RT Journal Article
T1 The Diagnosis of Hereditary Angioedema: Family Caregivers' Experiences.
A1 Granero-Molina, José
A1 Sánchez-Hernández, Francisco
A1 Fernández-Sola, Cayetano
A1 Jiménez-Lasserrotte, María Del Mar
A1 Antequera-Raynal, Laura Helena
A1 Hernández-Padilla, José Manuel
K1 burden of illness
K1 family caregivers
K1 hereditary angioedema
K1 phenomenology
K1 rare diseases
AB The 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.
YR 2018
FD 2018-06-04
LK http://hdl.handle.net/10668/12540
UL http://hdl.handle.net/10668/12540
LA en
DS RISalud
RD Apr 6, 2025