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dc.contributor.authorGómez-Zúñiga, Beni
dc.contributor.authorPulido, Rafael
dc.contributor.authorPousada, Modesta
dc.contributor.authorArmayones, Manuel
dc.date.accessioned2021-04-19T09:10:59Z
dc.date.available2021-04-19T09:10:59Z
dc.date.issued2021-04-02
dc.identifier.issn1660-4601
dc.identifier.urihttp://hdl.handle.net/10835/10494
dc.description.abstractIn 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.es_ES
dc.language.isoenes_ES
dc.publisherMDPIes_ES
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 Internacional*
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/*
dc.subjectcaregiveres_ES
dc.subjectparentes_ES
dc.subjectrare diseasees_ES
dc.subjectchronic diseasees_ES
dc.subjectqualitative researches_ES
dc.subjectrole experiencees_ES
dc.titleThe Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Feares_ES
dc.typeinfo:eu-repo/semantics/articlees_ES
dc.relation.publisherversionhttps://www.mdpi.com/1660-4601/18/7/3724es_ES
dc.rights.accessRightsinfo:eu-repo/semantics/openAccesses_ES


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Attribution-NonCommercial-NoDerivatives 4.0 Internacional
Except where otherwise noted, this item's license is described as Attribution-NonCommercial-NoDerivatives 4.0 Internacional