Dif ficulties Experienced by Turkish Parents and Their Coping Strategies: Children With Mucopolysaccharidosis

Abstract

Purpose: The purpose of this study is to determine the parents' lived experiences whose children have Mucopolysaccharidosis (MPS) by using Husserl's phenomenology.

Design and methods: A phenomenology method was used as a qualitative research design in the study. The study included parents of 10 children who received weekly enzyme replacement therapy at a university hospital's paediatric endocrinology clinic. The data were collected using an in-depth interview method including an introductory information form and a semi-structured interview form. The interviews were recorded on a voice recorder and converted into written documents after the interview.

Results: The average age of the children was 8.8 +/- 1.8; the average age of the mothers was 32.6 +/- 3.6; and the average age of the fathers was 36.0 +/- 3.5. The data analysis identi fied the following three main themes: (1) difficulties, (2) concerns, and (3) coping.

Conclusions: This study determined that parents of children with an MPS diagnosis had many dif ficulties related to multi-systemic problems (orthopaedic problems, vision and hearing problems, speech disorders, cardiac problems) caused by the disease.

Practice implications: Parents should receive support from healthcare professionals to develop coping strategies that are appropriate for the physical and psychological dif ficulties experienced and to comply with the disease. (c) 2020 Elsevier Inc. All rights reserved.