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The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study
Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the pers...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Taylor & Francis
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8928810/ https://www.ncbi.nlm.nih.gov/pubmed/35309693 http://dx.doi.org/10.1080/20473869.2020.1737469 |
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author | Nieuwenhuijse, A.M. Willems, D.L. van Goudoever, J.B. Olsman, E. |
author_facet | Nieuwenhuijse, A.M. Willems, D.L. van Goudoever, J.B. Olsman, E. |
author_sort | Nieuwenhuijse, A.M. |
collection | PubMed |
description | Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They ‘sensed’ QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers. |
format | Online Article Text |
id | pubmed-8928810 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | Taylor & Francis |
record_format | MEDLINE/PubMed |
spelling | pubmed-89288102022-03-18 The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study Nieuwenhuijse, A.M. Willems, D.L. van Goudoever, J.B. Olsman, E. Int J Dev Disabil Original Articles Persons with Profound Intellectual and Multiple Disabilities (PIMD) are supported by professional caregivers for a large part of their lives. However, the perspectives of professional caregivers on good or poor Quality of Live (QoL) of persons with PIMD have hardly been explored. To explore the perspective of professional caregivers on QoL of persons with PIMD, we performed a qualitative study, conducting semi-structured interviews with eleven professional caregivers and thematically analysed them. In the interviews, these professional caregivers described examples of good and poor QoL. Good QoL was mostly described in emotional terms such as happiness, pleasure and enjoying things. Poor QoL was mostly described in physical terms such as pain, sickness and shortage of breath. The capability of persons with PIMD to influence the environment was described as an element of good QoL. Furthermore, these professional caregivers described how they assessed QoL. They ‘sensed’ QoL, they tested it (trial and error) and discussed QoL of persons with PIMD with colleagues. Participants emphasized the dependency of persons with PIMD on professional caregivers. Furthermore, these professional caregivers described feelings of failure and powerlessness if they could not assess or fulfil the needs of persons with PIMD. We conclude that these professional caregivers use their (tacit) knowledge to understand QoL of persons with PIMD. The relationship between QoL of persons with PIMD and professional caregivers needs more investigation, because of its consequences both for the persons with PIMD and the professional caregivers. Taylor & Francis 2020-03-14 /pmc/articles/PMC8928810/ /pubmed/35309693 http://dx.doi.org/10.1080/20473869.2020.1737469 Text en © 2020 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) ), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. |
spellingShingle | Original Articles Nieuwenhuijse, A.M. Willems, D.L. van Goudoever, J.B. Olsman, E. The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study |
title | The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study |
title_full | The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study |
title_fullStr | The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study |
title_full_unstemmed | The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study |
title_short | The perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study |
title_sort | perspectives of professional caregivers on quality of life of persons with profound intellectual and multiple disabilities: a qualitative study |
topic | Original Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8928810/ https://www.ncbi.nlm.nih.gov/pubmed/35309693 http://dx.doi.org/10.1080/20473869.2020.1737469 |
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