The Negotiation of Medical Treatments by Parents of Children with Congenital Adrenal Hyperplasia in Poland

Dados Bibliográficos

ID5043678
AutoresMagdalena Radkowska-Walkowicz (0000-0002-4127-9592, University of Warsaw, autor correspondente), Anna Kucharska (0000-0003-4987-2320, Medical University of Warsaw)
Ano2025
Volume44
Fascículo5
Páginas488-502
Data de publicação2025-07-04
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoMedical Anthropology (JOURNAL)
Identificadores do periódicoISSN: 0145-9740 • E-ISSN: 1545-5882
EditoraInforma UK Limited (PUBLISHER • GB)
DOI10.1080/01459740.2025.2464620
PMID40313064
OpenAlexW4410042598
IdiomaEN
Citações recebidas1
Referências citadas51

Congenital adrenal hyperplasia (CAH) is a rare inherited disease that requires continuous home-based treatment. The increasing accessibility of medical information and the presence of an active online community-particularly a dedicated Facebook group-enable parents of children with CAH to become engaged participants in discussions about therapy and innovative solutions. Drawing on ethnographic research, this study explores the complex dynamics of medical decision-making and negotiation between parents and doctors. Key areas of contention include: 1. Medication dosage. 2. The use of cortisol pump technology. 3. The availability of emergency hydrocortisone injection kits. 4. Early genital surgery. While parents actively seek knowledge and challenge medical approaches, their influence on biomedical practices remains limited. The study argues that these negotiations, though often subtle and slow, contribute to changing treatment and become the part of the "logic of care

Congenital adrenal hyperplasia · Disease · Ethnography · Family medicine · Negotiation · Social science · Sociology · Hormonal and reproductive studies · Internal Medicine · Medicine · Reproductive Health and Contraception · Sexual Differentiation and Disorders · Pediatrics