If three of my brothers have ankylosing spondylitis, why does the doctor say it is not necessarily hereditary? The meaning of risk in multiplex case families with ankylosing spondylitis

dc.contributor.affiliationRheumatology Unit, Hospital General de México, Mexico City, Mexicoes_ES
dc.contributor.emailpelaezin@prodigy.net.mxes_ES
dc.creatorPeláez-Ballestas, Ingris
dc.creatorRomero-Mendoza, Martha
dc.creatorBurgos-Vargas, Rubén
dc.creator.identificador"PEBI661012MNELLN07">Peláez-Ballestas, Ingris del Pilares_ES
dc.creator.identificador"ROMM561016MDFMNR02">Romero-Mendoza, Martha Patriciaes_ES
dc.creator.identificador"http://orcid.org/0000-0003-1058-8955">Burgos-Vargas, Rubénes_ES
dc.date.accessioned2017-06-29T03:53:15Z
dc.date.accessioned2026-03-27T14:33:07Z
dc.date.available2017-06-29T03:53:15Z
dc.date.issued2015es_ES
dc.date.published2015es_ES
dc.descriptionObjective: To investigate how patients with ankylosing spondylitis and their relatives in multiplex case families understand concepts of familial aggregation, heredity and risk perceptions, and its impact on decision-making. Methods: This is a multimethod clinical investigation using field research style in 34 individuals from 10 families with 2 members with ankylosing spondylitis covering a wide spectrum of disease severity, educational level, and economical status. The narratives of patients and their relatives were obtained using clinical information, unstructured observation, and personal interviews, which were then transcribed verbatim, coded, and analyzed by three investigators. The interpretation of the textual data was based on two analysis styles, immersion/crystallization and interpretative grounded theory. Results: We identified four broad interrelated interpretive units in patient and relatives narratives: (1) familial interpretation of the disease, (2) genetic risk, (3) decision-making based on risk, and (4) patient-family/physician discourse contradiction on the meaning of heredity. Conclusions: Patient’s and their relatives interpretation of familial aggregation, HLAB27, heredity, and risk perception in relation with ankylosing spondylitis involves four broad interpretive units spanning from clinical symptoms to heredity and decisions made accordingly. Their thoughts and consequent decisions are often in contradiction with the medical knowledge on the role of genetic factors in ankylosing spondylitis.
dc.description.monthMares_ES
dc.identifier2759es_ES
dc.identifier.citationMercedes Simoni Nieveses_ES
dc.identifier.doi10.1177/1742395315601413es_ES
dc.identifier.eissn1745-9206es_ES
dc.identifier.issn1742-3953es_ES
dc.identifier.numero1es_ES
dc.identifier.organizacionInstituto Nacional de Psiquiatría Ramón de la Fuente Muñizes_ES
dc.identifier.paginacion58-70es_ES
dc.identifier.placeEstados Unidoses_ES
dc.identifier.urihttps://doi.org/10.1177/1742395315601413es_ES
dc.identifier.urihttps://repositorio.inprf.gob.mx/handle/123456789/4608
dc.identifier.volumen12es_ES
dc.language.isoenges_ES
dc.publisherSage Publicationses_ES
dc.relation12(1):58-70es_ES
dc.relation.jnabreviadoCHRONIC ILLNes_ES
dc.relation.journalChronic Illnesses_ES
dc.rightsAcceso Cerradoes_ES
dc.subject.kwAnkylosing spondylitis
dc.subject.kwFamilial aggregation
dc.subject.kwPerception
dc.subject.kwMedical anthropology
dc.subject.kwHLA-B27
dc.subject.meshAdolescentes_ES
dc.subject.meshAdultes_ES
dc.subject.meshAgedes_ES
dc.subject.meshDecision Makinges_ES
dc.subject.meshFamilyes_ES
dc.subject.meshGenetic Predisposition to Diseasees_ES
dc.subject.meshHLA-B27 Antigen/geneticses_ES
dc.subject.meshHumanses_ES
dc.subject.meshMalees_ES
dc.subject.meshMiddle Agedes_ES
dc.subject.meshPedigreees_ES
dc.subject.meshPhysician-Patient Relationses_ES
dc.subject.meshRisk Assessmentes_ES
dc.subject.meshRisk Factorses_ES
dc.subject.meshSiblingses_ES
dc.subject.meshSpondylitis, Ankylosing/geneticses_ES
dc.subject.meshSpondylitis, Ankylosing/psychologyes_ES
dc.subject.meshYoung Adultes_ES
dc.titleIf three of my brothers have ankylosing spondylitis, why does the doctor say it is not necessarily hereditary? The meaning of risk in multiplex case families with ankylosing spondylitises_ES
dc.typeArtículoes_ES

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