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Evaluation of the parents' anxiety levels before and after the diagnosis of their child with a rare genetic disease: the necessity of psychological support

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dc.contributor.authorKolemen, Ayse B.
dc.contributor.authorAkyuz, Enes
dc.contributor.authorTOPRAK, ALİ
dc.contributor.authorDeveci, Erdem
dc.contributor.authorYEŞİL SAYIN, Gözde
dc.contributor.institutionauthorAKYÜZ, ENES
dc.contributor.institutionauthorTOPRAK, ALİ
dc.contributor.institutionauthorDEVECİ, ERDEM
dc.date.accessioned2021-10-12T20:59:15Z
dc.date.available2021-10-12T20:59:15Z
dc.date.issued2021-09-01T00:00:00Z
dc.description.abstractBackground: The diagnosis of the rare genetic diseases has great importance in treating multisystemic conditions, preventing potential complications, and estimating disease risk for family members. The duration of obtaining genetic test results is varies. The demand to learn the diagnosis of a possible untreatable illness involves a struggle between uncertainty and a lifetime chronic disease. The current uncertainty of their child's condition and the long wait for a diagnosis may increase the parents' anxiety level and cause difficulties in the continuation of diagnostic procedures in some families. This study aimed to investigate the prediagnosis and postdiagnosis anxiety levels of parents who have a child with a rare genetic disease. Method: The parents in this study, mothers or fathers, admitted their children to the Bezmialem Vakıf University Medical Genetics Clinic due to a suspected rare genetic disease (n = 40). Researchers created "The Sociodemographic Questionnaire" and used it to analyze the parents' sociodemographic status. In addition, they used the State-Trait Anxiety Inventory (STAI) to determine the anxiety levels of the parents. Results: The state anxiety levels of parents decreased significantly after learning the diagnosis. However, there was no statistically significant decrease observed in trait anxiety levels. Conclusion: Data from this study revealed that informing parents about their child's disease and properly explaining to them the expected difficulties might help to reduce their anxiety levels. Psychological support for parents is necessary to reduce their long-term stress, thus increasing the patient's compliance with treatment.
dc.identifier.doi10.1186/s13023-021-02046-2
dc.identifier.pubmed34583726
dc.identifier.scopus85115848912
dc.identifier.urihttp://hdl.handle.net/20.500.12645/29555
dc.identifier.wosWOS:000701047100003
dc.rightsinfo:eu-repo/semantics/openAccess
dc.subjectAnxiety
dc.subjectParents
dc.subjectPsychological support
dc.subjectRare genetic disease
dc.subjectSTAI
dc.titleEvaluation of the parents' anxiety levels before and after the diagnosis of their child with a rare genetic disease: the necessity of psychological support
dc.typeArticle
dspace.entity.typePublication
local.avesis.id5196120f-c9da-4fe6-9e1f-b7e5bc69acc4
local.publication.isinternational1
relation.isAuthorOfPublication6a463e8f-3227-4821-9a3c-9430310fc671
relation.isAuthorOfPublicationdbd19639-3d50-40a5-9a13-eb615691f6e4
relation.isAuthorOfPublication0712bba5-3f1b-4168-beaf-fce7c4ac376f
relation.isAuthorOfPublication.latestForDiscovery6a463e8f-3227-4821-9a3c-9430310fc671
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