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Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study

The study objective was to identify communication messages that parents of children diagnosed with congenital cytomegalovirus (cCMV) infection reported as essential and helpful. We performed a secondary analysis of focus groups and interviews conducted with 41 parents of children with cCMV who had e...

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Autores principales: Lanzieri, Tatiana M., Hall, Mary Ann K., Rau, Ashrita, McBride, Holly, Watson, Danie, Rheaume, Carol, Demmler-Harrison, Gail
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10531899/
https://www.ncbi.nlm.nih.gov/pubmed/37754775
http://dx.doi.org/10.3390/ijns9030049
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author Lanzieri, Tatiana M.
Hall, Mary Ann K.
Rau, Ashrita
McBride, Holly
Watson, Danie
Rheaume, Carol
Demmler-Harrison, Gail
author_facet Lanzieri, Tatiana M.
Hall, Mary Ann K.
Rau, Ashrita
McBride, Holly
Watson, Danie
Rheaume, Carol
Demmler-Harrison, Gail
author_sort Lanzieri, Tatiana M.
collection PubMed
description The study objective was to identify communication messages that parents of children diagnosed with congenital cytomegalovirus (cCMV) infection reported as essential and helpful. We performed a secondary analysis of focus groups and interviews conducted with 41 parents of children with cCMV who had enrolled in a long-term follow-up cCMV study at an academic medical center. Three groups of parents who had children with cCMV participated in the study: parents with children symptomatic at birth, parents with children asymptomatic at birth who later developed sensorineural hearing loss, and parents with children asymptomatic at birth who remained asymptomatic into adulthood. Using a health marketing approach, we identified six general themes from the focus group sessions: initial diagnosis, likely health outcome(s), comfort and coping, symptom watch, resources, and prevention. Receiving the initial diagnosis was shocking for many parents, and they wanted to know how their child would or could be affected. They valued access to the information, follow-up visits for early detection of hearing loss and other developmental delays, and support from other parents. Parents wished to obtain this information from their pediatrician but felt that experts offered more up-to-date knowledge about prognosis, monitoring, and treatment. With more U.S. states implementing cCMV screening strategies which would lead to more infant diagnoses, it will be necessary for providers to meet parents’ expectations and communication needs.
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spelling pubmed-105318992023-09-28 Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study Lanzieri, Tatiana M. Hall, Mary Ann K. Rau, Ashrita McBride, Holly Watson, Danie Rheaume, Carol Demmler-Harrison, Gail Int J Neonatal Screen Article The study objective was to identify communication messages that parents of children diagnosed with congenital cytomegalovirus (cCMV) infection reported as essential and helpful. We performed a secondary analysis of focus groups and interviews conducted with 41 parents of children with cCMV who had enrolled in a long-term follow-up cCMV study at an academic medical center. Three groups of parents who had children with cCMV participated in the study: parents with children symptomatic at birth, parents with children asymptomatic at birth who later developed sensorineural hearing loss, and parents with children asymptomatic at birth who remained asymptomatic into adulthood. Using a health marketing approach, we identified six general themes from the focus group sessions: initial diagnosis, likely health outcome(s), comfort and coping, symptom watch, resources, and prevention. Receiving the initial diagnosis was shocking for many parents, and they wanted to know how their child would or could be affected. They valued access to the information, follow-up visits for early detection of hearing loss and other developmental delays, and support from other parents. Parents wished to obtain this information from their pediatrician but felt that experts offered more up-to-date knowledge about prognosis, monitoring, and treatment. With more U.S. states implementing cCMV screening strategies which would lead to more infant diagnoses, it will be necessary for providers to meet parents’ expectations and communication needs. MDPI 2023-08-27 /pmc/articles/PMC10531899/ /pubmed/37754775 http://dx.doi.org/10.3390/ijns9030049 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Lanzieri, Tatiana M.
Hall, Mary Ann K.
Rau, Ashrita
McBride, Holly
Watson, Danie
Rheaume, Carol
Demmler-Harrison, Gail
Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study
title Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study
title_full Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study
title_fullStr Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study
title_full_unstemmed Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study
title_short Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study
title_sort parental perspectives on communication from health care providers following a newborn diagnosis of congenital cytomegalovirus infection: a secondary analysis of a qualitative study
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10531899/
https://www.ncbi.nlm.nih.gov/pubmed/37754775
http://dx.doi.org/10.3390/ijns9030049
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