McLaughlin, P., Hurley, M., Chowdary, P., Stephensen, D. and Khair, K. (2022) How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study. Disability and Rehabilitation, 44(26), pp. 8412-8419. ISSN (print) 0963-8288
Abstract
This study aimed to explore the life experiences of pain in people with severe haemophilia and understand how such experiences influence beliefs and sensation of pain in adulthood. A qualitative inquiry approach using focus groups and semi-structured individual interviews was used. Participants included people with severe haemophilia living with chronic pain. Data were analysed using reflexive thematic analysis. Fourteen men with a median age of 47 (range 23–73) agreed to take part. Eleven participated in two focus groups and three were interviewed over telephone. Two themes were conceptualised from the data: (i) haemophilia and pain – an evolving life biography (the personal narrative, historical, social, and medical context, continuous adaptation of activity choices, surveillance of pain and its meaning); (ii) “My normal isn’t normal” – identity and self-agency (pain as a feature of life and identify with severe haemophilia, loss of enjoyable activities balanced against staying active, barriers to participation).
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