Living with mild haemophilia and care after a bleed – a qualitative study

Open access

Abstract

Little is known about the experience of living with mild haemophilia. Clinically, many patients do not present promptly for health care following a bleed. Our aim in this study was to gain an understanding of the experiences of people living with mild haemophilia, and what influences their decision to access or not access healthcare following a bleed. A qualitative phenomenological study using semistructured, digitally recorded interviews, analysed using Colaizzi’s interpretive phenomenological analysis. Eight patients with mild haemophilia, median age 52 (range 26- 83) were interviewed. Two themes emerged: Accessing healthcare: Participants managed small bleeds or injuries at home and employed the RICE (rest, ice, compression, elevate) principle. The majority employed a “wait and see” strategy to judge whether the bleed was significant. Pain helped them determine whether they needed to access healthcare services. There was strong resistance to attending an Accident and Emergency (A&E) department because of long waiting times, perceived lack of A&E staff knowledge about managing haemophilia, and fear of not receiving medication promptly. Living with mild haemophilia: The time at which participants first knew they had mild haemophilia ranged from early childhood to adulthood. When sharing their haemophilia status with friends, schools and employers some felt supported, while others were more reticent, finding that restrictions were placed on them once it was disclosed. The impact of living with mild haemophilia varied from very little to a great deal. For most, it did not prevent active involvement in sports. Most were not concerned about having children, but some feared haemophilia being passed on to future generations. Work is required to encourage people with mild haemophilia to access health care more promptly following a bleed. Guidelines regarding the care and management of haemophilia need to be readily available to A&E staff. Recognition is needed that “mild” may not appear mild to the patient.

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