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PURPOSE: The life expectancy of people with haemophilia is increasing due to improved medical care. This improvement is accompanied by the co-morbidities of ageing, which include musculoskeletal degeneration and the associated effect on proprioception and balance. This study aims to explore the views and everyday experiences of those living with haemophilia regarding this. MATERIALS AND METHODS: Nine people with moderate or severe haemophilia aged 43-58 years participated in semi-structured interviews and thematic analysis was used to examine the data. RESULTS: Participants described pain and reduced movement in joints as a result of repeated bleeds, which caused problems with mobility and balance. Constant vigilance of their surroundings together with the potential consequences of bleeds caused continual worry. Participants were resourceful in their strategies to cope with the effects of haemophilia, to reduce pain and to minimise the risk of falling. However, participants felt stigmatised because of their condition. CONCLUSION: People with haemophilia have difficulties with their mobility and balance that can increase their risk of falling. Healthcare professionals need to understand and address the physical and psycho-social factors that contribute to the risk of falls. A multi-disciplinary approach to devise effective strategies to counteract and monitor the risk of falls would be useful.Implications for RehabilitationHealthcare professionals should identify movements that are fearful and work on ways to increase confidence and ability to perform these.Healthcare professionals need to identify the recovery strategies used to maintain balance and build these movements into home exercise programmes.Effective pain reduction strategies, both pharmacological and non-pharmacological, need to be investigated and optimised.Footwear choice has implications for both pain reduction and balance and should be discussed in routine reviews.Optimising vision would maximise visual input to aid balance.

Original publication

DOI

10.1080/09638288.2021.1988731

Type

Journal article

Journal

Disabil rehabil

Publication Date

15/10/2021

Pages

1 - 9

Keywords

Qualitative research, balance, falls, haemophilia, mobility