This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia 2020: 26(Suppl 6): 1–158. doi: 10.1111/hae.14046.SrivastavaASantagostinoEDougallAWFH Guidelines for the Management of Hemophilia, 3rd editionHaemophilia202026Suppl 6115810.1111/hae.14046Open DOISearch in Google Scholar
World Federation of Hemophilia. Report on the Annual Global Survey 2021. October 2022. Available from https://www1.wfh.org/publications/files/pdf-2324.pdf.World Federation of HemophiliaReport on the Annual Global Survey 2021October2022Available from https://www1.wfh.org/publications/files/pdf-2324.pdf.Search in Google Scholar
Available from https://elearning.wfh.org/elearning-centres/hemophilia/?_gl=1*rjb9fv*_ga_7974KH9LH5*MTc0MDc1NTU1NS4xLjEuMTc0MDc1NTU3MS4wLjAuMA.Available from https://elearning.wfh.org/elearning-centres/hemophilia/?_gl=1*rjb9fv*_ga_7974KH9LH5*MTc0MDc1NTU1NS4xLjEuMTc0MDc1NTU3MS4wLjAuMA.Search in Google Scholar
Hirayama AB, Silva AKCD, Rocha JS, Roberti MDRF. Prevalence of symptoms in hemophilia carriers in comparison with the general population: a systematic review. Hematol Transfus Cell Ther 2019; 41(4): 349–355. doi: 10.1016/j.htct.2019.02.006.HirayamaABSilvaAKCDRochaJSRobertiMDRFPrevalence of symptoms in hemophilia carriers in comparison with the general population: a systematic reviewHematol Transfus Cell Ther201941434935510.1016/j.htct.2019.02.006Open DOISearch in Google Scholar
Lewis C, Skirton H, Jones R. Can we make assumptions about the psychosocial impact of living as a carrier, based on studies assessing the effects of carrier testing? J Genet Couns 2011; 20(1): 80–97. doi: 10.1007/s10897-010-9327-8.LewisCSkirtonHJonesRCan we make assumptions about the psychosocial impact of living as a carrier, based on studies assessing the effects of carrier testing?J Genet Couns2011201809710.1007/s10897-010-9327-8Open DOISearch in Google Scholar
Ivankova NV, Creswell JW, Stick SL. Using mixed-methods sequential explanatory design: From theory to practice. Field Methods 2006; 18(1): 3–20. doi: 10.1177/1525822X05282260.IvankovaNVCreswellJWStickSLUsing mixed-methods sequential explanatory design: From theory to practiceField Methods200618132010.1177/1525822X05282260Open DOISearch in Google Scholar
Creswell JW, Creswell JD. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. 4th edn. Newbury Park: Sage; 2017.CreswellJWCreswellJDResearch Design: Qualitative, Quantitative, and Mixed Methods Approaches4th edn.Newbury ParkSage2017Search in Google Scholar
Elbatarny M, Mollah S, Grabell J, et al. Normal range of bleeding scores for the ISTH-BAT: adult and pediatric data from the merging project. Haemophilia 2014; 20(6): 831–835. doi: 10.1111/hae.12503.ElbatarnyMMollahSGrabellJNormal range of bleeding scores for the ISTH-BAT: adult and pediatric data from the merging projectHaemophilia201420683183510.1111/hae.12503Open DOISearch in Google Scholar
Punt MC, Blaauwgeers MW, Timmer MA, Welsing PMJ, Schutgens REG, van Galen KPM. Reliability and feasibility of the self-administered ISTH-Bleeding Assessment Tool. TH Open 2019; 29;3(4):e350–e355. doi: 10.1055/s-0039-3400483.PuntMCBlaauwgeersMWTimmerMAWelsingPMJSchutgensREGvan GalenKPMReliability and feasibility of the self-administered ISTH-Bleeding Assessment ToolTH Open2019293(4)e350e35510.1055/s-0039-3400483Open DOISearch in Google Scholar
