“It's a way of life”: Results from the Perceptions of Pain in Haemophilia study
, oraz | 02 mar 2022
Article Category: Community Focus
Data publikacji: 02 mar 2022
Zakres stron: 145 - 154
DOI: https://doi.org/10.2478/jhp-2021-0020
Słowa kluczowe
© 2021 Kate Khair et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
Participant demographics
| 01 | A | 18 | EHL |
| 02 | B | 22 | EHL |
| 03 | A | 39 | SHL |
| 04 | A | 33 | SHL |
| 05 | B | 27 | EHL |
| 06 | B | 21 | EHL |
| 07 | A | 42 | Bi-specific antibody |
| 08 | A | 57 | Bi-specific antibody |
| 09 | B | 37 | EHL |
| 10 | A | 40 | EHL |
| 11 | A | 25 | Bi-specific antibody |
| 12 | A | 58 | EHL |
| 13 | B | 32 | EHL |
| 14 | A | 40 | SHL |
| 15 | A | 22 | SHL (on demand) |
| 16 | A (moderate) | 18 | SHL |
| 17 | A | 57 | Bi-specific antibody |
| 18 | A | 32 | Bi-specific antibody |
Themes discussed by participants
| Quality of support and treatment from HCPs | 3 | 51 |
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3 | 11 |
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3 | 9 |
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3 | 9 |
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3 | 7 |
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2 | 13 |
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1 | 2 |
| Being able to talk to someone about the pain | 3 | 16 |
| Current state of knowledge | 3 | 12 |
| People's lack of awareness of haemophilia | 3 | 10 |
| Ageing | 3 | 8 |
| Understanding own pain and reacting to it | 2 | 7 |
| Masking pain | 2 | 4 |
| Accepting and getting used to pain | 3 | 26 |
| Physical activity and managing through the pain | 3 | 15 |
| Taking medication | 3 | 13 |
| Maintaining a positive mindset | 3 | 9 |
| Adjusting movement/position | 3 | 7 |
| Using ice | 2 | 7 |
| Using crutches | 1 | 2 |
| Other (yoga, hot baths, other focus) | 2 | 7 |
| Mental health | 3 | 11 |
| Daily habits/routine | 3 | 8 |
| Sport and hobbies | 3 | 7 |
| Work | 2 | 3 |
| School and education | 1 | 2 |
| Social life | 1 | 1 |
j.jhp-2021-0020.tabapp.001
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Introduce self and study Emphasise non-judgemental position, discussion not a Q&A Assure confidentiality Check permission to record the conversations; direct quotes will be used but will be fully anonymised |
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Invite the participants to introduce themselves (include age and where they are currently living, type and severity of haemophilia, current treatment) |
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Can you tell us about your first memories of (joint) bleeding?
How this was managed? At home and in hospital When did they first realise they had pain?
How many years ago is that? How/does it relate with their haemophilia? How/does it affect day-to-day life? What impact on work, study, family life? (PROBE) Does it affect how active they are? How much? Why? Would you like to do more? |
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Do your haemophilia treaters ask about pain? Do you use pain assessment tools?
Are these useful (why/why not?)? Have you told your treatment team about your pain?
If not, why not? If yes, how do they respond? What have you been told? (PROBE) Who in the team is interested in pain? Anyone else – GP, etc? What do you do/use to manage pain? |
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Do they use factor concentrate/treatment for analgesic effect?
Do they use OTC meds/street drugs? What have you done previously? Why did they choose these? (PROBE) Did anything work well? Why do they think it worked? What did not work – why not? |
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Why do you think you have pain? (PROBE) Have you noticed any particular things that happen to make you have more pain? What is the relationship between these events and your pain? Do you think your pain can be made easier/managed better? And how? |
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Have you any questions or thoughts to add about the things we have discussed today? Thanks for participating and next steps |