“MY BABY COULD LIVE THE BEST LIFE”: FAMILY PERSPECTIVES ON SERVICES FOLLOWING A PRENATAL DIAGNOSIS OF DOWN SYNDROME

Search for this publication on Google Scholar
Martin, Z. (2018). “MY BABY COULD LIVE THE BEST LIFE”: FAMILY PERSPECTIVES ON SERVICES FOLLOWING A PRENATAL DIAGNOSIS OF DOWN SYNDROME. Unc Charlotte Electronic Theses And Dissertations.
Download PDF

Abstract

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.

Details
Author

Martin, Zachary

Title

“MY BABY COULD LIVE THE BEST LIFE”: FAMILY PERSPECTIVES ON SERVICES FOLLOWING A PRENATAL DIAGNOSIS OF DOWN SYNDROME

Physical Description

1 online resource (77 pages) : PDF

Date

2018

Degree Granting Institution

University of North Carolina at Charlotte

Abstract

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.

Genre

masters theses

Subjects--Topics

Special education
Education
Early childhood education

Degree

M.Ed.

Keywords

Diagnosis
Diagnostic Testing
Disability
Down Syndrome
Early Intervention
Prenatal

Subject Area

Child & Family Studies

Advisor(s)

Smith, JaneDiane

Committee Members

Rebich, Sue
Huber, Larissa
Keilty, Bonnie

Degree Note

Thesis (M.Ed.)--University of North Carolina at Charlotte, 2018.

Rights Statement

This Item is protected by copyright and/or related rights. You are free to use this Item in any way that is permitted by the copyright and related rights legislation that applies to your use. For other uses you need to obtain permission from the rights-holder(s). For additional information, see http://rightsstatements.org/page/InC/1.0/.

Rights Holder Information

Copyright is held by the author unless otherwise indicated.

Identifier

Martin_uncc_0694N_11934

Permalink

http://hdl.handle.net/20.500.13093/etd:1765