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Title: | The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear |
Author: | Gómez Zúñiga, Benigna Pulido Moyano, Rafael Álvaro Pousada, Modesta Armayones, Manuel |
Others: | Universitat Oberta de Catalunya Universidad de Almería |
Citation: | Gómez-Zúñiga, B., Pulido, R., Pousada, M., & Armayones, M. (2021). The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear. International Journal of Environmental Research and Public Health, 18(7), 3724. MDPI AG. Retrieved from http://dx.doi.org/10.3390/ijerph18073724 |
Abstract: | 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. |
Keywords: | caregiver parent rare disease qualitative research |
DOI: | 10.3390/ijerph18073724 |
Document type: | info:eu-repo/semantics/article |
Issue Date: | 2-Apr-2021 |
Publication license: | http://creativecommons.org/licenses/by/3.0/es/ |
Appears in Collections: | Articles Articles cientÍfics |
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File | Description | Size | Format | |
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The Role of ParentCaregiver with Children Affected by Rare Diseases. Navigating between Love and Fear.pdf | 2,93 MB | Adobe PDF | View/Open |
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