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Vollständiger Titel
PSICOLOGIA DELLA SALUTE
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Verlag
FrancoAngeli
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ISSN
1721-0321 (Gedruckte Zeitschrift)
1972-5167 (Online-Zeitschrift)
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Nummer der Ausgabe
2
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Andere Beschreibung der Ausgabe
2
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Erscheinungsdatum der Ausgabe
2023
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Vollständiger Titel
Challenges and worries in life stories of women with bleeding disorders
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Von (Autor)
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Erste Seite
118
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Letzte Seite
134
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Sprache des Textes
Englisch
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Erscheinungsdatum
2023/06
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Copyright
2023 FrancoAngeli srl
Abstract/Hauptbeschreibung
Women with bleeding disorders have rarely been studied. Recently, thanks to the advancement in treatment options and the recognition that women can also suffer from haemo-philia, new research lines have been developed. This study investigated the experiences of women affected by bleeding disorders (patients, healthy or symptomatic carriers), specifically focussing on disease diagnosis and management in daily life, relational issues, and reproductive options. Age, family history, educational qualification and religiosity were also considered. Thirty-two women were interviewed, and their narratives were analysed with lexical-metric and qualitative content analysis. The results showed some key themes, which refer to cognitive, affective and behavioural responses to the disease. They included both sex-neutral and female-specific contents, offering a new reading of the phenomenon. Although the aware-ness of female bleeding disorders has increased in recent years, sick women stressed late di-agnosis paths and symptom underestimations, while female carriers discussed psychosexual issues and motherhood choices, with related implications on physical and psychological well-being, and relational life. Alongside commonalities, some differences emerged depending on women's socio-cultural situations. Overall, they suggested the importance of developing early patient-centred psycho-educational paths in order to tailor interventions to specific women's needs, promote disease and self-acceptance, and enhance effective management.
Zitierungen des
10.3280/PDS2023-002008
Unstructured Zitierung
Abbonizio F., Arcieri R., Associazione Italiana Centri Emofilia (AICE) & Giampaolo A. (2020). Registro Nazionale Coagulopatie Congenite. Rapporto 2018, Rapporti ISTISAN 20/14.
Unstructured Zitierung
Arya S., Wilton P., Page D., Boma‐Fischer L., Floros G., Winikoff R., ... & Sholzberg M. (2020). “Everything was blood when
it comes to me”: Understanding the lived experiences of women with inherited bleeding disorders. Journal of Thrombosis and
Haemostasis, 18(12), 3211-3221.
https://doi.org/10.1111/jth.15102
Unstructured Zitierung
Brigati R. & Emiliani F., eds. (2013). Vite normali: storia, realtà e immaginario dell’emofilia. Bologna: il Mulino.
Unstructured Zitierung
Byams,V. R., Kouides P. A., Kulkarni R., Baker J. R., Brown D. L., Gill J. C., ... & Haemophilia Treatment Centres Network
Investigators (2011). Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment
Centres. Haemophilia, 17, 6-13.
https://doi.org/10.1111/j.1365-2516.2011.02558.x
Unstructured Zitierung
Cassis F. R. M. Y. (2007). Psychosocial care for people with hemophilia. Treatment of hemophilia, 44, 1-12.
Unstructured Zitierung
Chaudhury A., Sidonio Jr R., Jain N., Tsao E., Tymoszczuk J., Oviedo Ovando M. & Kulkarni R. (2021). Women and girls with
haemophilia and bleeding tendencies: outcomes related to menstruation, pregnancy, surgery and other bleeding episodes from
a retrospective chart review. Haemophilia, 27(2), 293-304.
https://doi.org/10.1111/hae.14232
Unstructured Zitierung
Djambas Khayat C., Gouider E., von Mackensen S. & Abdul Kadir R. (2020). Heavy menstrual bleeding in women with inherited
bleeding disorders. Haemophilia, 26, 16-19.
https://doi.org/10.1111/hae.13888
Unstructured Zitierung
d’Oiron R., O’Brien S. & James A. H. (2021). Women and girls with haemophilia: lessons learned. Haemophilia, 27, 75-81.
https://doi.org/10.1111/hae.14094
Unstructured Zitierung
Dunn N. F. (2011). The long‐term psychological management of women and girls with inherited bleeding disorders. Haemophilia,
17, 38-41.
https://doi.org/10.1111/j.1365-2516.2011.02564.x
Unstructured Zitierung
Flick U. (2000). Episodic interviewing. In Bauer M. W. & Gaskell G., eds., Qualitative researching with text, image and sound
(pp. 75-92). London, England: Sage.
https://doi.org/10.4135/9781849209731.n5
Unstructured Zitierung
Hermans C. & Kulkarni R. (2018). Women with bleeding disorders. Haemophilia, 24, 29-36.
https://doi.org/10.1111/hae.13502
Unstructured Zitierung
James A. H. (2010). Women and bleeding disorders. Haemophilia, 16, 160-167.
https://doi.org/10.1111/j.1365-2516.2010.02315.x
Unstructured Zitierung
Khair K., Holland M. & Pollard D. (2013). The experience of girls and young women with inherited bleeding disorders. Haemophilia,
19(5), e276-e281.
