“MY BABY COULD LIVE THE BEST LIFE”: FAMILY PERSPECTIVES ON SERVICES FOLLOWING A PRENATAL DIAGNOSIS OF DOWN SYNDROME
1 online resource (77 pages) : PDF
University of North Carolina at Charlotte
Screenings and diagnostic tests provide individuals the opportunity to receive a prenatal diagnosis of Down syndrome as early as the first trimester of pregnancy. Post-diagnosis, families are presented with opportunities for services and supports to help them prepare for the birth of their child. Families have expressed concerns regarding the services and supports provided prenatally. The aim of this study was to investigate what services and supports are being provided following a prenatal diagnosis of Down syndrome, what are families’ perceptions of these services and supports, and what recommendations families suggest to enhance the services and supports. A researcher-developed questionnaire was used to survey 18 families who have children with Down syndrome to collect the data for this study. Data in this study were analyzed using descriptive statistics and quantitative categorical coding. This study discovered that services being provided are similar to what past research has reported and familial positive perceptions are increasing, but there is still a need for improvement. Limitations for this study were the researcher-developed questionnaire, sample size, families already connected with Down syndrome organizations, and inclusion criteria. Future research should be conducted to explore the effectiveness of support groups and meeting other families who have a child with Down syndrome, training professionals are receiving on interacting with families, and methods Down syndrome organizations and medical agencies can use to collaborate and support families. Implications for future practice for medical professionals are included, such as providing information on positive outcomes, increased training for professionals providing the diagnosis, and increased knowledge of local resources.
DIAGNOSISDIAGNOSTIC TESTINGDISABILITYDOWN SYNDROMEEARLY INTERVENTIONPRENATAL
Child & Family Studies
Rebich, SueHuber, LarissaKeilty, Bonnie
Thesis (M.Ed.)--University of North Carolina at Charlotte, 2018.
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