Disclosing haemophilia at school: strategies employed by mothers of children with haemophilia in Japan

Seki, Yukiko; Kakinuma, A.; Kuchii, T.; Ohira, Katsumi

doi:10.1111/hae.12674

Cited by 4 publications

(4 citation statements)

References 29 publications

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“…When combined with inadequately informed physicians and other healthcare workers (HCWs), this leads to poor care being perpetuated. Stigma from the disease combined with fear of the previously strong association with HIV infection continues to be a major cause of under reporting in Asia‐Pacific . Denial becomes a strong coping mechanism for some parents challenged by their child's diagnosis.…”

Section: Principle 12: Recognition Of Socio‐economic and Cultural DIVmentioning

confidence: 99%

Principles of haemophilia care: The Asia‐Pacific perspective

et al. 2018

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Optimal haemophilia care is best established and implemented through a well-coordinated plan guided by clearly defined principles and priorities. A document which enunciates those details is therefore important. A successful example of this approach is the definition of principles of haemophilia care (PHC) outlined by the European Association for Haemophilia and Associated Disorders (EAHAD) and also the World Federation of Hemophilia. A similar document applicable to the Asia-Pacific region must take into account not only the highly varied healthcare systems but also the tremendous socio-economic and cultural diversities which impact provision of such care. The Asia-Pacific Haemophilia Working Group (APHWG), representing the countries in this region, has prepared this perspective of the PHC. While endorsing the overall framework outlined by EAHAD, this APHWG document emphasizes regional priorities on education and training of healthcare personnel in the diagnosis and management of hereditary bleeding disorders. Central coordinating agencies with wide stakeholder input, networks of haemophilia treatment centres and national registries as well as robust processes for procurement and distribution of safe and effective clotting factor concentrates (CFCs), implementation of prophylaxis programmes and management of patients with inhibitors should also be developed. The implementation of these strategies should lead to establishment of good comprehensive care programmes. This document should also be an advocacy tool to lobby for improved care for people with haemophilia (PWH) in the region. We urge national healthcare policy makers to consider these principles and initiate strong and decisive action to reach these goals.

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Section: Principle 12: Recognition Of Socio‐economic and Cultural DIVmentioning

confidence: 99%

Principles of haemophilia care: The Asia‐Pacific perspective

et al. 2018

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“…There have been very few qualitative studies in either the English language or Japanese literatures, and these are greatly outnumbered by the clinical, biomedical, and epidemiologic studies that dominate the field in Japan. A focus of qualitative inquiry has been on the experiences of a very specific population: iatrogenically infected hemophiliacs living with HIV and their families (Cullinane, 2005; Seki, Kakinuma, Kuchii, & Ohira, 2015; Seki, Yamazaki, Mizota, & Inoue, 2009). Other studies have examined HIV and sexual politics (Miller, 2002), a clinical phobia of HIV among uninfected persons (Miller, 1998), and sex partner-seeking strategies among men who have sex with men (MSM; Ishi, 2012).…”

Section: Introductionmentioning

confidence: 99%

HIV’s Syndemic Links With Mental Health, Substance Use, and Violence in an Environment of Stigma and Disparities in Japan

DiStefano

2016

Qual Health Res

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A syndemics orientation has become a valuable lens through which to understand the complex system dynamics of HIV, HIV's links to other social and health problems, and the design of effective, comprehensive interventions. Using data from a broader ethnographic study of HIV epidemics in the Kansai Region and Tokyo Metropolitan Area of Japan, I found that HIV was synergistically linked with poor mental health, substance use, and violence, suggesting the existence of at least three syndemics. These occurred in an environment of stigma and social and health disparities, particularly for men who have sex with men, transgender persons, immigrants, and people living with HIV. Integrated interventions, led by Japan's HIV nongovernmental organizations and supported by the government, should more aggressively target stigma, which underlies most of the syndemic connections. Quantitative research should build upon the ethnographically derived associations shown here and test whether there are additive syndemic effects.

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“…The English-language and Japanese literatures on HIV in Japan are dominated by clinical and epidemiologic studies using almost exclusively quantitative and biomedical data. A focus of the comparatively smaller body of social science research, including both qualitative and quantitative investigations, has been the experiences of a very specific population: the victims and families affected by the “Yakugai AIDS Scandal,” in which hemophilia patients were infected through blood products imported mainly from the U.S.( Cullinane, 2005 ; Mizota, Ozawa, Yamazaki & Inoue, 2006 ; Seki, Kakinuma, Kuchii & Ohira, 2015 ; Seki, Yamazaki, Mizota & Inoue, 2009) . The scandal and its aftermath have been an important part of Japan's unique HIV history; however, hemophiliac HIV cases have comprised only 5.9% of cumulative HIV/AIDS cases in Japan since the beginning of the epidemic ( Ministry of Health Labour and Welfare, 2014 , Japan Foundation for AIDS Prevention, 2013a , DiStefano, 2016 ).…”

Section: Introductionmentioning

confidence: 99%

HIV in Japan: Epidemiologic puzzles and ethnographic explanations

DiStefano

2016

SSM - Population Health

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Japan is widely perceived to have a low level of HIV occurrence; however, its HIV epidemics also have been the subject of considerable misunderstanding globally. I used a ground truthing conceptual framework to meet two aims: first, to determine how accurately official surveillance data represented Japan's two largest epidemics (urban Kansai and Tokyo) as understood and experienced on the ground; and second, to identify explanations for why the HIV epidemics were unfolding as officially reported. I used primarily ethnographic methods while drawing upon epidemiology, and compared government surveillance data to observations at community and institutional sites (459 pages of field notes; 175 persons observed), qualitative interviews with stakeholders in local HIV epidemics (n = 32), and document research (n = 116). This revealed seven epidemiologic puzzles involving officially reported trends and conspicuously missing information. Ethnographically grounded explanations are presented for each. These included factors driving the epidemics, which ranged from waning government and public attention to HIV, to gaps in sex education and disruptive leadership changes in public institutions approximately every two years. Factors constraining the epidemics also contributed to explanations. These ranged from subsidized medical treatment for most people living with HIV, to strong partnerships between government and a well-developed, non-governmental sector of HIV interventionists, and protective norms and built environments in the sex industry. Local and regional HIV epidemics were experienced and understood as worse than government reports indicated, and ground-level data often contradicted official knowledge. Results thus call into question epidemiologic trends, including recent stabilization of the national epidemic, and suggest the need for revisions to the surveillance system and strategies that address factors driving and constraining the epidemics. Based upon its utility in the current study, ground truthing has value as a conceptual framework for research and shows promise for future theoretical development.

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Disclosing haemophilia at school: strategies employed by mothers of children with haemophilia in Japan

Abstract: For children with haemophilia to feel safe attending school, public schools must establish care management and anti-discrimination systems for children with chronic diseases, thus assuring parents of their children's welfare at school.

Cited by 4 publications

References 29 publications

Principles of haemophilia care: The Asia‐Pacific perspective

Principles of haemophilia care: The Asia‐Pacific perspective

HIV’s Syndemic Links With Mental Health, Substance Use, and Violence in an Environment of Stigma and Disparities in Japan

HIV in Japan: Epidemiologic puzzles and ethnographic explanations

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