Caring for Girls With Salt-Wasting Congenital Adrenal Hyperplasia: A Qualitative Study From Central Java, Indonesia.

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.