Carver CS. You want to measure coping but your protocol's too long: Consider the Brief COPE. Int J Behav Med 1997; 4: 92–100. doi: 10.1207/s15327558ijbm0401_6.CarverCSYou want to measure coping but your protocol's too long: Consider the Brief COPEInt J Behav Med199749210010.1207/s15327558ijbm0401_6Open DOISearch in Google Scholar
Tang WPY, Chan CWH, Choi KC. Factor structure of the Brief Coping Orientation to Problems Experienced Inventory in Chinese (Brief-COPE-C) in caregivers of children with chronic illnesses. J Pediatr Nurs 2021; 59: 63–69. doi: 10.1016/j.pedn.2021.01.002.TangWPYChanCWHChoiKCFactor structure of the Brief Coping Orientation to Problems Experienced Inventory in Chinese (Brief-COPE-C) in caregivers of children with chronic illnessesJ Pediatr Nurs202159636910.1016/j.pedn.2021.01.002Open DOISearch in Google Scholar
Zimet GD, Dahlem NW, Zimet SG, Farley GK. The Multidimensional Scale of Perceived Social Support. Journal of Personality Assessment 1988; 52: 30–41. doi: 10.1207/s15327752jpa5201_2.ZimetGDDahlemNWZimetSGFarleyGKThe Multidimensional Scale of Perceived Social SupportJournal of Personality Assessment198852304110.1207/s15327752jpa5201_2Open DOISearch in Google Scholar
Trejos-Herrera AM, Bahamón MJ, Alarcón-Vásquez Y, Vélez JI, Vinaccia S. Validity and reliability of the Multidimensional Scale of Perceived Social Support in Colombian adolescents. Psychosocial Intervention 2018; 27(1): 56–63. doi: 10.5093/pi2018a1.Trejos-HerreraAMBahamónMJAlarcón-VásquezYVélezJIVinacciaSValidity and reliability of the Multidimensional Scale of Perceived Social Support in Colombian adolescentsPsychosocial Intervention2018271566310.5093/pi2018a1Open DOISearch in Google Scholar
Teddlie C, Tashakkori A. Foundations of Mixed Methods Research: Integrating Quantitative and Qualitative Approaches in the Social and Behavioral Sciences. Thousand Oaks, CA: Sage; 2009.TeddlieCTashakkoriAFoundations of Mixed Methods Research: Integrating Quantitative and Qualitative Approaches in the Social and Behavioral SciencesThousand Oaks, CASage2009Search in Google Scholar
Fetters MD, Tajima C.. Joint displays of integrated data collection in mixed methods research. Intl J Qual Methods 2022; 21: 1–13. doi: 10.1177/16094069221104564.FettersMDTajimaCJoint displays of integrated data collection in mixed methods researchIntl J Qual Methods20222111310.1177/16094069221104564Open DOISearch in Google Scholar
Guetterman TC, Fetters MD, Creswell JW. Integrating quantitative and qualitative results in health science mixed methods research through joint displays. Ann Fam Med 2015; 13(6): 554–561. doi: 10.1370/afm.1865.GuettermanTCFettersMDCreswellJWIntegrating quantitative and qualitative results in health science mixed methods research through joint displaysAnn Fam Med201513655456110.1370/afm.1865Open DOISearch in Google Scholar
Saviolo-Negrin N, Cristante F, Zanon E, Canclini M, Stocco D, Girolami A. Psychological aspects and coping of parents with haemophilic child: a quantitative approach. Haemophilia 1999; 5: 63–8. doi: 10.1046/j.1365-2516.1999.00213.x.Saviolo-NegrinNCristanteFZanonECancliniMStoccoDGirolamiAPsychological aspects and coping of parents with haemophilic child: a quantitative approachHaemophilia1999563810.1046/j.1365-2516.1999.00213.xOpen DOISearch in Google Scholar
