Major themes extracted from the answers to the open-ended question
| Theme | Subtheme examples of quotes | ||
| Poor administration of coagulation medicines | Low availability of coagulation medicines | 1 | ‘There are no needed medicines in the primary hospital’. |
| 2 | ‘There is a lack of medicines’. | ||
| 3 | ‘The primary hospital should take responsibility to supply the medicines’. | ||
| 4 | ‘It is difficult to buy needed medicines’. | ||
| 5 | ‘‘This disease does not need hospital treatment; but medicines are expensive and difficult to buy. This problem needs to be addressed as this disease damages multiple organs and long-term use of medicines is required’. | ||
| 6 | ‘I am from the countryside and I can only obtain the medicines from the big city’. | ||
| 7 | ‘I think supply of medications is the most important thing to be solved’. | ||
| Irregular use of medications | 8 | ‘To ensure the timely use of drugs to prevent haemophilia, reduce the rate of disability, improve the quality of life’. | |
| Adverse impacts of haemophilia on work and life | Low work ability | 9 | ‘We can’t work and need a better healthcare system’. ‘We have lost the ability to work and have no source of income’. |
| 10 | |||
| 11 | ‘I am incapable of working’. | ||
| Incomplete family life | 12 | ‘We lost the ability to survive, work and get married’. | |