Family perspectives on gaps in health care for people with Down syndrome

2022 ◽  
Author(s):  
Emily King ◽  
Mason Remington ◽  
Heidi Berger
Keyword(s):  
Health Care ◽  
Down Syndrome ◽  
Family Perspectives

scholarly journals Prenatal Genetic Screening and Potential Complicity in Abortion: Considerations for Catholic Health Care

2019 ◽  
Vol 87 (2) ◽  
pp. 206-217
Author(s):  
Carolyn A. Laabs
Keyword(s):  
Health Care ◽  
Down Syndrome ◽  
Genetic Screening ◽  
Genetic Disorder ◽  
Diagnostic Testing ◽  
First Trimester ◽  
The United States ◽  
Persons With Disabilities ◽  
Prenatal Diagnostic ◽  
Catholic Health Care

Prenatal genetic screening (PGS) is commonplace in the United States and in some parts of the world. The commonly held rationale for screening is to respect patient autonomy and to either allow the mother the opportunity to prepare herself to parent a child with a genetic disorder or to abort. As a result, PGS combined with prenatal diagnostic testing followed by abortion has significantly reduced the number of babies born with Down syndrome, for example, and, furthermore, has raised concerns about discrimination against persons with disabilities and eugenics. Although Catholic teaching clearly prohibits PGS and testing when undertaken with the intention of abortion, screening routinely is performed in Catholic health care, sometimes without regard to intent. This essay explores the issue of PGS in Catholic health care and suggests the development of a policy designed to support morally legitimate use of screening through an educational and informed consent process and attestation as to intent so as to prevent abortion or at least avoid complicity in it. Although the issue applies to prenatal testing as well as screening and for a variety of disorders as well as gender, this essay limits itself to a discussion of first trimester screening and a focus on Down syndrome. Objections to such a policy are discussed.

Co-occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines

2017 ◽  
Vol 176 (1) ◽  
pp. 116-133 ◽  
Author(s):  
George T. Capone ◽  
Brian Chicoine ◽  
Peter Bulova ◽  
Mary Stephens ◽  
Sarah Hart ◽  
...  
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Down Syndrome ◽  
Medical Conditions ◽  
Care Guidelines

scholarly journals Direct Health Care Costs of Children and Adolescents with Down Syndrome

2011 ◽  
Vol 159 (4) ◽  
pp. 541-545 ◽  
Author(s):  
Elizabeth A. Geelhoed ◽  
Ami Bebbington ◽  
Carol Bower ◽  
Aditya Deshpande ◽  
Helen Leonard
Keyword(s):  
Health Care ◽  
Down Syndrome ◽  
Children And Adolescents ◽  
Health Care Costs ◽  
Care Costs ◽  
Costs Of Children

scholarly journals One Institution - 2 Podcasts - Our experience

2019 ◽  
pp. 01-09
Author(s):  
Tony R Tarchichi ◽  
Jessica Garrison ◽  
Kishore Vellody
Keyword(s):  
Health Care ◽  
Down Syndrome ◽  
Health Care Providers ◽  
Health Care Professionals ◽  
Hospital Medicine ◽  
Care Providers ◽  
Pediatric Hospital ◽  
University Of Pittsburgh ◽  
The Subject ◽  
The University

Objectives: Podcasts have increased in popularity since the early 2000s. The number of medical podcasts created by physicians for patients and/or health care providers is increasing. With the increase in podcasts' popularity and their convenience, podcasts have significant potential for use as an educational tool. Methods: Faculty at the Children's Hospital of Pittsburgh of UPMC have created two podcasts, the Pediatric Hospital Medicine (PHM) podcast and the Down Syndrome Center (DSC) of Western Pennsylvania Podcast. This paper is a descriptive review of both podcasts. The PHM podcast was created for health care providers who care for hospitalized children. The DSC podcast was started as a source of reliable information for parents of children with Down syndrome. Results: The PHM podcast has over seventeen thousand downloads in over sixty-seven countries. The DSC podcast has over twenty-three thousand downloads in over sixty-nine countries. The PHM podcast has an option for listeners to get CME credit after they listen to the podcast if they click on a link at the University of Pittsburgh website and answer a few questions. Data from responses to these questions demonstrates that 83% of the respondents reported that the podcast either highly or very highly enhanced their knowledge of the subject matter, and 86.8% reported that the content of the podcast was highly or very highly relevant to their work. Conclusion: These results suggest podcasts are a popular and useful tool for disseminating information to families and health care professionals.

scholarly journals Maternal Perceptions to Open-Ended Questions about Life with Down Syndrome in Korea

2016 ◽  
Author(s):  
Hyunkyung Choi ◽  
Marcia Van Riper
Keyword(s):  
Health Care ◽  
Down Syndrome ◽  
Content Analysis ◽  
Cultural Differences ◽  
Health Care Professionals ◽  
Community Level ◽  
Culturally Appropriate ◽  
Maternal Perceptions ◽  
Written Responses ◽  
Beliefs And Attitudes

In this study the authors explored maternal perceptions of life with Down Syndrome (DS) in Korea. Written responses to open-ended questions were collected as a part of a larger study and examined using content analysis. Most mothers commonly reported responses toward children with DS at both the societal and community level were negative. Many mothers acknowledged that even though there are ongoing challenges associated with being the mother of a child with DS, they have experienced unexpected joys as well. Increased awareness of cultural differences in beliefs and attitudes about children with DS and their care will help health care professionals develop culturally appropriate interventions.

scholarly journals Health Care Professionals and Family Perspectives of Youth’s Trauma: Suggestions for Coaching and Self-Leadership

2015 ◽  
Vol 7 (1) ◽  
pp. 48-57
Author(s):  
Karien Jooste ◽  
Jeanette Maritz
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Social Institution ◽  
Qualitative Approach ◽  
Ripple Effect ◽  
Family Perspectives ◽  
Field Notes ◽  
The Individual ◽  
Social Turmoil ◽  
Healthy Community

Family forms the first and most important social institution in every society. Although traumatised families may be the root of much personal and social turmoil, a healthy community and family is the most vital way to deal with social change and challenges. In the light of increasing violence and trauma in South Africa, youths adverse exposures to violence and trauma have been identified as a distressing health care problem globally and for our communities and families at large. This study sought to explore and describe community and family perspectives of youth’s trauma in order to propose a holistic support approach. A qualitative approach was followed and participants (health care professionals and parents) were purposefully selected. Data were gathered through interviews, a focus group and field notes. Data were analysed thematically. Health care professionals and parents shared similar experiences and concerns relating to their perceptions of youths’ experiences of trauma. Parents however had a more negative regard of the youth and their capabilities to deal with trauma. The trauma experience was seldom contained to the individual but had a traumatising ripple effect on the parents, and community. This often left the entire system feeling helpless and depleted of resources to cope.

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