Identity and social challenges for persons with bleeding disorders: a gender and sex comparative approach
By: Plata S. Diesen and Lisbet Grut
References
- Barlow
, J. H., J., and D. R.. 2007. “ Living with Haemophilia and Von Willebrand's: A Descriptive Qualitative Study.” Patient Education and Counseling( 3): 235– 242. doi: 10.1016/j.pec.2007.06.006. - Barlow
, J. H., J., D. R., and M.. 2007. “ Information and Self-Management Needs of People Living with Bleeding Disorders: A Survey.” Haemophilia( 3): 264– 270. doi: 10.1111/j.1365-2516.2007.01444.x. - Beeton
, K., D., and C.. 2005. “ An Exploration of Health-Related Quality of Life in Adults with Haemophilia – A Qualitative Perspective.” Haemophilia( 2): 123– 132. doi: 10.1111/j.1365-2516.2005.01077.x. - Berglund
, B., A.-C., and I.. 2010. “ Dignity not Fully Upheld when Seeking Health Care: Experiences Expressed by Individuals Suffering from Ehlers-Danlos Syndrome.” Disability and Rehabilitation( 1): 1– 7. doi: 10.3109/09638280903178407. - Bourdieu
, P.. “ The Forms of Capital.” In Handbook of Theory and Research for the Sociology of Education, edited by J., 241– 258. London : Greenwood. - Bury
, M. 2005. Health and Illness. Cambridge : Polity. - Butler
, J. 1999. Gender Trouble: Feminism and the Subversion of Identity. New York : Routledge. - Cassis
, F. R., F., A., and A.. 2012. “ Psychosocial Aspects of Haemophilia: A Systematic Review of Methodologies and Findings.” Haemophilia( 3): e101– e114. doi: 10.1111/j.1365-2516.2011.02683.x. - Centre for Rare Disorders
. 2008. Håndbok for blødere. http://www.sjeldnediagnoser.no/docs/PDF/09_Bloederhaandbok_web.pdf - Coles
, T.. “ Negotiating the Field of Masculinity: The Production and Reproduction of Multiple Dominant Masculinities.” Men and Masculinities( 1): 30– 44. doi: 10.1177/1097184x07309502. - Connell
, R. W.. Masculinities. Cambridge : Polity Press. - Connell
, R. W.. The Men and the Boys. Cambridge : Polity. - Connell
, R. W.. “ Gender, Health and Theory: Conceptualizing the Issue, in Local and World Perspective.” Social Science and Medicine( 11): 1675– 1683. doi: http://dx.doi.org/10.1016/j.socscimed.2011.06.006. doi: 10.1016/j.socscimed.2011.06.006 - De Visser
, R. O., J. A., and E. J.. 2009. “ ‘That's Not Masculine’: Masculine Capital and Health-Related Behaviour.” Journal of Health Psychology( 7): 1047– 1058. doi: 10.1177/1359105309342299. - Diesen
, P. S., I., L., and B. F.. 2014. “ Betwixt and Between Being Healthy and Ill: The Stigma Experienced by Young Adults with Phenylketonuria.” Scandinavian Journal of Disability Research( 4): 321– 334. doi: 10.1080/15017419.2014.941003. - Di Michele
, D. M., C., J. M., Q., L. M., and A.. 2014. “ Severe and Moderate Haemophilia A and B in US Females.” Haemophilia( 2): e136– e143. doi: 10.1111/hae.12364. - Elander
, J.. “ A Review of Evidence About Behavioural and Psychological Aspects of Chronic Joint Pain Among People with Haemophilia.” Haemophilia( 2): 168– 175. doi: 10.1111/hae.12291. - Elander
, J., G., K., and J.. 2009. “ An Assessment of the Relative Influence of Pain Coping, Negative Thoughts About Pain, and Pain Acceptance on Health-Related Quality of Life Among People with Hemophilia.” Pain( 1–2): 169– 175. doi: 10.1016/j.pain.2009.06.004. - Garland-Thomson
, R.. “ Misfits: A Feminist Materialist Disability Concept.” Hypatia( 3): 591– 609. doi: 10.1111/j.1527-2001.2011.01206.x. - Giddens
, A. 1991. Modernity and Self-Identity: Self and Society in the Late Modern Age. Cambridge : Polity Press. - Gomis
