“He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care
Recent treatment option advances in haemophilia care have contributed to a discourse of ‘normality’ around the condition, in which people with haemophilia (PwH) are increasingly expected to live ‘normal’ lives unburdened by their condition.
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Sciendo
2020-12-01
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| Series: | The Journal of Haemophilia Practice |
| Subjects: | |
| Online Access: | https://doi.org/10.17225/jhp00167 |
| _version_ | 1797832437215002624 |
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| author | Hughes Thomas Brok-Kristensen Mikkel Gargeya Yosha Worsøe Lottrup Anne Mette Bo Larsen Ask Torres-Ortuño Ana Mackett Nicki Stevens John |
| author_facet | Hughes Thomas Brok-Kristensen Mikkel Gargeya Yosha Worsøe Lottrup Anne Mette Bo Larsen Ask Torres-Ortuño Ana Mackett Nicki Stevens John |
| author_sort | Hughes Thomas |
| collection | DOAJ |
| description | Recent treatment option advances in haemophilia care have contributed to a discourse of ‘normality’ around the condition, in which people with haemophilia (PwH) are increasingly expected to live ‘normal’ lives unburdened by their condition. |
| first_indexed | 2024-04-09T14:07:46Z |
| format | Article |
| id | doaj.art-99198ba7f6474e1b9efb476360a44add |
| institution | Directory Open Access Journal |
| issn | 2055-3390 |
| language | English |
| last_indexed | 2024-04-09T14:07:46Z |
| publishDate | 2020-12-01 |
| publisher | Sciendo |
| record_format | Article |
| series | The Journal of Haemophilia Practice |
| spelling | doaj.art-99198ba7f6474e1b9efb476360a44add2023-05-06T15:59:46ZengSciendoThe Journal of Haemophilia Practice2055-33902020-12-017115015710.17225/jhp00167“He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia careHughes Thomas0Brok-Kristensen Mikkel1Gargeya Yosha2Worsøe Lottrup Anne Mette3Bo Larsen Ask4Torres-Ortuño Ana5Mackett Nicki6Stevens John7ReD Associates, Copenhagen, DenmarkReD Associates, Copenhagen, DenmarkReD Associates, Copenhagen, DemnarkReD Associates, Copenhagen, DenmarkReD Associates, Copenhagen, DenmarkUniversity of Murcia, SpainAlder Hey Children's NHS Foundation Trust, UKSwedish Orphan Biovitrum AB (Sobi), Stockholm, SwedenRecent treatment option advances in haemophilia care have contributed to a discourse of ‘normality’ around the condition, in which people with haemophilia (PwH) are increasingly expected to live ‘normal’ lives unburdened by their condition.https://doi.org/10.17225/jhp00167haemophiliacommunityembodied knowledgeembodied sense of the diseasenormalitychronic illnessnew era of care |
| spellingShingle | Hughes Thomas Brok-Kristensen Mikkel Gargeya Yosha Worsøe Lottrup Anne Mette Bo Larsen Ask Torres-Ortuño Ana Mackett Nicki Stevens John “He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care The Journal of Haemophilia Practice haemophilia community embodied knowledge embodied sense of the disease normality chronic illness new era of care |
| title | “He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care |
| title_full | “He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care |
| title_fullStr | “He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care |
| title_full_unstemmed | “He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care |
| title_short | “He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care |
| title_sort | he s a normal kid now an ethnographic study of challenges and possibilities in a new era of haemophilia care |
| topic | haemophilia community embodied knowledge embodied sense of the disease normality chronic illness new era of care |
| url | https://doi.org/10.17225/jhp00167 |
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