دورية أكاديمية
Parent perspectives on the assessment of quality of life of their children with profound intellectual and multiple disabilities in the Netherlands.
| العنوان: | Parent perspectives on the assessment of quality of life of their children with profound intellectual and multiple disabilities in the Netherlands. |
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| المؤلفون: | Nieuwenhuijse AM; Department of Ethics, Law and Humanities, Amsterdam UMC, Academic Medical Centre, University of Amsterdam, Amsterdam, the Netherlands; Omega, Day Care Centre for Persons with PIMD, Amsterdam, the Netherlands. Electronic address: a.m.nieuwenhuijse@amsterdamumc.nl., Willems DL; Department of Ethics, Law and Humanities, Amsterdam UMC, Academic Medical Centre, University of Amsterdam, Amsterdam, the Netherlands., van Goudoever JB; Amsterdam UMC University of Amsterdam, Vrije Universiteit, Emma Children's Hospital, Department of Paediatrics, Amsterdam, the Netherlands., Olsman E; Section of Spiritual Care & Chaplaincy Studies, Department of Mediating Good Life, Protestant Theological University, Groningen, the Netherlands. |
| المصدر: | Research in developmental disabilities [Res Dev Disabil] 2023 Aug; Vol. 139, pp. 104536. Date of Electronic Publication: 2023 Jun 01. |
| نوع المنشور: | Journal Article |
| اللغة: | English |
| بيانات الدورية: | Publisher: Pergamon Press Country of Publication: United States NLM ID: 8709782 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1873-3379 (Electronic) Linking ISSN: 08914222 NLM ISO Abbreviation: Res Dev Disabil Subsets: MEDLINE |
| أسماء مطبوعة: | Original Publication: New York : Pergamon Press, c1987- |
| مواضيع طبية MeSH: | Disabled Persons* , Intellectual Disability*, Child ; Humans ; Quality of Life ; Netherlands ; Parents ; Family |
| مستخلص: | Background: Assessing Quality of Life (QoL) of persons with profound intellectual and multiple disabilities (PIMD) is challenging, yet QoL plays an important role in medical decision-making processes concerning persons with PIMD. The perspectives of parents of children with PIMD on the assessment of their QoL have not been studied. Aim: To explore the perspectives of parents on the assessment of QoL of their children. Methods: We conducted a qualitative study, forming three focus groups with 22 parents of children with PIMD to explore their views on what is necessary to assess QoL of their children and subsequently, who is best suited to assess QoL. Results: Parents describe a long-term relationship of the assessor with family (child and parents), with trust as an important aspect, as a requirement to assess QoL. Parents consider family members, preferably the parents themselves as the best assessors of QoL, followed by siblings. Professional caregivers, mostly mentioned by name, are considered the next alternative. Most parents thought that physicians do not know the child well enough to assess their QoL. Conclusions: In conclusion, the parents of children with PIMD in our study consider trust and a long-term relationship essential for assessing QoL. Competing Interests: Disclosure statement The authors declare that they have no conflicts of interests. (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.) |
| فهرسة مساهمة: | Keywords: Developmental disabilities; Intellectual disabilities; Parents; Profound intellectual and multiple disabilities; Qualitative research; Quality of life |
| تواريخ الأحداث: | Date Created: 20230603 Date Completed: 20230731 Latest Revision: 20230731 |
| رمز التحديث: | 20240628 |
| DOI: | 10.1016/j.ridd.2023.104536 |
| PMID: | 37269577 |
| قاعدة البيانات: | MEDLINE |
Full Text Finder | تدمد: | 1873-3379 |
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| DOI: | 10.1016/j.ridd.2023.104536 |