, M., F., J. E., L. M., and J. A.. 2009. “ Exercise and Sport in the Treatment of Haemophilic Patients: A Systematic Review.” Haemophilia( 1): 43– 54. doi: 10.1111/j.1365-2516.2008.01867.x. - Grut
, L., and M. H.. 2012. “ Facing Ignorance: People with Rare Disorders and Their Experiences with Public Health and Welfare Services.” Scandinavian Journal of Disability Research( 1): 20– 32. doi: 10.1080/15017419.2011.645870. - Heijnen
, L.. “ The Role of Rehabilitation and Sports in Haemophilia Patients with Inhibitors.” Haemophilia( Suppl. 6): 45– 51. doi: 10.1111/j.1365-2516.2008.01889.x. - Iannone
, M., L., A., H., M., K., and A. T.. 2012. “ Prevalence of Depression in Adults with Haemophilia.” Haemophilia( 6): 868– 874. doi: 10.1111/j.1365-2516.2012.02863.x. - Kadir
, R. A., M., and S.. 2010. “ The Impact of Menstrual Disorders on Quality of Life in Women with Inherited Bleeding Disorders.” Haemophilia( 5): 832– 839. doi: 10.1111/j.1365-2516.2010.02269.x. - Kadir
, R. A., C. A., D., C. A., and D. L.. 1998. “ Quality of Life During Menstruation in Patients with Inherited Bleeding Disorders.” Haemophilia( 6): 836– 841. doi: 10.1046/j.1365-2516.1998.00208.x - Khair
, K., M., and D.. 2013. “ The Experience of Girls and Young Women with Inherited Bleeding Disorders.” Haemophilia( 5): e276– e281. doi: 10.1111/hae.12155. - Kim
, S. Y., S. W., J. M., I. S., H. J., H. S., J. S., et al. 2013. “ Impact of Personality and Depression on Quality of Life in Patients with Severe Haemophilia in Korea.” Haemophilia( 5): e270– e275. doi: 10.1111/hae.12221. - Kirp
, D. 1999. “ Look Back in Anger: Hemophilia and AIDS Activism in the International Tainted-Blood Crisis.” Journal of Comparative Policy Analysis( 2): 177– 202. doi: 10.1023/A:1010075019103. - Kulkarni
, A., C. A., A., and R. A.. 2006. “ Disorders of Menstruation and Their Effect on the Quality of Life in Women with Congenital Factor VII Deficiency.” Haemophilia( 3): 248– 252. doi: 10.1111/j.1365-2516.2006.01219.x. - Leskošek
, V.. “ Historical Perspective on the Ideologies of Motherhood and its Impact on Social Work.” Social Work and Society( 2). http://nbn-resolving.de/urn:nbn:de:101:1-201110263924. - Lingsom
, S. 2008. “ Invisible Impairments: Dilemmas of Concealment and Disclosure.” Scandinavian Journal of Disability Research( 1): 2– 16. doi: 10.1080/15017410701391567. - Lövdahl
, S., K. M., F., M., J. Å., E., and J.. 2013. “ Incidence, Mortality Rates and Causes of Deaths in Haemophilia Patients in Sweden.” Haemophilia( 3): 362– 369. doi: 10.1111/hae.12092. - Lui
, L. 2013. Re-negotiating Gender: Household Division of Labor When She Earns More Than He Does. Dordrecht : Springer Netherlands. - Mahalik
, J. R., S. M., and M.. 2007. “ Masculinity and Perceived Normative Health Behaviors as Predictors of Men's Health Behaviors.” Social Science and Medicine( 11): 2201– 2209. doi: 10.1016/j.socscimed.2007.02.035. - MedlinePlus
. 2013. Bleeding Disorders. 2014. http://www.nlm.nih.gov/medlineplus/ency/article/001304.htm - O'Flynn
, N. 2006. “ Menstrual Symptoms: The Importance of Social Factors in Women's Experiences.” British Journal of General Practice( 533): 950– 957. - Oliver
, M. 1990. The Politics of Disablement. Basingstoke : Macmillan. - Pacheco
, L. D., M. M., G. R., S., G. D., and A. C.. 2010. “ Von Willebrand Disease and Pregnancy: A Practical Approach for the Diagnosis and Treatment.” American Journal of Obstetrics and Gynecology( 3): 194– 200. doi: 10.1016/j.ajog.2010.02.036. - Park
