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The Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences

dc.contributor.authorGranero-Molina J.
dc.contributor.authorSánchez-Hernández F.
dc.contributor.authorFernández-Sola C.
dc.contributor.authorJiménez-Lasserrotte M.D.M.
dc.contributor.authorAntequera-Raynal L.H.
dc.contributor.authorHernández-Padilla J.M.
dc.date.accessioned2020-09-02T22:19:28Z
dc.date.available2020-09-02T22:19:28Z
dc.date.issued2020
dc.identifier10.1177/1054773818780102
dc.identifier.citation29, 2, 117-126
dc.identifier.issn10547738
dc.identifier.urihttps://hdl.handle.net/20.500.12728/4749
dc.descriptionThe aim of this study was to understand the experiences of family caregivers in the process of diagnosing hereditary angioedema. An interpretive and qualitative research methodology based on Gadamer’s philosophical hermeneutics was carried out. Data collection took place between May 2015 and August 2016 and included a focus group and in-depth interviews with 16 family caregivers. Two themes define the experiences of family caregivers: “Family life focuses on identifying the problem” and “Discovering and coping with a complex diagnosis.” The process of diagnosis generates fear, anxiety, uncertainty, and incomprehension. Family caregivers are the main support for patients diagnosed with hereditary angioedema. As they share in the patients’ suffering, they need a diagnosis to be established to be able to cope with the disease and offer support. Family health nurses can contribute to improving the coping process in this phase of the disease. © The Author(s) 2018.
dc.language.isoen
dc.publisherSAGE Publications Inc.
dc.subjectburden of illness
dc.subjectfamily caregivers
dc.subjecthereditary angioedema
dc.subjectphenomenology
dc.subjectrare diseases
dc.titleThe Diagnosis of Hereditary Angioedema: Family Caregivers’ Experiences
dc.typeArticle


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