The Experience of Families With Children With Trisomy 13 and 18 in Social Networks
| Autor: | Annie Janvier, Benjamin S. Wilfond, Barbara Farlow |
|---|---|
| Rok vydání: | 2012 |
| Předmět: |
Male
Parents Pediatrics medicine.medical_specialty Trisomy 13 Syndrome Palliative care Resuscitation Psychological intervention Chromosome Disorders Trisomy Quality of life (healthcare) Cost of Illness Pregnancy Professional-Family Relations Surveys and Questionnaires Intervention (counseling) medicine Humans Child Response rate (survey) Internet Chromosomes Human Pair 13 business.industry Infant Newborn Infant Prognosis medicine.disease Disabled Children Survival Rate Self-Help Groups Phenotype Caregivers Child Preschool Family medicine Pediatrics Perinatology and Child Health Quality of Life Female Chromosomes Human Pair 18 business Patau's syndrome |
| Zdroj: | Pediatrics. 130:293-298 |
| ISSN: | 1098-4275 0031-4005 |
| DOI: | 10.1542/peds.2012-0151 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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