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Medline ® Abstract for Reference 53

of 'Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit'

53
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The experience of families with children with trisomy 13 and 18 in social networks.
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Janvier A, Farlow B, Wilfond BS
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Pediatrics. 2012 Aug;130(2):293-8. Epub 2012 Jul 23.
 
BACKGROUND: Children with trisomy 13 and trisomy 18 (T13-18) have low survival rates and survivors have significant disabilities. For these reasons, interventions are generally not recommended by providers. After a diagnosis, parents may turn to support groups for additional information.
METHODS: We surveyed parents of children with T13-18 who belong to support groups to describe their experiences and perspectives.
RESULTS: A total of 503 invitations to participate were sent and 332 questionnaires were completed (87% response rate based on site visits, 67% on invitations sent) by parents about 272 children. Parents reported being told that their child was incompatible with life (87%), would live a life of suffering (57%), would be a vegetable (50%), or would ruin their family (23%). They were also told by some providers that their child might have a short meaningful life (60%), however. Thirty percent of parents requested "full" intervention as a plan of treatment. Seventy-nine of these children with full T13-18 are still living, with a median age of 4 years. Half reported that taking care of a disabled child is/was harder than they expected. Despite their severe disabilities, 97% of parents described their child as a happy child. Parents reported these children enriched their family and their couple irrespective of the length of their lives.
CONCLUSIONS: Parents who engage with parental support groups may discover an alternative positive description about children with T13-18. Disagreements about interventions may be the result of different interpretations between families and providers about the experiences of disabled children and their quality of life.
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Department of Pediatrics and Clinical Ethics, University of Montreal, Neonatologist and Clinical Ethicist, Sainte-Justine Hospital, 3175 Chemin Côte-Sainte-Catherine, Montreal (QC), H3T 1C5 Canada. annie.janvier.hsj@ssss.gouv.qc.ca
PMID