dc.creator | Palomo Toucedo, Inmaculada Concepción | es |
dc.creator | León Larios, Fátima | es |
dc.creator | Reina Bueno, María | es |
dc.creator | Vázquez-Bautista, Carmen | es |
dc.creator | Munuera Martínez, Pedro Vicente | es |
dc.creator | Domínguez-Maldonado, Gabriel | es |
dc.date.accessioned | 2020-12-10T19:39:03Z | |
dc.date.available | 2020-12-10T19:39:03Z | |
dc.date.issued | 2020-09-03 | |
dc.identifier.citation | Palomo Toucedo, I.C., León Larios, F., Reina Bueno, M., Vázquez-Bautista, C., Munuera Martínez, P.V. y Domínguez-Maldonado, G. (2020). Psychosocial Influence of Ehlers–Danlos Syndrome in Daily Life of Patients: A Qualitative Study. International Journal of Environmental Research and Public Health, 17 (17), 1-14. | |
dc.identifier.issn | 1660-4601 | es |
dc.identifier.issn | 1661-7827 | es |
dc.identifier.uri | https://hdl.handle.net/11441/103134 | |
dc.description.abstract | Ehlers–Danlos syndrome is a heterogeneous group of connective tissue
disorders causing pain, fatigue, and disabilities; it has several implications for patients who suffer
from this disease. The major clinical manifestations of EDS include joint hypermobility, skin
hyperextensibility, and generalized conjunctive tissue fragility. This research aims to explore their
perceptions and experiences about the phycological and social spheres. (2) Methods: Semistructured
interviews were carried out. Participants were encouraged to talk about issues related to their
disease by asking open-ended questions in one to one interview. The interview guide included
questions to identify the syndrome’s influence on the social and psychological life of patients
All interviews were audio recorded, fully transcribed, and analyzed using the phenomenological
theoretical framework. The method of analysis was the thematic interpreting of perspectives and
approaches. (3) Results: 31 individuals were proposed to participate in this study. Five patients
refused to participate, so a total of 26 interviews were performed. Six themes ((1) Pain and its
consequences on a daily basis; (2) The need to name the problem: the diagnosis; (3) Restructuring
leisure and social relationships; (4) Limitations due to economic conditions; (5) Psychological impact
of the disease situation; (6) Professional limitations) and four subthemes ((1) The value of partner
support; (2) The weather influence on social plans; (3) Physical exercise and illness; (4) Support
groups) emerged from the data. (4) Conclusions: This study revealed the impact of the syndrome on
the social and daily life of patients, and not only in a physical level, but also in a psychological and
social approach. These findings allow healthcare providers to know more about this disease in order
to support and give advice to patients about the changes they will have to make. | es |
dc.description.sponsorship | University of Seville “VI PLAN PROPIO DE INVESTIGACIÓN Y TRANSFERENCIA—US 2018” | es |
dc.format | application/pdf | es |
dc.format.extent | 14 | es |
dc.language.iso | eng | es |
dc.publisher | MDPI | es |
dc.relation.ispartof | International Journal of Environmental Research and Public Health | |
dc.rights | Attribution-NonCommercial-NoDerivatives 4.0 Internacional | * |
dc.rights | Attribution-NonCommercial-NoDerivatives 4.0 Internacional | * |
dc.rights.uri | http://creativecommons.org/licenses/by-nc-nd/4.0/ | * |
dc.subject | Ehlers–Danlos syndrome | es |
dc.subject | Qualitative study | es |
dc.subject | Life experiences | es |
dc.subject | Psychosocial approach | es |
dc.subject | Chronic pain | es |
dc.title | Psychosocial Influence of Ehlers–Danlos Syndrome in Daily Life of Patients: A Qualitative Study | es |
dc.type | info:eu-repo/semantics/article | es |
dcterms.identifier | https://ror.org/03yxnpp24 | |
dc.type.version | info:eu-repo/semantics/publishedVersion | es |
dc.rights.accessRights | info:eu-repo/semantics/openAccess | es |
dc.contributor.affiliation | Universidad de Sevilla. Departamento de Podología | es |
dc.contributor.affiliation | Universidad de Sevilla. Departamento de Enfermería | es |
dc.relation.publisherversion | https://doi.org/10.3390/ijerph17176425 | es |
dc.identifier.doi | 10.3390/ijerph17176425 | es |
dc.journaltitle | International Journal of Environmental Research and Public Health | es |
dc.publication.volumen | 17 | es |
dc.publication.issue | 17 | es |
dc.publication.initialPage | 1 | es |
dc.publication.endPage | 14 | es |