The Effect of Family Centered Care Model on Caregivers of Children with Hemophilia

Abstract

Hemophilia is one of the most common serious congenital coagulation factor deficiency diseases characterized by decreased function or absence of factor VIII or factor IX that is associated with significant morbidity and mortality. Aim: the current study aimed to evaluate the effect of family centered care model on caregivers of children with hemophilia. Design: A quasi-experimental research design (one group pre-posttest) was used. Setting: the study was conducted at inpatient department and outpatient clinic in Badr University Hospitals affiliated to Helwan University Hospitals and Mustafa Hassan pediatric Hospital affiliated to Fayoum University Hospitals. Sample: the study involved 60 children and their accompanying caregivers suffering from hemophilia disease. Tool: consists of four tools to assess: I: A structured interviewing questionnaire sheet to assess caregivers’ knowledge regarding hemophilia disease (one group pre/posttest). II: Observational checklist to assess caregivers' reported practice regarding care of their children with hemophilia. III:  caregiver's coping patterns, IV: The Family-Centered Care (FCC) scale for caregivers. Results: the current results referred that there was statistically significant difference between family centered care scale and their total knowledge and their total practices regarding hemophilia pre and post intervention. Also, there were statistically significant a positive correlation between their total knowledge, their total practices, their total coping and family centered care scale. Conclusion: the present study concluded that there was a positive effect of implementation of model on improving knowledge, practices and coping pattern of the studied caregivers. Recommendations: encourage family centered care programs periodically for caregivers having children with hemophilia to help them improve care for their children and reduce complications of the disease.