Dif ficulties Experienced by Turkish Parents and Their Coping Strategies: Children With Mucopolysaccharidosis
Küçük Resim Yok
Tarih
2020
Dergi Başlığı
Dergi ISSN
Cilt Başlığı
Yayıncı
Elsevier Science Inc
Erişim Hakkı
info:eu-repo/semantics/closedAccess
Özet
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.
Açıklama
Anahtar Kelimeler
Coping skills, Parents, Nursing, Rare diseases
Kaynak
Journal of Pediatric Nursing-Nursing Care of Children & Families
WoS Q Değeri
Q2
Scopus Q Değeri
Q1
Cilt
53
