hope after the diagnosis, the main themes invoked by parents were the following: meet their child alive (80% of parents with a prenatal diagnosis), spend some time as a family (72%), bring their child home (52%), and give their child a good life (66%). Parents wanted to give them a chance, but also reported their fears were medical complexity, pain and/or life in the hospital (61%). Healthcare providers recommended comfort care at birth to all parents. Life-sustaining interventions “as for any other child” was chosen as a plan of care by 25% of parents. Of the 216 children with full trisomy, 69% were discharged home after birth and 40% lived >1 y. The presence of a prenatal diagnosis was the strongest independent factor negatively associated with longevity: 36% of children with a prenatal diagnosis lived |
| Databáze: | OpenAIRE |
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