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Haemophilia Carriers Experience Study (CARES): A mixed method exploration into the experience of women who are carriers of Haemophilia
Author(s) -
Whitaker Sarah,
Aiston Helen,
Hung Wai Tung,
Pink Ruth,
Mangles Sarah
Publication year - 2021
Publication title -
haemophilia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.213
H-Index - 92
eISSN - 1365-2516
pISSN - 1351-8216
DOI - 10.1111/hae.14360
Subject(s) - haemophilia , medicine , psychosocial , anxiety , haemophilia a , focus group , population , affect (linguistics) , family medicine , clinical psychology , psychiatry , pediatrics , psychology , environmental health , marketing , business , communication
Haemophilia research has traditionally focused on patients diagnosed with haemophilia and although research priorities are rapidly changing, there is still a lot more we need to understand about the experiences and psychosocial issues facing women who are diagnosed as carriers of haemophilia (Haemophilia, https://doi.org/10.1111/hae.14043). One study noted that the understanding of carriers' experience of bleeding by healthcare professionals is limited and that many women have had negative experiences of healthcare (Haemophilia, 17, 2011, 237). The carrier population does not typically receive much support for themselves as individuals as they are often not registered at Haemophilia Centres in their own right.