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Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs

The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addr...

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Detalles Bibliográficos
Autores principales: Geuze, Liesbeth, Goossensen, Anne
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8252404/
https://www.ncbi.nlm.nih.gov/pubmed/34263011
http://dx.doi.org/10.1177/23333936211028170
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author Geuze, Liesbeth
Goossensen, Anne
author_facet Geuze, Liesbeth
Goossensen, Anne
author_sort Geuze, Liesbeth
collection PubMed
description The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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spelling pubmed-82524042021-07-13 Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs Geuze, Liesbeth Goossensen, Anne Glob Qual Nurs Res Developmental Disability and Care Work The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving. SAGE Publications 2021-06-30 /pmc/articles/PMC8252404/ /pubmed/34263011 http://dx.doi.org/10.1177/23333936211028170 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Developmental Disability and Care Work
Geuze, Liesbeth
Goossensen, Anne
Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs
title Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs
title_full Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs
title_fullStr Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs
title_full_unstemmed Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs
title_short Exploring the Experiences of Dutch Parents Caring for Children with Profound Intellectual and Multiple Disabilities: A Thematic Analysis of Their Blogs
title_sort exploring the experiences of dutch parents caring for children with profound intellectual and multiple disabilities: a thematic analysis of their blogs
topic Developmental Disability and Care Work
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8252404/
https://www.ncbi.nlm.nih.gov/pubmed/34263011
http://dx.doi.org/10.1177/23333936211028170
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