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Past the tipping point: a qualitative study of the views and experiences of men with haemophilia regarding mobility, balance, and falls

Past the tipping point: a qualitative study of the views and experiences of men with haemophilia regarding mobility, balance, and falls
Past the tipping point: a qualitative study of the views and experiences of men with haemophilia regarding mobility, balance, and falls

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 Rehabilitation Healthcare 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.

Qualitative research, balance, falls, haemophilia, mobility
0963-8288
1-9
Taylor, Stephanie
16aa14f0-52a9-4e2b-bd9d-b70f1d4637f7
Toye, Francine
c3383ea4-b87b-4d50-aecb-d35f2e3b5620
Donovan-hall, Margaret
5f138055-2162-4982-846c-5c92411055e0
Barker, Karen
5c22bd15-fe9f-434b-a16a-5c2c24e157b8
Taylor, Stephanie
16aa14f0-52a9-4e2b-bd9d-b70f1d4637f7
Toye, Francine
c3383ea4-b87b-4d50-aecb-d35f2e3b5620
Donovan-hall, Margaret
5f138055-2162-4982-846c-5c92411055e0
Barker, Karen
5c22bd15-fe9f-434b-a16a-5c2c24e157b8

Taylor, Stephanie, Toye, Francine, Donovan-hall, Margaret and Barker, Karen (2021) Past the tipping point: a qualitative study of the views and experiences of men with haemophilia regarding mobility, balance, and falls. Disability and Rehabilitation, 1-9. (doi:10.1080/09638288.2021.1988731).

Record type: Article

Abstract

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 Rehabilitation Healthcare 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.

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Past_the_tipping_point_.accepted version.sept.2021 - Accepted Manuscript
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More information

Accepted/In Press date: 27 September 2021
e-pub ahead of print date: 15 October 2021
Additional Information: Publisher Copyright: © 2021 OUH NHS Foundation Trust. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
Keywords: Qualitative research, balance, falls, haemophilia, mobility

Identifiers

Local EPrints ID: 453439
URI: http://eprints.soton.ac.uk/id/eprint/453439
ISSN: 0963-8288
PURE UUID: c2f1fba0-5957-452b-b34e-f468d339b0ca

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Date deposited: 17 Jan 2022 17:33
Last modified: 17 Mar 2024 06:54

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Contributors

Author: Stephanie Taylor
Author: Francine Toye
Author: Karen Barker

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