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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...

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Detalles Bibliográficos
Autores principales: Gómez-Zúñiga, Beni, Pulido, Rafael, Pousada, Modesta, Armayones, Manuel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
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.
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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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