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“He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care

Thomas Hughes

Thomas Hughes

ReD AssociatesCopenhagen, Denmark
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Hughes, Thomas
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Mikkel Brok-Kristensen

Mikkel Brok-Kristensen

ReD AssociatesCopenhagen, Denmark
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Brok-Kristensen, Mikkel
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Yosha Gargeya

Yosha Gargeya

ReD AssociatesCopenhagen, Demnark
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Gargeya, Yosha
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Anne Mette Worsøe Lottrup

Anne Mette Worsøe Lottrup

ReD AssociatesCopenhagen, Denmark
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Worsøe Lottrup, Anne Mette
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Ask Bo Larsen

Ask Bo Larsen

ReD AssociatesCopenhagen, Denmark
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Bo Larsen, Ask
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Ana Torres-Ortuño

Ana Torres-Ortuño

University of MurciaSpain
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Torres-Ortuño, Ana
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Nicki Mackett

Nicki Mackett

Alder Hey Children's NHS Foundation TrustUK
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Mackett, Nicki
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John Stevens

John Stevens

Swedish Orphan Biovitrum AB (Sobi)Stockholm, Sweden
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Stevens, John
  
Dec 17, 2020
“He's a normal kid now”: an ethnographic study of challenges and possibilities in a new era of haemophilia care's Cover Image
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Article Category: Community Focus
Published Online: Dec 17, 2020
Page range: 150 - 157
DOI: https://doi.org/10.17225/jhp00167
Keywords
© 2020 Thomas Hughes et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
While advances in treatment mean that young people with haemophilia can now expect to lead a much more ‘normal’ life than previous generations, it is essential that the discourse around ‘normality’ in haemophilia does not obscure the remaining and new challenges they experience in their everyday lives.
While advances in treatment mean that young people with haemophilia can now expect to lead a much more ‘normal’ life than previous generations, it is essential that the discourse around ‘normality’ in haemophilia does not obscure the remaining and new challenges they experience in their everyday lives.
Engaging in physical activity is one way in which PwH are living more ‘normal’ lives, and is important for joint health and wellness. Paradoxically, advances in in haemophilia care mean that younger PwH may be less aware of their condition, lacking embodied awareness and intuitive understanding of their limitations.
Engaging in physical activity is one way in which PwH are living more ‘normal’ lives, and is important for joint health and wellness. Paradoxically, advances in in haemophilia care mean that younger PwH may be less aware of their condition, lacking embodied awareness and intuitive understanding of their limitations.
Language:
English
Publication timeframe:
1 times per year
Journal Subjects:
Medicine, Basic Medical Science, Basic Medical Science, other, Clinical Medicine, Clinical Medicine, other, Pharmacy, Pharmacology
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