| Cullinane (2005) [32] Based in Japan |
Tainted blood and vengeful spirits: the legacy of Japan’s yakugai eizu (AIDS) trials |
Anthropological exploration of themes used by those in the infected blood trial |
Narratives taken from yakugai eizu AIDS trial, including interviews, published accounts, newspapers and legal documents |
Themes of lost trust, filial piety and desires for good deaths |
| Fillion (2003) [27] Based in France |
How is medical decision-making shared? The case of haemophilia patients and doctors: the aftermath of the infected blood affair in France |
How haemophilia patients and doctors in France rethought shared decision-making after the CBS |
Qualitative survey. The interviews covered 31 clinical haemophilia doctors and 31 patients/service users: 21 adult males with severe haemophilia (21/31), infected (14/21) or not (7/21) with HIV, the infected wife of one of the latter (1/31), and nine parents of young PwH with severe haemophilia (9/31), either HIV positive (6/9) or negative (3/9). |
Both groups rethought their roles and changed their practice. Individuals made different changes, but all shared more medico-scientific knowledge. |
| Fillion (2008) [28] Based in France |
Clinical relationships tested by iatrogenicity: The case of haemophiliac patients faced with the epidemic of transfusional AIDS |
Insight into the impact of the CBS on changes in relationships and commitment to medicine for PwH and their families |
57 biographical life narrative interviews (of an average of 3 hours) of adult PwH (38) or their families (19). Included in the study were HIV-negative (15/38) and HIV-positive (23/38) PwH, parents of children who were infected (13/18) or not (5/18) – 6 of whom had lost at least one son through AIDS – and the wife of one PwH who had been infected and who had infected her through sexual contact. |
Changes in attitude among PwH and their families. New moral expectations of the medical world. The importance of not being oblivious to who the victims are and what they want, which varies from person to person. |
| Fletcher et al. (2021) [29] Based in UK |
An exploration of why men with severe haemophilia might not want gene therapy: The Exigency study |
Attitudes of men with severe haemophilia towards gene therapy |
10 adult men with severe haemophilia (8 haemophilia A; 2 haemophilia B), mean age 34.3 years, participated in a 1-hour focus group (n=9) or interview (n=1). |
A variety of factors influenced this, including efficacy, safety (among older participants who had experienced the CBS), treatment burden and self-identity. |
| Hughes et al. (2020) [31] Based in Denmark, Ireland, Germany, UK and Spain |
“He’s a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care |
Views of normality in families affected by haemophilia |
Grounded theory approach, with semi-structured interviews of families |
The theme of normality across different generations identified that PwH from older generations were aware of the ability of younger PwH to live normal lives, and identified the trauma of the CBS as still present for them |
| Keshavjee et al. (2001) [30] Based in the UK |
Medicine betrayed: hemophilia patients and HIV in the US |
Exploration of the Institute of Medicine (IOM) report process |
Examination of process, including testimonies provided to the IOM |
That the IOM report obfuscated the moral dimensions of suffering |
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