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Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study
BACKGROUND: Illness uncertainty in parents of children with congenital adrenal hyperplasia (CAH) refers to parents’ inability to create meaning in events related to their children having CAH. This may influence their role in caring for children with CAH. OBJECTIVE: The study aimed to determine facto...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Belitung Raya Foundation
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10353655/ https://www.ncbi.nlm.nih.gov/pubmed/37469639 http://dx.doi.org/10.33546/bnj.2379 |
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author | Larasati, Irene Astrid Saktini, Fanti Winarni, Tri Indah Ediati, Annastasia Utari, Agustini |
author_facet | Larasati, Irene Astrid Saktini, Fanti Winarni, Tri Indah Ediati, Annastasia Utari, Agustini |
author_sort | Larasati, Irene Astrid |
collection | PubMed |
description | BACKGROUND: Illness uncertainty in parents of children with congenital adrenal hyperplasia (CAH) refers to parents’ inability to create meaning in events related to their children having CAH. This may influence their role in caring for children with CAH. OBJECTIVE: The study aimed to determine factors associated with illness uncertainty experienced by parents of children with CAH in a developing country. METHODS: A cross-sectional study was conducted on 80 parents (43 mothers and 37 fathers) of children with CAH, selected using consecutive sampling methods. The Parent’s Perception of Uncertainty Scale (PPUS) was used to measure the illness uncertainty levels. Data were collected from March 2020 to October 2020. Independent t-test and chi-square test were used to determine factors (parent’s gender, age, educational level, monthly household income, number of children with CAH, history of child death due to CAH, child’s age when first diagnosed with CAH, duration of therapy, gender change, type of CAH (salt wasting/SW or simple virilizing/SV), current gender, and genitoplasty) influencing illness uncertainty in parents. RESULTS: The mean scores of PPUS were 42.3 ± 12.91, and the majority of parents had a low PPUS score (49; 61%). Parents of children with SW-CAH showed higher uncertainty (44.2 ± 12.77) than those with SV-CAH (32.6 ± 8.86; p = 0.003). Parents who lost their children due to CAH were more likely to report a moderate illness uncertainty than parents who never experienced child mortality due to CAH (χ(2)(1, 80) = 4.893; p = 0.027). CONCLUSION: The factors significantly affecting uncertainty in parents of children with CAH determined in this study might help healthcare professionals, including nurses, to play a pivotal role in giving pertinent information regarding their children’s health, disease, and therapy to help manage parental uncertainty. |
format | Online Article Text |
id | pubmed-10353655 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Belitung Raya Foundation |
record_format | MEDLINE/PubMed |
spelling | pubmed-103536552023-07-19 Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study Larasati, Irene Astrid Saktini, Fanti Winarni, Tri Indah Ediati, Annastasia Utari, Agustini Belitung Nurs J Original Research BACKGROUND: Illness uncertainty in parents of children with congenital adrenal hyperplasia (CAH) refers to parents’ inability to create meaning in events related to their children having CAH. This may influence their role in caring for children with CAH. OBJECTIVE: The study aimed to determine factors associated with illness uncertainty experienced by parents of children with CAH in a developing country. METHODS: A cross-sectional study was conducted on 80 parents (43 mothers and 37 fathers) of children with CAH, selected using consecutive sampling methods. The Parent’s Perception of Uncertainty Scale (PPUS) was used to measure the illness uncertainty levels. Data were collected from March 2020 to October 2020. Independent t-test and chi-square test were used to determine factors (parent’s gender, age, educational level, monthly household income, number of children with CAH, history of child death due to CAH, child’s age when first diagnosed with CAH, duration of therapy, gender change, type of CAH (salt wasting/SW or simple virilizing/SV), current gender, and genitoplasty) influencing illness uncertainty in parents. RESULTS: The mean scores of PPUS were 42.3 ± 12.91, and the majority of parents had a low PPUS score (49; 61%). Parents of children with SW-CAH showed higher uncertainty (44.2 ± 12.77) than those with SV-CAH (32.6 ± 8.86; p = 0.003). Parents who lost their children due to CAH were more likely to report a moderate illness uncertainty than parents who never experienced child mortality due to CAH (χ(2)(1, 80) = 4.893; p = 0.027). CONCLUSION: The factors significantly affecting uncertainty in parents of children with CAH determined in this study might help healthcare professionals, including nurses, to play a pivotal role in giving pertinent information regarding their children’s health, disease, and therapy to help manage parental uncertainty. Belitung Raya Foundation 2023-02-12 /pmc/articles/PMC10353655/ /pubmed/37469639 http://dx.doi.org/10.33546/bnj.2379 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by-nc/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License, which allows others to remix, tweak, and build upon the work non-commercially as long as the original work is properly cited. The new creations are not necessarily licensed under the identical terms. |
spellingShingle | Original Research Larasati, Irene Astrid Saktini, Fanti Winarni, Tri Indah Ediati, Annastasia Utari, Agustini Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study |
title | Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study |
title_full | Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study |
title_fullStr | Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study |
title_full_unstemmed | Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study |
title_short | Factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: A cross-sectional study |
title_sort | factors influencing illness uncertainty in parents of children with congenital adrenal hyperplasia in a developing country: a cross-sectional study |
topic | Original Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10353655/ https://www.ncbi.nlm.nih.gov/pubmed/37469639 http://dx.doi.org/10.33546/bnj.2379 |
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