title: Supporting the need for home care by mothers of children with hemophilia.
abstract: This research is a descriptive study that took place in Turkey and was intended to determine the difficulties experienced by mothers of children with hemophilia in maintaining their care at home and establishing appropriate interventions. Research data were collected using a survey prepared by the researchers after reviewing the existing literature. The survey contained 2 sections: (a) questions about the mothers' sociodemographic data and (b) 5 questions about the difficulties that mothers with hemophiliac children experience. Mothers were observed to have not received education about accidents and first aid and were afraid that their child would have an accident (55%); they experienced difficulty finding medications (75%); they felt they needed healthcare personnel during medication administration (85%); and they were sad that their child was ill (80%). Pediatric haematology nurses should strive to educate mothers with hemophiliac children about the disease and how to deal with accidents, first aid, and medication administration; home care services should be organized and made available for all hemophiliac children and their families.
authors.affiliation: Ödemis, School of Nursing, Ege University, Izmir, Turkey. sibel.akduman@ege.edu.tr
authors.forename: Sibel
authors.initials: S
authors.lastname: Ergün
authors.forename: Esma
authors.initials: E
authors.lastname: Sülü
authors.forename: Zümrüt
authors.initials: Z
authors.lastname: Başbakkal
mesh_terms: D000328:Adult; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D019988:Children with Disabilities / Q000706:statistics & numerical data; D005260:Female; D006467:Hemophilia A / Q000175:diagnosis / Q000451:nursing*; D006699:Home Care Services / Q000458:organization & administration*; D006801:Humans; D007223:Infant; D008134:Long-Term Care; D008297:Male; D009034:Mother-Child Relations; D020380:Needs Assessment; D011788:Quality of Life; D012657:Self-Help Groups / Q000458:organization & administration*; D014421:Turkey; D055815:Young Adult