Cargando…

Challenges faced by parents of screen-detected children with Cystic Fibrosis: The ICOS study

BACKGROUND: Informal care is an essential component of overall care for patients, particularly those with chronic illnesses such as Cystic Fibrosis (CF). This study aims to assess the level of caregiving burden faced by parents/caregivers of children with CF (CwCF) recruited to the Irish Comparative...

Descripción completa

Detalles Bibliográficos
Autores principales: Bhatnagar, R, Linnane, B, Herzig, M, Ni Chroinin, M, Cox, D, Elnazir, B, Segurado, R, Kirwan, L, Southern, KW, Fitzpatrick, P
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9593939/
http://dx.doi.org/10.1093/eurpub/ckac131.214
_version_ 1784815287873306624
author Bhatnagar, R
Linnane, B
Herzig, M
Ni Chroinin, M
Cox, D
Elnazir, B
Segurado, R
Kirwan, L
Southern, KW
Fitzpatrick, P
author_facet Bhatnagar, R
Linnane, B
Herzig, M
Ni Chroinin, M
Cox, D
Elnazir, B
Segurado, R
Kirwan, L
Southern, KW
Fitzpatrick, P
author_sort Bhatnagar, R
collection PubMed
description BACKGROUND: Informal care is an essential component of overall care for patients, particularly those with chronic illnesses such as Cystic Fibrosis (CF). This study aims to assess the level of caregiving burden faced by parents/caregivers of children with CF (CwCF) recruited to the Irish Comparative Outcomes Study of CF (ICOS), a historical cohort study of CwCF. In July 2011, a new-born screening programme began in Ireland. METHODS: The study population includes the parents of screen-detected CwCF born between July 2011-2021. The Challenge of Living with CF-Short Form is a new, validated 15-item tool that evaluates the caregiving burden faced by parents from the child’s diagnosis until early adolescence. Comparisons based on the age of screen-detected CwCF were conducted. SPSS was used for analysis. RESULTS: 69 parents of screen-detected CwCF responded. Fifty percent of parents of older children (aged 4-12+ years) and 35% of the parents of toddlers (0-3 years) faced moderate-high level difficulties in managing the extra expenses required for the care of their CwCF, despite all children receiving free clinical care, prescriptions and medications. A significantly greater proportion of the parents of older children than younger children experienced constant problems in managing daily oral medication routines (37% vs 13%; P = 0.039), nebulised medication routines (67.5% vs 21.4%; P = 0.003), and physiotherapy routines (57.8% vs 31.8%; P = 0.046) CONCLUSIONS: Using the novel Challenge of living with Cystic Fibrosis-Short Form questionnaire, our findings suggest that the caregiving burden is higher for parents of older CwCF. Expenses incurred by parents of a child with a serious chronic medical condition go beyond medical care and treatment expenses. KEY MESSAGES: • The challenge of living with Cystic Fibrosis-Short Form is being used for the first time in a population setting. • The caregiving burden was more pronounced in the parents of older CwCF.
format Online
Article
Text
id pubmed-9593939
institution National Center for Biotechnology Information
language English
publishDate 2022
publisher Oxford University Press
record_format MEDLINE/PubMed
spelling pubmed-95939392022-11-22 Challenges faced by parents of screen-detected children with Cystic Fibrosis: The ICOS study Bhatnagar, R Linnane, B Herzig, M Ni Chroinin, M Cox, D Elnazir, B Segurado, R Kirwan, L Southern, KW Fitzpatrick, P Eur J Public Health Poster Displays BACKGROUND: Informal care is an essential component of overall care for patients, particularly those with chronic illnesses such as Cystic Fibrosis (CF). This study aims to assess the level of caregiving burden faced by parents/caregivers of children with CF (CwCF) recruited to the Irish Comparative Outcomes Study of CF (ICOS), a historical cohort study of CwCF. In July 2011, a new-born screening programme began in Ireland. METHODS: The study population includes the parents of screen-detected CwCF born between July 2011-2021. The Challenge of Living with CF-Short Form is a new, validated 15-item tool that evaluates the caregiving burden faced by parents from the child’s diagnosis until early adolescence. Comparisons based on the age of screen-detected CwCF were conducted. SPSS was used for analysis. RESULTS: 69 parents of screen-detected CwCF responded. Fifty percent of parents of older children (aged 4-12+ years) and 35% of the parents of toddlers (0-3 years) faced moderate-high level difficulties in managing the extra expenses required for the care of their CwCF, despite all children receiving free clinical care, prescriptions and medications. A significantly greater proportion of the parents of older children than younger children experienced constant problems in managing daily oral medication routines (37% vs 13%; P = 0.039), nebulised medication routines (67.5% vs 21.4%; P = 0.003), and physiotherapy routines (57.8% vs 31.8%; P = 0.046) CONCLUSIONS: Using the novel Challenge of living with Cystic Fibrosis-Short Form questionnaire, our findings suggest that the caregiving burden is higher for parents of older CwCF. Expenses incurred by parents of a child with a serious chronic medical condition go beyond medical care and treatment expenses. KEY MESSAGES: • The challenge of living with Cystic Fibrosis-Short Form is being used for the first time in a population setting. • The caregiving burden was more pronounced in the parents of older CwCF. Oxford University Press 2022-10-25 /pmc/articles/PMC9593939/ http://dx.doi.org/10.1093/eurpub/ckac131.214 Text en © The Author(s) 2022. Published by Oxford University Press on behalf of the European Public Health Association. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Poster Displays
Bhatnagar, R
Linnane, B
Herzig, M
Ni Chroinin, M
Cox, D
Elnazir, B
Segurado, R
Kirwan, L
Southern, KW
Fitzpatrick, P
Challenges faced by parents of screen-detected children with Cystic Fibrosis: The ICOS study
title Challenges faced by parents of screen-detected children with Cystic Fibrosis: The ICOS study
title_full Challenges faced by parents of screen-detected children with Cystic Fibrosis: The ICOS study
title_fullStr Challenges faced by parents of screen-detected children with Cystic Fibrosis: The ICOS study
title_full_unstemmed Challenges faced by parents of screen-detected children with Cystic Fibrosis: The ICOS study
title_short Challenges faced by parents of screen-detected children with Cystic Fibrosis: The ICOS study
title_sort challenges faced by parents of screen-detected children with cystic fibrosis: the icos study
topic Poster Displays
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9593939/
http://dx.doi.org/10.1093/eurpub/ckac131.214
work_keys_str_mv AT bhatnagarr challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT linnaneb challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT herzigm challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT nichroininm challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT coxd challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT elnazirb challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT segurador challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT kirwanl challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT southernkw challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy
AT fitzpatrickp challengesfacedbyparentsofscreendetectedchildrenwithcysticfibrosistheicosstudy