Experiences of Parents of Children with Mucopolysaccharidosis in Türkiye: A Qualitative Study

Purpose: Mucopolysaccharidosis increases morbidity and mortality by causing physical and mental limitations in children. Parents experience various difficulties, mostly due to delayed diagnosis and difficult treatment processes. This study aims to examine the experiences of parents regarding their child's illness process. Design and methods: In this qualitative study, semi-structured in-depth interviews were conducted with parents (n = 10) who had a child who had suffered from MPS for at least six months. Interviews were conducted and recorded after the parents were contacted through the MPS-LH association and informed consent was obtained. The conducting and reporting of the research were carried out according to the "Consolidated criteria for reporting qualitative research (COREQ)" checklist. Results: The mean age of the parents was 41.3 +/- 7.83. The diagnosis for most of the children was MPS type 4 A (n = 4) and the mean age of the children was 11.3 +/- 6.0. Three main themes were identified: 1) psychosocial effects; 2) difficulties and needs; and 3) coping resources. Conclusions: It was determined that the parents were affected socially and emotionally due to the child's diagnosis and the subsequent process. Implications to practice: It will be possible to provide the necessary support to parents with comprehensive nursing care that is planned according to the differing needs of children with MPS. (c) 2024 Elsevier Inc. All rights reserved.