Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study
With the major advances in treatment of haemophilia in recent decades, people with haemophilia (PwH) are more protected in their daily lives than ever before. However, recent studies point to persisting or increasing patient experience of uncertainty.
| 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/jhp00168 |
| _version_ | 1797832401543495680 |
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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 | With the major advances in treatment of haemophilia in recent decades, people with haemophilia (PwH) are more protected in their daily lives than ever before. However, recent studies point to persisting or increasing patient experience of uncertainty. |
| first_indexed | 2024-04-09T14:07:16Z |
| format | Article |
| id | doaj.art-1421ba1a3564412f86f9380a5ea677cd |
| institution | Directory Open Access Journal |
| issn | 2055-3390 |
| language | English |
| last_indexed | 2024-04-09T14:07:16Z |
| publishDate | 2020-12-01 |
| publisher | Sciendo |
| record_format | Article |
| series | The Journal of Haemophilia Practice |
| spelling | doaj.art-1421ba1a3564412f86f9380a5ea677cd2023-05-06T15:59:46ZengSciendoThe Journal of Haemophilia Practice2055-33902020-12-017115816410.17225/jhp00168Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic studyHughes Thomas0Brok-Kristensen Mikkel1Gargeya Yosha2Worsøe Lottrup Anne Mette3Bo Larsen Ask4Torres-Ortuño Ana5Mackett Nicki6Stevens John7ReD Associates, Copenhagen, DenmarkReD Associates, Copenhagen, DenmarkReD Associates, Copenhagen, DenmarkReD Associates, Copenhagen, DenmarkReD Associates, Copenhagen, DenmarkUniversity of Murcia, SpainAlder Hey Children's NHS Foundation Trust, UKSwedish Orphan Biovitrum AB (Sobi), Stockholm, SwedenWith the major advances in treatment of haemophilia in recent decades, people with haemophilia (PwH) are more protected in their daily lives than ever before. However, recent studies point to persisting or increasing patient experience of uncertainty.https://doi.org/10.17225/jhp00168mental modelsprotectionfactor levelsuncertaintyhaemophiliaethnography |
| spellingShingle | Hughes Thomas Brok-Kristensen Mikkel Gargeya Yosha Worsøe Lottrup Anne Mette Bo Larsen Ask Torres-Ortuño Ana Mackett Nicki Stevens John Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study The Journal of Haemophilia Practice mental models protection factor levels uncertainty haemophilia ethnography |
| title | Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study |
| title_full | Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study |
| title_fullStr | Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study |
| title_full_unstemmed | Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study |
| title_short | Navigating uncertainty: an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study |
| title_sort | navigating uncertainty an examination of how people with haemophilia understand and cope with uncertainty in protection in an ethnographic study |
| topic | mental models protection factor levels uncertainty haemophilia ethnography |
| url | https://doi.org/10.17225/jhp00168 |
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