Social Networks Raise Expectations of Trisomy 13-18 Parents
Social Networks Raise Expectations of Trisomy 13-18 Parents
July 23, 2012 — Parents of children with trisomy 13 or trisomy 18 (T13-18) who seek out social networks have experiences that differ profoundly from the bleak picture painted by many clinicians, a new study shows.
T13-18 is associated with severe neurodevelopmental disabilities, the authors explain. For children with full T13-18, survival rates beyond 1 year range from 6% to 12%. The American Academy of Pediatrics recommends against resuscitation for these patients, and parents who make choices incongruent with these recommendations often report feeling unsupported and misunderstood by their physicians.
"Parents who become involved in social networks are likely to gain knowledge of a diverse range of choices and outcomes," the authors write in an article published online July 23 and in the August issue of Pediatrics. The researchers surveyed participants in social networks for parents of children with T13-18 in the hopes of facilitating communication between parents and clinicians.
The authors were led by Annie Janvier, MD, PhD, from the University of Montreal and the Clinical Ethics Sainte-Justine Hospital in Montreal, Canada. Through email, they invited 503 parents from 18 English-language Web sites and Facebook groups dedicated to T13-18 to participate in the survey. They received eligible responses from 74 fathers and 258 mothers, representing 272 children. Of those children, 216 had full T13-18 (parents of children with mosaicism and other structural variations involving chromosomes 13 and 18 [variants] were also included).
Of the 216 children with full T13-18, 86 (40%) lived longer than 1 year, 45 (21%) lived longer than 5 years, and 26 (12%) lived longer than 10 years. Similar patterns were seen for children with mosaicism and variants. Eighty-nine percent of the parents of the 187 children who died reported that the overall experience of their child's life was positive. However, 37% of the parents who chose clinical interventions for their children reported feeling judged. Other negative experiences included being told that their child's condition was incompatible with life (reported by 87% of all parents in the study), that the child would live a life of suffering (57%), that the child would be a vegetable or have a meaningless life (50% for each), or that the child would ruin the parents' marriage or the family (23% for each).
The most common complaint was that clinicians often did not see the baby as being unique or having value. Some parents reported that the healthcare provider never asked the baby's name and would refer to the baby as "an 'it', a 'that,' a 'vegetable', or 'a T13 or T18,' " the authors write. "[P]arents reported appreciating the following from healthcare providers: referring to the child by name (even if unborn), offering to take pictures (in and ex utero), referring to other families or web sites, and describing not only those organs that had malformations but also those that did not have malformations."
The authors note that this cohort is not a representative sample: the 1-year survival rate of babies with full T13-18 is higher than that reported in other population studies, and the mothers were older and better educated than average for their age groups. They hypothesized that social networks are more likely to be used by parents whose children survive longer. They also note that the study does not include data on parents who chose to terminate the pregnancy or who experienced fetal loss.
Still, "almost all parents reported a positive view of family life and the quality of life of their child with T13-18," they write.
"Parents of children newly diagnosed with T13-18 who become integrated with social networks may acquire views, hopes, and expectations that are incongruous with those held by some of the clinicians they will encounter.... When parents request medical interventions, it may be because of what they have learned in their social networks."
The research was supported by Fondation Go. The authors have disclosed no relevant financial relationships.
Pediatrics. 2012;130:293-298.
July 23, 2012 — Parents of children with trisomy 13 or trisomy 18 (T13-18) who seek out social networks have experiences that differ profoundly from the bleak picture painted by many clinicians, a new study shows.
T13-18 is associated with severe neurodevelopmental disabilities, the authors explain. For children with full T13-18, survival rates beyond 1 year range from 6% to 12%. The American Academy of Pediatrics recommends against resuscitation for these patients, and parents who make choices incongruent with these recommendations often report feeling unsupported and misunderstood by their physicians.
"Parents who become involved in social networks are likely to gain knowledge of a diverse range of choices and outcomes," the authors write in an article published online July 23 and in the August issue of Pediatrics. The researchers surveyed participants in social networks for parents of children with T13-18 in the hopes of facilitating communication between parents and clinicians.
The authors were led by Annie Janvier, MD, PhD, from the University of Montreal and the Clinical Ethics Sainte-Justine Hospital in Montreal, Canada. Through email, they invited 503 parents from 18 English-language Web sites and Facebook groups dedicated to T13-18 to participate in the survey. They received eligible responses from 74 fathers and 258 mothers, representing 272 children. Of those children, 216 had full T13-18 (parents of children with mosaicism and other structural variations involving chromosomes 13 and 18 [variants] were also included).
Of the 216 children with full T13-18, 86 (40%) lived longer than 1 year, 45 (21%) lived longer than 5 years, and 26 (12%) lived longer than 10 years. Similar patterns were seen for children with mosaicism and variants. Eighty-nine percent of the parents of the 187 children who died reported that the overall experience of their child's life was positive. However, 37% of the parents who chose clinical interventions for their children reported feeling judged. Other negative experiences included being told that their child's condition was incompatible with life (reported by 87% of all parents in the study), that the child would live a life of suffering (57%), that the child would be a vegetable or have a meaningless life (50% for each), or that the child would ruin the parents' marriage or the family (23% for each).
The most common complaint was that clinicians often did not see the baby as being unique or having value. Some parents reported that the healthcare provider never asked the baby's name and would refer to the baby as "an 'it', a 'that,' a 'vegetable', or 'a T13 or T18,' " the authors write. "[P]arents reported appreciating the following from healthcare providers: referring to the child by name (even if unborn), offering to take pictures (in and ex utero), referring to other families or web sites, and describing not only those organs that had malformations but also those that did not have malformations."
The authors note that this cohort is not a representative sample: the 1-year survival rate of babies with full T13-18 is higher than that reported in other population studies, and the mothers were older and better educated than average for their age groups. They hypothesized that social networks are more likely to be used by parents whose children survive longer. They also note that the study does not include data on parents who chose to terminate the pregnancy or who experienced fetal loss.
Still, "almost all parents reported a positive view of family life and the quality of life of their child with T13-18," they write.
"Parents of children newly diagnosed with T13-18 who become integrated with social networks may acquire views, hopes, and expectations that are incongruous with those held by some of the clinicians they will encounter.... When parents request medical interventions, it may be because of what they have learned in their social networks."
The research was supported by Fondation Go. The authors have disclosed no relevant financial relationships.
Pediatrics. 2012;130:293-298.