Home > Info for Professionals > Family Experiences

Family Experiences

Bruns, D. A. 2013. Erring on the side of life: Children with rare trisomy conditions, medical interventions and quality of lifeJournal of Genetic Disorders and Genetic Reports. DOI: 10.4172/2324-9331.1000103

Bruns D et al. 2012.  Examining In-Home Care Needs and Work Responsibilities for Parents with Children with a Rare Trisomy Condition. Int J of Developmental Disabilities, Vol. 58 No. 3, November, 2012, 159–175

Bruns D, Foerster K. 2011. ‘We’ve been through it all together’: Support for parents with children with rare trisomy conditions. Journal of Intellectual Disability Research, 55(4), 361–369  abstract

Felton LJ. 2011. Trisomy 13 and 18 and Quality of Life: Treading ‘‘Softly’’. Am J Med Genet Part A 155:1527–1528.

Guon, J., Wilfond, B. S., Farlow, B., Brazg, T., & Janvier, A. 2014. Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. American Journal of Medical Genetics Part A,164(2), 308-318. 

Janvier A et al. 2012. The Experience of Families With Children With Trisomy 13 and 18 in Social Networks. Am Academy of Pediatrics, doi:10.1542/peds.2012-0151

Kosho, et al. 2013. Natural History and Parental Experience of Children with Trisomy 18 Based on a Questionnaire Given to a Japanese Trisomy 18 Parental Support Group. Am J Med Genet, March 2013

Lathrop, A., & VandeVusse, L. 2011. Affirming motherhood: validation and invalidation in women’s perinatal hospice narratives. Birth, 38(3), 256-265. 

Picoraro, JA, et al. 2014. Posttraumatic Growth in Parents and Paediatric Patients. J Palliat Med 2014 Feb; 17(2):209-18

Redlinger-Grosse K, Bernhardt BA, Berg K, Muenke M, & Biesecker BB. The decision to continue: experiences and needs of parents who receive a prenatal diagnosis of holoprosencephaly. American Journal of Medical Genetics Part A.2002;112A(4):369-378. 

Walker LV, Miller VJ, & Dalton VK. The health-care experiences of families given the prenatal diagnosis of trisomy 18. Journal of Perinatology. 2008; 28(1):12-19. 

Wool C. 2011. Systematic review of the literature: parental outcomes after diagnosis of fetal anomaly. Advances in Neonatal Care. 2011; 11(3):182-192.