Caring for Girls With Salt-Wasting Congenital Adrenal Hyperplasia: A Qualitative Study From Central Java, Indonesia.
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| Title: | Caring for Girls With Salt-Wasting Congenital Adrenal Hyperplasia: A Qualitative Study From Central Java, Indonesia. |
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| Authors: | Sari JI, Pramudani AH, Ediati A, Utari A |
| Source: | Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners [J Pediatr Health Care] 2025 Nov 04. Date of Electronic Publication: 2025 Nov 04. |
| Publication Model: | Ahead of Print |
| Publication Type: | Journal Article |
| Language: | English |
| Journal Info: | Publisher: Mosby Country of Publication: United States NLM ID: 8709735 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1532-656X (Electronic) Linking ISSN: 08915245 NLM ISO Abbreviation: J Pediatr Health Care Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: St. Louis, Mo. : Mosby, [c1987- |
| Abstract: | Introduction: Congenital adrenal hyperplasia (CAH) imposes significant lifelong challenges, yet existing policies and the implementation of healthcare systems in Indonesia have not fully addressed the needs of affected families. Methodology: This qualitative descriptive phenomenology study employed Braun and Clarke's inductive thematic analysis to explore the main challenges faced by 13 parents of female children aged 0-18 years old with salt-wasting CAH in Central Java, Indonesia. Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ). Results: Four major challenges reported by the parents were: financial burdens, public stigma, limited genetic literacy, and concerns regarding children's mental health. Discussion: Drawing on parental testimonies, we propose policy and practical recommendations to improve CAH care, particularly within Indonesia's healthcare context. (Copyright © 2025 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.) |
| Competing Interests: | CONFLICTS OF INTEREST All authors have no conflict of interest to declare. |
| Contributed Indexing: | Keywords: Caregiver burden; Health Policy; financial burden; mental health; social stigma |
| Entry Date(s): | Date Created: 20251104 Latest Revision: 20251104 |
| Update Code: | 20251104 |
| DOI: | 10.1016/j.pedhc.2025.09.024 |
| PMID: | 41186554 |
| Database: | MEDLINE |
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Nájsť tento článok vo Web of Science | Abstract: | Introduction: Congenital adrenal hyperplasia (CAH) imposes significant lifelong challenges, yet existing policies and the implementation of healthcare systems in Indonesia have not fully addressed the needs of affected families.<br />Methodology: This qualitative descriptive phenomenology study employed Braun and Clarke's inductive thematic analysis to explore the main challenges faced by 13 parents of female children aged 0-18 years old with salt-wasting CAH in Central Java, Indonesia. Reporting followed the Consolidated Criteria for Reporting Qualitative Research (COREQ).<br />Results: Four major challenges reported by the parents were: financial burdens, public stigma, limited genetic literacy, and concerns regarding children's mental health.<br />Discussion: Drawing on parental testimonies, we propose policy and practical recommendations to improve CAH care, particularly within Indonesia's healthcare context.<br /> (Copyright © 2025 National Association of Pediatric Nurse Practitioners. Published by Elsevier Inc. All rights reserved.) |
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| ISSN: | 1532-656X |
| DOI: | 10.1016/j.pedhc.2025.09.024 |