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Financial and relational impact of having a boy with posterior urethral valves

INTRODUCTION: Childhood chronic diseases affect family functioning and well-being. The aim of this study was to measure the impact of caring for a child with PUV, and the factors that most impact the burden of care. PATIENTS AND METHOD: We gave a questionnaire on the familial impact of having a chil...

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Autores principales: Harper, Luke, Botto, Nathalie, Peycelon, Matthieu, Michel, Jean-Luc, Leclair, Marc-David, Garnier, Sarah, Clermidi, Pauline, Arnaud, Alexis, Dariel, Anne, Dobremez, Eric, Faure, Alice, Fourcade, Laurent, Boudaoud, Nadia, Chaussy, Yann, Huiart, Laetitia, Bocquet, Valery, Ferdynus, Cyril, Sauvat, Frédérique
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10446897/
https://www.ncbi.nlm.nih.gov/pubmed/37622083
http://dx.doi.org/10.3389/fped.2023.1228248
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author Harper, Luke
Botto, Nathalie
Peycelon, Matthieu
Michel, Jean-Luc
Leclair, Marc-David
Garnier, Sarah
Clermidi, Pauline
Arnaud, Alexis
Dariel, Anne
Dobremez, Eric
Faure, Alice
Fourcade, Laurent
Boudaoud, Nadia
Chaussy, Yann
Huiart, Laetitia
Bocquet, Valery
Ferdynus, Cyril
Sauvat, Frédérique
author_facet Harper, Luke
Botto, Nathalie
Peycelon, Matthieu
Michel, Jean-Luc
Leclair, Marc-David
Garnier, Sarah
Clermidi, Pauline
Arnaud, Alexis
Dariel, Anne
Dobremez, Eric
Faure, Alice
Fourcade, Laurent
Boudaoud, Nadia
Chaussy, Yann
Huiart, Laetitia
Bocquet, Valery
Ferdynus, Cyril
Sauvat, Frédérique
author_sort Harper, Luke
collection PubMed
description INTRODUCTION: Childhood chronic diseases affect family functioning and well-being. The aim of this study was to measure the impact of caring for a child with PUV, and the factors that most impact the burden of care. PATIENTS AND METHOD: We gave a questionnaire on the familial impact of having a child with posterior urethral valves to all parents of a child included in the CIRCUP trial from 2015 onwards. The questionnaire included questions about the parents' demographics, health, professional, financial and marital status and how these evolved since the child's birth as well as the “impact on family scale” (IOFS), which gives a total score ranging from 15 (no impact) to 60 (maximum impact). We then analyzed both the results of the specific demographic questions as well as the factors which influenced the IOFS score. RESULTS: We retrieved answers for 38/51 families (74.5% response rate). The average IOFS score was 23.7 (15–51). We observed that the child's creatinine level had an effect on the IOFS score (p = 0.02), as did the parent's gender (p = 0.008), health status (p = 0.015), being limited in activity since the birth of the child (p = 0.020), being penalized in one's job (p = 0.009), being supported in one's job (p = 0.002), and decreased income (p = 0.004). Out of 38 mother/father binomials, 8/33 (24.2%) declared that they were no longer in the same relationship afterwards. CONCLUSION: In conclusion, having a boy with PUV significantly impacts families. The risk of parental separation and decrease in revenue is significant. Strategies aiming to decrease these factors should be put in place as soon as possible.
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spelling pubmed-104468972023-08-24 Financial and relational impact of having a boy with posterior urethral valves Harper, Luke Botto, Nathalie Peycelon, Matthieu Michel, Jean-Luc Leclair, Marc-David Garnier, Sarah Clermidi, Pauline Arnaud, Alexis Dariel, Anne Dobremez, Eric Faure, Alice Fourcade, Laurent Boudaoud, Nadia Chaussy, Yann Huiart, Laetitia Bocquet, Valery Ferdynus, Cyril Sauvat, Frédérique Front Pediatr Pediatrics INTRODUCTION: Childhood chronic diseases affect family functioning and well-being. The aim of this study was to measure the impact of caring for a child with PUV, and the factors that most impact the burden of care. PATIENTS AND METHOD: We gave a questionnaire on the familial impact of having a child with posterior urethral valves to all parents of a child included in the CIRCUP trial from 2015 onwards. The questionnaire included questions about the parents' demographics, health, professional, financial and marital status and how these evolved since the child's birth as well as the “impact on family scale” (IOFS), which gives a total score ranging from 15 (no impact) to 60 (maximum impact). We then analyzed both the results of the specific demographic questions as well as the factors which influenced the IOFS score. RESULTS: We retrieved answers for 38/51 families (74.5% response rate). The average IOFS score was 23.7 (15–51). We observed that the child's creatinine level had an effect on the IOFS score (p = 0.02), as did the parent's gender (p = 0.008), health status (p = 0.015), being limited in activity since the birth of the child (p = 0.020), being penalized in one's job (p = 0.009), being supported in one's job (p = 0.002), and decreased income (p = 0.004). Out of 38 mother/father binomials, 8/33 (24.2%) declared that they were no longer in the same relationship afterwards. CONCLUSION: In conclusion, having a boy with PUV significantly impacts families. The risk of parental separation and decrease in revenue is significant. Strategies aiming to decrease these factors should be put in place as soon as possible. Frontiers Media S.A. 2023-08-09 /pmc/articles/PMC10446897/ /pubmed/37622083 http://dx.doi.org/10.3389/fped.2023.1228248 Text en © 2023 Harper, Botto, Peycelon, Michel, Leclair, Garnier, Clermidi, Arnaud, Dariel, Dobremez, Faure, Fourcade, Boudaoud, Chaussy, Huiart, Bocquet, Ferdynus and Sauvat. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) (https://creativecommons.org/licenses/by/4.0/) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pediatrics
Harper, Luke
Botto, Nathalie
Peycelon, Matthieu
Michel, Jean-Luc
Leclair, Marc-David
Garnier, Sarah
Clermidi, Pauline
Arnaud, Alexis
Dariel, Anne
Dobremez, Eric
Faure, Alice
Fourcade, Laurent
Boudaoud, Nadia
Chaussy, Yann
Huiart, Laetitia
Bocquet, Valery
Ferdynus, Cyril
Sauvat, Frédérique
Financial and relational impact of having a boy with posterior urethral valves
title Financial and relational impact of having a boy with posterior urethral valves
title_full Financial and relational impact of having a boy with posterior urethral valves
title_fullStr Financial and relational impact of having a boy with posterior urethral valves
title_full_unstemmed Financial and relational impact of having a boy with posterior urethral valves
title_short Financial and relational impact of having a boy with posterior urethral valves
title_sort financial and relational impact of having a boy with posterior urethral valves
topic Pediatrics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10446897/
https://www.ncbi.nlm.nih.gov/pubmed/37622083
http://dx.doi.org/10.3389/fped.2023.1228248
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