The Experience of Families With Children With Trisomy 13 and 18 in Social Networks

@article{Janvier2012TheEO,
  title={The Experience of Families With Children With Trisomy 13 and 18 in Social Networks},
  author={Annie Janvier and Barbara Farlow and Benjamin S. Wilfond},
  journal={Pediatrics},
  year={2012},
  volume={130},
  pages={293 - 298}
}
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… 

Tables from this paper

Parental hopes, interventions, and survival of neonates with trisomy 13 and trisomy 18
TLDR
The goals of parents of children with trisomy 13 or 18 were to meet their child, be discharged home and be a family, and having a postnatal diagnosis was the independent factor most associated with these goals.
Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study
TLDR
Investigation of parental experiences with clinicians and practical recommendations and behaviors clinicians could emulate to avoid conflict found realistic and compassionate support of parents living with children with trisomy 13 and 18 is possible.
Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18
TLDR
Insights from parents' perspective can better enable healthcare providers to counsel and support families and describe “Special” healthcare providers as those who gave balanced and personalized information, respected their choice, and provided support.
“You Can Carry the Torch Now:” A Qualitative Analysis of Parents’ Experiences Caring for a Child with Trisomy 13 or 18
  • Joshua D Arthur, D. Gupta
  • Medicine, Psychology
    HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues
  • 2017
TLDR
The paper concludes that while over-reliance on dire prognostic data can alienate families, examining the voice, character and plot of patient stories can be a powerful way for physicians to foster shared decision-making with families.
Medical interventions for children with trisomy 13 and trisomy 18: what is the value of a short disabled life?
TLDR
Investigating these conditions further and improving communication with parents is needed to be able to better inform parents and providing balanced information for families and personalised care for each child is recommended.
Natural history and parental experience of children with trisomy 18 based on a questionnaire given to a Japanese trisomy 18 parental support group
TLDR
Factors significantly associated with survival over 1 year included diagnosis after birth, absence of prematurity, heavier birth weight, presence of esophageal atresia, extubation, ability to feed orally without medical assistance, and home discharge.
Medical interventions and survival by gender of children with trisomy 18
TLDR
Examination of children with full trisomy 18 drawn from the Tracking Rare Incidence Syndromes project database suggests improved outcomes when given necessary and aggressive medical interventions.
A Case Study of Trisomy 13: Balancing Hope and Reality
  • Christina O Stafford
  • Medicine, Psychology
    Advances in neonatal care : official journal of the National Association of Neonatal Nurses
  • 2015
TLDR
This case describes an intrauterine growth restricted preterm female presenting with multiple dysmorphic features with a definitive diagnosis of trisomy 13 and caregiver information on the diagnosis and specialized palliative care, which may improve infant and family outcomes.
Treatment Decisions for Babies with Trisomy 13 and 18
TLDR
The ways in which trisomy 13 and 18 conditions are portrayed in pediatrics textbooks and on social media sites that offer support to parents are reviewed to suggest an appropriate way to deal with clinical decisions for babies with these trisomies.
Perspectives on the care and management of infants with trisomy 18 and trisomy 13: striving for balance
  • J. Carey
  • Medicine
    Current opinion in pediatrics
  • 2012
TLDR
A balanced approach to counseling families of the newborn with trisomy 18 and 13 at the time of diagnosis is recommended, which should include presentation of accurate survival figures, avoidance of language that assumes outcome, communication of developmental outcome that does not presuppose perception of quality of life, and respect for the family's choice.
...
1
2
3
4
5
...

References

SHOWING 1-10 OF 50 REFERENCES
The health-care experiences of families given the prenatal diagnosis of trisomy 18
TLDR
Several specific aspects of care were identified as key in either being highly satisfied or dissatisfied: expressions of empathy from provider, continuity of care, communication, valuing the fetus and participation in medical decision-making.
Natural history of trisomy 18 and trisomy 13: I. Growth, physical assessment, medical histories, survival, and recurrence risk.
TLDR
Survival in this group of children was better than in other studies due to ascertainment bias, and long-term survival did not appear to be due to mosaicism.
Parental Perspectives of the Health Status and Health-Related Quality of Life of Teen-Aged Children Who Were Extremely Low Birth Weight and Term Controls
TLDR
ELBW children were reported to have a greater burden of disability than were control children based on parental descriptions, and parents of ELBW children, on average, rated the health-related quality of life of their children fairly high, suggesting differences in reported functional status are not necessarily associated with lower utility scores.
Survival of Texas infants born with trisomies 21, 18, and 13
TLDR
The results of this study provide comprehensive population‐based information for survival of infants with trisomies 21, 18, and 13 and there were no differences in survival rates by ethnicity.
Attitudes Toward Neonatal Intensive Care Treatment of Preterm Infants With a High Risk of Developing Long-term Disabilities
TLDR
It is suggested that parents of preterm infants as a group were most likely to save the infant at all costs and prepared to tolerate more severe disability health states and personal characteristics, in particular religious belief and severity of neonatal complications, have overriding influence on these attitudes.
Attitudes of parents and health care professionals toward active treatment of extremely premature infants.
TLDR
Parents, whether of term or extremely premature children, are more in favor of intervening to save the infant irrespective of its weight or condition at birth than are professionals, so it is imperative that there be joint decision making.
Natural history of trisomy 18 and trisomy 13: II. Psychomotor development.
TLDR
Although individuals withtrisomy 18 and trisomy 13 were clearly functioning in the severe to profound developmentally handicapped range, they did achieve some psychomotor maturation and always continued to learn.
Trisomies 13 and 18: Population prevalences, characteristics, and prenatal diagnosis, metropolitan Atlanta, 1994–2003
TLDR
The prevalence and characteristics of trisomy 13 and 18 using data from a population‐based surveillance system, the Metropolitan Atlanta Congenital Defects Program, showed that maternal age ≥35 years was a risk factor for both conditions.
Population-based analyses of mortality in trisomy 13 and trisomy 18.
TLDR
It is found that 5% to 10% of people with these conditions survive beyond the first year of life, and race and gender seemed to affect survival in both conditions, with girls and blacks showing higher median ages at death.
Lethal language, lethal decisions.
TLDR
The phrase "lethal anomaly" is not an accurate clinical description; instead, it serves to convey an implicit normative view about quality of life, which obscures the normative nature of the decision and interferes with authentic parental autonomy.
...
1
2
3
4
5
...