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The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear
In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The res...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8038217/ https://www.ncbi.nlm.nih.gov/pubmed/33918362 http://dx.doi.org/10.3390/ijerph18073724 |
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author | Gómez-Zúñiga, Beni Pulido, Rafael Pousada, Modesta Armayones, Manuel |
author_facet | Gómez-Zúñiga, Beni Pulido, Rafael Pousada, Modesta Armayones, Manuel |
author_sort | Gómez-Zúñiga, Beni |
collection | PubMed |
description | In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The research aims to explore how parents who look after children with a rare disease experience their role as caregivers and how they assimilate their role identity in this task. Semi-structured interviews were performed with parents of 10 children, and a qualitative data analysis was conducted using grounded theory. We have identified ten main categories using a grounded theory approach: stress, disorientation, insecurity, isolation, faith, trust, attention, communication with professionals, private proactivity and public proactivity. Our results also show that when parents perceive a greater burden due to looking after a child with a rare disease, the result is a change in the usual parental role. In our contribution, we offer a general outline of how parents build a role identity centred on caring for a child with a rare disease. We posit that this role identity is the outcome of the parents’ success or failure in gradually overcoming fear through love. We have conceptualized this process as navigating between love and fear. |
format | Online Article Text |
id | pubmed-8038217 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-80382172021-04-12 The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear Gómez-Zúñiga, Beni Pulido, Rafael Pousada, Modesta Armayones, Manuel Int J Environ Res Public Health Article In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The research aims to explore how parents who look after children with a rare disease experience their role as caregivers and how they assimilate their role identity in this task. Semi-structured interviews were performed with parents of 10 children, and a qualitative data analysis was conducted using grounded theory. We have identified ten main categories using a grounded theory approach: stress, disorientation, insecurity, isolation, faith, trust, attention, communication with professionals, private proactivity and public proactivity. Our results also show that when parents perceive a greater burden due to looking after a child with a rare disease, the result is a change in the usual parental role. In our contribution, we offer a general outline of how parents build a role identity centred on caring for a child with a rare disease. We posit that this role identity is the outcome of the parents’ success or failure in gradually overcoming fear through love. We have conceptualized this process as navigating between love and fear. MDPI 2021-04-02 /pmc/articles/PMC8038217/ /pubmed/33918362 http://dx.doi.org/10.3390/ijerph18073724 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/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 (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Gómez-Zúñiga, Beni Pulido, Rafael Pousada, Modesta Armayones, Manuel The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear |
title | The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear |
title_full | The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear |
title_fullStr | The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear |
title_full_unstemmed | The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear |
title_short | The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear |
title_sort | role of parent/caregiver with children affected by rare diseases: navigating between love and fear |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8038217/ https://www.ncbi.nlm.nih.gov/pubmed/33918362 http://dx.doi.org/10.3390/ijerph18073724 |
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