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

Basit Öğe Kaydı
dc.authoridZengin, Mürşide/0000-0003-1453-6028
dc.authoridYAYAN, Emriye Hilal/0000-0003-0075-4171
dc.authoridAkinci, Aysehan/0000-0001-7267-9444
dc.authorwosidZengin, Mürşide/AAC-2663-2021
dc.authorwosidYAYAN, Emriye Hilal/AAB-9526-2020
dc.authorwosidAkinci, Aysehan/AAC-6847-2021
dc.contributor.authorZengin, Murside
dc.contributor.authorYayan, Emriye Hilal
dc.contributor.authorAkinci, Aysehan
dc.date.accessioned2024-08-04T20:47:13Z
dc.date.available2024-08-04T20:47:13Z
dc.date.issued2020
dc.departmentİnönü Üniversitesien_US
dc.description.abstractPurpose: 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.en_US
dc.identifier.doi10.1016/j.pedn.2020.03.009
dc.identifier.endpageE148en_US
dc.identifier.issn0882-5963
dc.identifier.pmid32217000en_US
dc.identifier.scopus2-s2.0-85082128229en_US
dc.identifier.scopusqualityQ1en_US
dc.identifier.startpageE142en_US
dc.identifier.urihttps://doi.org/10.1016/j.pedn.2020.03.009
dc.identifier.urihttps://hdl.handle.net/11616/99228
dc.identifier.volume53en_US
dc.identifier.wosWOS:000545442900039en_US
dc.identifier.wosqualityQ2en_US
dc.indekslendigikaynakWeb of Scienceen_US
dc.indekslendigikaynakScopusen_US
dc.indekslendigikaynakPubMeden_US
dc.language.isoenen_US
dc.publisherElsevier Science Incen_US
dc.relation.ispartofJournal of Pediatric Nursing-Nursing Care of Children & Familiesen_US
dc.relation.publicationcategoryMakale - Uluslararası Hakemli Dergi - Kurum Öğretim Elemanıen_US
dc.rightsinfo:eu-repo/semantics/closedAccessen_US
dc.subjectCoping skillsen_US
dc.subjectParentsen_US
dc.subjectNursingen_US
dc.subjectRare diseasesen_US
dc.titleDif ficulties Experienced by Turkish Parents and Their Coping Strategies: Children With Mucopolysaccharidosisen_US
dc.typeArticleen_US

Dosyalar

Koleksiyon

WoS İndeksli Yayınlar Koleksiyonu
PubMed İndeksli Yayın Koleksiyonu
Scopus İndeksli Yayınlar Koleksiyonu