, J. 2000. “ ‘The Worst Hassle Is You Can't Play Rugby’: Haemophilia and Masculinity in New Zealand.” Current Anthropology( 3): 444– 453. doi: 10.1086/300151 - Patterson
, A.. “ The Social Construction and Resistance of Menstruation as a Public Spectacle.” In Illuminating How Identities, Stereotypes and Inequalities Matter through Gender Studies, edited by D. N., M. A., and D. L. R., 91– 108. Dordrecht : Springer. - Rich
, S., A., M., and J.. 2011. “ ‘Unnatural’, ‘Unwomanly’, ‘Uncreditable’ and ‘Undervalued’: The Significance of Being a Childless Woman in Australian Society.” Gender Issues( 4): 226– 247. doi: 10.1007/s12147-011-9108-1. - Riley
, R. R., M., E., and S.. 2011. “ Assessment and Management of Pain in Haemophilia Patients.” Haemophilia( 6): 839– 845. doi: 10.1111/j.1365-2516.2011.02567.x. - Schieppati
, A., J.-I., E., and A.. 2008. “ Why Rare Diseases are an Important Medical and Social Issue.” The Lancet( 9629): 2039– 2041. doi: 10.1016/S0140-6736(08)60872-7. - Schippers
, M. 2007. “ Recovering the Feminine Other: Masculinity, Femininity, and Gender Hegemony.” Theory and Society( 1): 85– 102. doi: 10.1007/s11186-007-9022-4. - Schramm
, W.. “ The History of Haemophilia – A Short Review.” Thrombosis Research 134: 4– 9. doi: 10.1016/j.thromres.2013.10.020. - Shakespeare
, T. 2006. Disability Rights and Wrongs. London : Routledge. - Sharief
, L. A., and R. A.. 2013. “ Congenital Factor XIII Deficiency in Women: A Systematic Review of Literature.” Haemophilia( 6): e349– e357. doi: 10.1111/hae.12259. - Shuttleworth
, R., N., and N. J.. 2012. “ The Dilemma of Disabled Masculinity.” Men and Masculinities( 2): 174– 194. doi: 10.1177/1097184x12439879. - Souza
, J. C., H. G., C. S., F. L., D. A., and J.. 2012. “ Haemophilia and Exercise.” International Journal of Sports Medicine( 2): 83– 88. doi: 10.1055/s-0031-1286292. - Stubbs
, M. L., and D.. 2004. “ Negative Attitudes Toward Menstruation.” Women and Therapy( 3–4): 37– 54. doi: 10.1300/J015v27n03_04. - The Norwegian Directorate of Health
. 2011. Sjeldne Diagnoser. 2014. http://helsedirektoratet.no/helse-og-omsorgstjenester/sjeldne-tilstander/Sider/default.aspx - Thomas
, C. 2006. “ Disability and Gender: Reflections on Theory and Research.” Scandinavian Journal of Disability Research( 2–3): 177– 185. doi: 10.1080/15017410600731368. - Thorsen
, K., L., and V. H.. 2011. Sjelden og Vanlig. Livsberetninger, Livsløp og Aldring med Sjeldne Diagnoser. Tønsberg : Forlaget Aldring og helse. - Traustadóttir
, R. 2006. “ Disability and Gender: Introduction to the Special Issue.” Scandinavian Journal of Disability Research( 2–3): 81– 84. doi: 10.1080/15017410600831341. - Von Mackensen
, S.. “ Quality of Life in Women with Bleeding Disorders.” Haemophilia( Suppl. 1): 33– 37. doi: 10.1111/j.1365-2516.2011.02563.x. - World Federation of Hemophilia
. ( 2012). Carriers and Women with Hemophilia. Montréal : World Federation of Hemophilia (WFH). - Wysocki
, D. K.( 1998). “ But Women Can't Have ‘Hemophilia’! A Look at the Lives of Women with Bleeding Disorder.” Sociological Research Online( 4). http://www.socresonline.org.uk/3/4/3.html
DOI: https://doi.org/10.1080/15017419.2015.1091034 | Journal eISSN: 1745-3011
Language: English
Page range: 65 - 77
Submitted on: Oct 21, 2014
Accepted on: Jul 27, 2015
Published on: Oct 1, 2017
Published by: Stockholm University Press
In partnership with: Paradigm Publishing Services
Keywords:
© 2017 Plata S. Diesen, Lisbet Grut, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.