Parents’ perceptions of genetics services for congenital heart disease: the role of demographic, clinical, and psychological factors in determining service ... View Full Text


Ontology type: schema:ScholarlyArticle      Open Access: True


Article Info

DATE

2014-06

AUTHORS

Nadine A. Kasparian, Blake Fidock, Gary F. Sholler, Christoph Camphausen, David N. Murphy, Stephen G. Cooper, Ritik Kaul, Owen Jones, David S. Winlaw, Edwin P.E. Kirk

ABSTRACT

PURPOSE: We sought to identify the demographic, clinical, and psychological factors associated with parents' attendance at clinical genetics services for congenital heart disease. METHODS: A survey assessing access to cardiac genetics services and a range of other variables was sent to the families of 213 children diagnosed with congenital heart disease between the years 2000 and 2009 at the Sydney Children's Hospital, Australia. RESULTS: Of the 114 respondents, 22% had accessed cardiac genetics services. Variables strongly associated with service attendance included presence of a syndrome associated with congenital heart disease (odds ratio = 17.93; P < 0.001) and antenatal diagnosis of congenital heart disease (odds ratio = 4.13; P = 0.02). Most participants (87%) perceived genetic factors as "quite" or "extremely important" in the development of congenital heart disease, and many (73%) believed that receiving information about congenital heart disease and genetics was "quite" or "extremely important"; however, only 36% of participants could recall receiving information of this nature. Forty-two percent of parents reported current concerns about their child's health, and a substantial subset reported levels of depression (26%), anxiety (27%), and stress (32%) warranting clinical attention. CONCLUSION: There is a strong desire among parents of children with congenital heart disease for greater information about the role of genetic factors; however, most families do not access cardiac genetics services and report limited recall of information gathered from other sources. More... »

PAGES

460

Identifiers

URI

http://scigraph.springernature.com/pub.10.1038/gim.2013.169

DOI

http://dx.doi.org/10.1038/gim.2013.169

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1046508064

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/24202083


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    "description": "PURPOSE: We sought to identify the demographic, clinical, and psychological factors associated with parents' attendance at clinical genetics services for congenital heart disease.\nMETHODS: A survey assessing access to cardiac genetics services and a range of other variables was sent to the families of 213 children diagnosed with congenital heart disease between the years 2000 and 2009 at the Sydney Children's Hospital, Australia.\nRESULTS: Of the 114 respondents, 22% had accessed cardiac genetics services. Variables strongly associated with service attendance included presence of a syndrome associated with congenital heart disease (odds ratio = 17.93; P < 0.001) and antenatal diagnosis of congenital heart disease (odds ratio = 4.13; P = 0.02). Most participants (87%) perceived genetic factors as \"quite\" or \"extremely important\" in the development of congenital heart disease, and many (73%) believed that receiving information about congenital heart disease and genetics was \"quite\" or \"extremely important\"; however, only 36% of participants could recall receiving information of this nature. Forty-two percent of parents reported current concerns about their child's health, and a substantial subset reported levels of depression (26%), anxiety (27%), and stress (32%) warranting clinical attention.\nCONCLUSION: There is a strong desire among parents of children with congenital heart disease for greater information about the role of genetic factors; however, most families do not access cardiac genetics services and report limited recall of information gathered from other sources.", 
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300 schema:name Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Sydney, New South Wales, Australia
301 Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Kensington, New South Wales, Australia
302 Heart Centre for Children, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
303 rdf:type schema:Organization
304 https://www.grid.ac/institutes/grid.414009.8 schema:alternateName Sydney Children's Hospital
305 schema:name Department of Cardiology, Sydney Children’s Hospital, Randwick, New South Wales, Australia
306 Department of Medical Genetics, Sydney Children’s Hospital, Randwick, New South Wales, Australia
307 Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Kensington, New South Wales, Australia
308 Heart Centre for Children, The Children’s Hospital at Westmead, Westmead, New South Wales, Australia
309 rdf:type schema:Organization
 




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