Por favor, use este identificador para citar o enlazar este ítem: http://hdl.handle.net/10609/136906
Título : The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear
Autoría: Gómez Zúñiga, Benigna
Pulido Moyano, Rafael Álvaro  
Pousada, Modesta  
Armayones, Manuel  
Otros: Universitat Oberta de Catalunya
Universidad de Almería
Citación : 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
Resumen : 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.
Palabras clave : caregiver
parent
rare disease
qualitative research
DOI: 10.3390/ijerph18073724
Tipo de documento: info:eu-repo/semantics/article
Fecha de publicación : 2-abr-2021
Licencia de publicación: http://creativecommons.org/licenses/by/3.0/es/  
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