XXXVI Congreso SETH

Ponencias 27 3. Street AM, Ljung R, Lavery SA. Management of carriers and babies with haemophilia. Haemophilia 2008;14:181-7. 4. Maclean PE, Fijnvandraat K, Beijlevelt M, et al. The impact of unawa- re carriership on the clinical presentation of haemophilia. Haemophilia 2004;10:560-4. 5. World Federation of Hemophilia. Carriers and Women with Hemo- philia, Montreal: World Federation of Hemophilia; 2012. 6. Gregory M, Boddington P, Dimond R, et al. Communicating about haemophilia within the family: the importance of context and of expe- rience. Haemophilia 2007;13(2):189-98. 7. Telford K, Kralik D, Koch T. Acceptance and denial: implications for people adapting to chronic illness: literature review. J Adv Nurs 2006;55:457-64. 8. Associació Catalana de l’Hemofília. Portadoras de hemofilia, ¿Qué es necesario saber? Fundació Privada Catalana de l’Hemofília; 2009. 9. Khair K, Holland M, Pollard D. The experience of girls and young women with inherited bleeding disorders. Haemophilia 2013;19Y5Z:e276X81. 10. James AH. More than menorrhagia: a review of the obstetric and gynaecological manifestation of bleeding disorders. Haemophilia 2005;11:295X307. 11. García-Dasí M, Torres-Ortuño A, Cid-Sabatel R, et al. Practical aspects of psychological support to the patient with haemophilia from diagnosis in infancy through childhood and adolescence. Haemophilia 2016;1-10. DOI: 10.1111/hae.13018 12. Westesson LM, Sparud-Lundin C, Baghaei F, et al. Burden on Parents of Children with Haemophilia: The Impact of Sociodemographic and Child’s Medical Condition J Clin Nurs 2019;28(21-22):4077-86. DOI: 10.1111/jocn.15003.Epub 2019 13. Schwartz CE, Powell VE, Eldar-Lissai A. Measuring hemophilia care- giver burden: validation of the Hemophilia Caregiver Impact measure. Qual Life Res 2017;26(9):2551-62. DOI: 10.1007/s11136-017-1572-y 14. Osorio M, Bazán G, Hernández MC, et al. Taller para mujeres porta- doras de hemofilia. Alternativas en Psicología 2015;101-12. 15. Osorio M, Bazán RG, Hernández MC. Niveles de autoestima en portadoras mexicanas de hemofilia. Revista Psicología y Salud 2015;25(1):83-90. 16. Myrin-Westesson L, Baghaei F, Friberg F. The experience of being a female carrier of haemophilia and the mother of a haemophilic child. Haemophilia 2013;19:219-24. 17. Furmedge J, Limaa S, Monagle P, et al. ‘I don’t want to hurt him. Parents’ experiences of learning to administer clotting factor to their child. Haemophilia 2013;19(2):206-11. 18. Cassis F. Psychosocial Care for People with Hemophilia. Treatment of Haemophilia Monograph Series; 2007. 19. Balcells M, Cabré P, Grases S, et al. El niño con hemofilia y su familia. Una historia diferente. Madrid: Acción Médica; 2010. 20. García-Dasí M, Aznar JA, Jiménez-Yuste V, et al. Adherence to pro- phylaxis and quality of life in children and adolescents with severe haemophilia A. Haemophilia 2015;1-7. DOI: 10.1111/hae.12618

RkJQdWJsaXNoZXIy OTI4NTYw