Parents of children with haemophilia at an early age: assessment of perceived stress and family functioning

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Parents of children with haemophilia at an early age: assessment of perceived stress and family functioningA. Torres-Ortuño1,*, R. Cuesta-Barriuso2 andJ. Nieto-Munuera1Article first published online: 20 AUG 2014

DOI: 10.1111/hae.12471

© 2014 John Wiley & Sons Ltd

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HaemophiliaEarly View (Online Version of Record published before inclusion in an issue)

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How to CiteTorres-Ortuño, A., Cuesta-Barriuso, R. and Nieto-Munuera, J. (2014), Parents of children with haemophilia at an early age: assessment of perceived stress and family functioning. Haemophilia. doi: 10.1111/hae.12471

Author Information1

Departamento de Psiquiatría y Psicología Social, Facultad de Medicina, Universidad de Murcia, Murcia, España

2

Grado de Fisioterapia, Departamento de Ciencias de la Salud, Facultad de Ciencias de la Salud, UCAM-Universidad Católica San Antonio de Murcia, Murcia, España

* Correspondence: Ana Torres-Ortuño, PhD., Departamento de Psiquiatría y Psicología Social. Facultad de Medicina, Campus de Espinardo s/n. Universidad de Murcia, 30100-Murcia, Spain.
Tel.: +34 868 887170; fax: +34 868 884150;
e-mail: atorres.ortuno@gmail.com

Publication HistoryArticle first published online: 20 AUG 2014Manuscript Accepted: 27 APR 2014 SEARCH Search Scope All contentPublication titlesIn this journalIn this issue Search String Advanced >Saved Searches > SEARCH BY CITATION Volume: Issue: Page: ARTICLE TOOLSGet PDF (107K)Save to My ProfileE-mail Link to this ArticleExport Citation for this ArticleGet Citation AlertsRequest Permissions AbstractArticleReferencesCited By View Full Article (HTML) Enhanced Article (HTML) Get PDF (107K) Keywords:early age;family functioning;haemophilia;parents;stressSummary

Haemophilia is a chronic disease that requires a multidisciplinary approach for proper management and control of its clinical manifestations. The perception and management of parents of children with haemophilia can be affected by stressful situations as a result of treatment or disease progression. The aim of this study was to evaluate the perception of stress and family functioning in parents of children with haemophilia 1–7 years. This is an observational clinical study involving 49 parents of children with haemophilia 1–7 years who attended the VIII Workshop for Parents of Children with haemophilia, organized by the Spanish Federation of Hemophilia in La Charca, Murcia (Spain). After obtaining parental consent, the questionnaires was applied to them, FACES III (family functioning) and Pediatric Inventory for Parents (perceived stress), and a record of data on the clinical characteristics and treatment. Significant differences in the perception of stressors by gender of parents were found. A family history of haemophilia, the use of port-a-cath, inhibitor development and gender of the parents were the descriptive variables most correlated with dependents variables. These variables, together with the type of haemophilia affect significantly in the parental stress and family functioning. Parents have difficulty adjusting to disease management, perceiving many stressors. Gender and family history, can hinder the proper compliance with treatments, reducing its effectiveness.

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