title: Parents of children with haemophilia at an early age: assessment of perceived stress and family functioning.
abstract: 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.
authors.affiliation: Departamento de Psiquiatría y Psicología Social, Facultad de Medicina, Universidad de Murcia, Murcia, España.
authors.forename: A
authors.initials: A
authors.lastname: Torres-Ortuño
authors.forename: R
authors.initials: R
authors.lastname: Cuesta-Barriuso
authors.forename: J
authors.initials: J
authors.lastname: Nieto-Munuera
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D006467:Hemophilia A / Q000453:epidemiology*; D002836:Hemophilia B / Q000453:epidemiology*; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D013315:Stress, Psychological; D055815:Young Adult
keywords: early age; family functioning; haemophilia; parents; stress