von der Lippe C, Frich JC, Harris A, Solbrække KN. “It was a lot tougher than I thought It would be”. A qualitative study on the changing nature of being a hemophilia carrier. J Genet Couns 2017; 26(6): 1324–1332. doi: 10.1007/s10897-017-0112-9.von der LippeCFrichJCHarrisASolbrækkeKN“It was a lot tougher than I thought It would be”. A qualitative study on the changing nature of being a hemophilia carrierJ Genet Couns20172661324133210.1007/s10897-017-0112-9Open DOISearch in Google Scholar
Wiedebusch S, Pollmann H, Siegmund B, Munthny FA. Quality of life, psychosocial strains and coping in parents of children with haemophilia. Haemophilia 2008; 14 (5): 1014–22. doi: 10.1111/j.1365-2516.2008.01803.x.WiedebuschSPollmannHSiegmundBMunthnyFAQuality of life, psychosocial strains and coping in parents of children with haemophiliaHaemophilia200814510142210.1111/j.1365-2516.2008.01803.xOpen DOISearch in Google Scholar
Beeton K, Neal D, Watson T, Lee CA. Parents of children with haemophilia – a transforming experience. Haemophilia 2007; 13: 570–9. doi: 10.1111/j.1365-2516.2007.01494.x.BeetonKNealDWatsonTLeeCAParents of children with haemophilia – a transforming experienceHaemophilia200713570910.1111/j.1365-2516.2007.01494.xOpen DOISearch in Google Scholar
Canclini M, Saviolo-Negrin N, Zanon E, Bertoletti R, Girolami A, Pagnan A. Psychological aspects and coping in haemophilic patients: a case-control study. Haemophilia 2003; 9: 619–24. doi: 10.1046/j.1365-2516.2003.00807.xCancliniMSaviolo-NegrinNZanonEBertolettiRGirolamiAPagnanAPsychological aspects and coping in haemophilic patients: a case-control studyHaemophilia200396192410.1046/j.1365-2516.2003.00807.xOpen DOISearch in Google Scholar
Sheridan N, Thompson B, Lichten L, Coleman K, Sidonio R Jr. The emotional experience of mothers of children with haemophilia: maternal guilt, effective coping strategies and resilience within the haemophilia community. Haemophilia 2023; 29(2): 513–520. doi: 10.1111/hae.14746.SheridanNThompsonBLichtenLColemanKSidonioRJrThe emotional experience of mothers of children with haemophilia: maternal guilt, effective coping strategies and resilience within the haemophilia communityHaemophilia202329251352010.1111/hae.14746Open DOISearch in Google Scholar
Knol M, Voskuilen MA, Holterman F, KluinNeleman JC, Meijer K. Reproductive choices and obstetrical experience in Dutch carriers of haemophilia A and B. Haemophilia 2010; 17: 233–6. doi: 10.1111/j.1365-2516.2010.02351.x.KnolMVoskuilenMAHoltermanFKluinNelemanJCMeijerKReproductive choices and obstetrical experience in Dutch carriers of haemophilia A and BHaemophilia201017233610.1111/j.1365-2516.2010.02351.xOpen DOISearch in Google Scholar
Mauser Bunschoten EP, van Houwelingen JC, Visser EJS, van Dijken PJ, Kok AJ, Sixma JJ. Bleeding symptoms in carriers of hemophilia A and B. Thromb Haemost 1988; 59(3): 349–352.Mauser BunschotenEPvan HouwelingenJCVisserEJSvan DijkenPJKokAJSixmaJJBleeding symptoms in carriers of hemophilia A and BThromb Haemost1988593349352Search in Google Scholar
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(2): 219–24. doi: 10.1111/hae.12026.Myrin-WestessonLBaghaeiFFribergFThe experience of being a female carrier of haemophilia and the mother of a haemophilic childHaemophilia20131922192410.1111/hae.12026Open DOISearch in Google Scholar