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The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy

The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this s...

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Detalles Bibliográficos
Autores principales: Mohd Nordin, Nor Azlin, Hui Shan, Eyu, Zanudin, Asfarina
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950200/
https://www.ncbi.nlm.nih.gov/pubmed/31888294
http://dx.doi.org/10.3390/ijerph16245145
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author Mohd Nordin, Nor Azlin
Hui Shan, Eyu
Zanudin, Asfarina
author_facet Mohd Nordin, Nor Azlin
Hui Shan, Eyu
Zanudin, Asfarina
author_sort Mohd Nordin, Nor Azlin
collection PubMed
description The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child’s condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.
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spelling pubmed-69502002020-01-16 The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy Mohd Nordin, Nor Azlin Hui Shan, Eyu Zanudin, Asfarina Int J Environ Res Public Health Article The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child’s condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern. MDPI 2019-12-16 2019-12 /pmc/articles/PMC6950200/ /pubmed/31888294 http://dx.doi.org/10.3390/ijerph16245145 Text en © 2019 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Mohd Nordin, Nor Azlin
Hui Shan, Eyu
Zanudin, Asfarina
The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy
title The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy
title_full The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy
title_fullStr The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy
title_full_unstemmed The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy
title_short The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy
title_sort unmet needs of parents of highly dependent children with cerebral palsy
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950200/
https://www.ncbi.nlm.nih.gov/pubmed/31888294
http://dx.doi.org/10.3390/ijerph16245145
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