https://doi.org/10.1111/hae.12155
Unstructured Zitierung
Khair, K., Pollard, D., Steadman, L., Jenner, K., & Chaplin, S. (2022). The views of women with bleeding disorders: Results
from the Cinderella study. Haemophilia, 28(2), 316-325.
https://doi.org/10.1111/hae.14514
Unstructured Zitierung
Mauser‐Bunschoten E. P., Kadir R. A., Laan E. T., Elfvinge P., Haverman L., Teela L., ... & van Galen K. P. (2021). Managing
women‐specific bleeding in inherited bleeding disorders: A multidisciplinary approach. Haemophilia, 27(3), 463-469.
https://doi.org/10.1111/hae.14221
Unstructured Zitierung
Miller R. (1999). Counselling about diagnosis and inheritance of genetic bleeding disorders: haemophilia A and B. Haemophilia,
5(2), 77-83.
https://doi.org/10.1046/j.1365-2516.1999.00288.x
Unstructured Zitierung
Noone D., Skouw‐Rasmussen N., Lavin M., van Galen K. P. & Kadir R. A. (2019). Barriers and challenges faced by women with
congenital bleeding disorders in Europe: results of a patient survey conducted by the European Haemophilia Consortium. Haemophilia,
25(3), 468-474.
https://doi.org/10.1111/hae.13722
Unstructured Zitierung
Peyvandi F., Garagiola I. & Mortarino M. (2011). Prenatal diagnosis and preimplantation genetic diagnosis: novel technologies
and state of the art of PGD in different regions of the world. Haemophilia, 17, 14-17.
https://doi.org/10.1111/j.1365-2516.2011.02559.x
Unstructured Zitierung
Presky K. O. & Kadir R. A. (2020). Women with inherited bleeding disorders–Challenges and strategies for improved care. Thrombosis
Research, 196, 569-578.
https://doi.org/10.1016/j.thromres.2019.07.004
Unstructured Zitierung
Ratinaud P. & Marchand P. (2012). Application de la méthode ALCESTE à de «gros» corpus et stabilité des «mondes lexicaux»: analyse du «CableGate» avec IRaMu- TeQ. In Actes des 11eme Journées internationales d’Analyse statistique des Données Textuelles (pp. 835-844). Liège, Belgique.
Unstructured Zitierung
Rauch A., Valentino L. A., Mills K., Witkop M. L., Santaella M. E., DiMichele D., ... & Susen S. (2022). Big picture initiatives
in bleeding disorders. Haemophilia, 28, 53-60.
https://doi.org/10.1111/hae.14532
Unstructured Zitierung
Reinert M. (1983). Une méthode de classification descendante hiérarchique: aplication à l’analyse lexical par contexte. Le Cahiers de l’Analyse des Données, 4, 471-484.
Unstructured Zitierung
Riccardi F., Coppola A., Rivolta G. F., Matichecchia A., Quintavalle G., Biasoli C., ... & Tagliaferri A. (2022). The effect
of carriers’ reproductive choices and pregnancy history on sporadic severe haemophilia: A 20‐year retrospective study through
a regional registry. Haemophilia, 28(2), 308-315.
https://doi.org/10.1111/hae.14490
Unstructured Zitierung
Robinson W. D., Jones A. C. & McPhee D. P. (2020). Living with a rare chronic illness: A phenomenological, systemic examination
of hemophilia complicated by an inhibitor. The American Journal of Family Therapy, 48(3), 250-270.
https://doi.org/10.1080/01926187.2019.1708831
Unstructured Zitierung
Rodeghiero F., Tosetto A. & Castaman G. (2007). How to estimate bleeding risk in mild bleeding disorders. Journal of Thrombosis
and Haemostasis, 5, 157-166.
https://doi.org/10.1111/j.1538-7836.2007.02520.x
Unstructured Zitierung
Sanigorska, A., Chaplin, S., Holland, M., Khair, K., & Pollard, D. (2022). The lived experience of women with a bleeding disorder:
A systematic review. Research and Practice in Thrombosis and Haemostasis, 6(1), e12652.
https://doi.org/10.1002/rth2.12652
Unstructured Zitierung
Ulker K. & Kivrak Y. (2016). The effect of information about gynecological examination on the anxiety level of women applying
to gynecology clinics: A prospective, randomized, controlled study. Iranian Red Crescent Medical Journal, 18(6).
https://doi.org/10.5812/ircmj.23864
Unstructured Zitierung
van Galen K., Lavin M., Skouw‐Rasmussen N., Fischer K., Noone D., Pollard D., ... & European Haemophilia Consortium (EHC)
and the European Association for Haemophilia and Allied Disorders (EAHAD). (2021). European principles of care for women and
girls with inherited bleeding disorders. Haemophilia, 27(5), 837-847.
https://doi.org/10.1111/hae.14379
Unstructured Zitierung
Von Mackensen S. (2011). Quality of life in women with bleeding disorders. Haemophilia, 17, 33-37.
https://doi.org/10.1111/j.1365-2516.2011.02563.x