Haemophilia is a serious disease whose unpredictability causes concern in daily life. It prevents those affected from fully integrating into society due to frequent absences from school, limited ability to play sports, the need to have medications on hand at all times, and intravenous administration of medications. Therefore, haemophilic patients need extensive social support, both from their families, who help them cope with the daily complications due to their disease, and from experts, who help them manage their health.
Psychologists play a key role in providing information, support, and listening during treatment, especially when operations are necessitated by complications. Teachers can facilitate the integration of children with haemophilia into their peer group, as well as sports and social activities, from which they are often excluded due to fear for their health. Doctors and nurses provide support by communicating openly about the disease.
Family and spouses provide people with emotional disabilities with stability, help, and support during health complications due to their illness, a sense of future through children and grandchildren, and a feeling of satisfaction with life.
Unexpectedly, people with haemophilia want to provide social support to others. So, not only do they receive, but they also offer significant help. Compared to other people’s struggles, their health problems may not seem so big and insurmountable, which can help them cope with their illness.
Reference:
- Kateřina Ratajová et al. Social support and resilience in persons with severe haemophilia: An interpretative phenomenological analysis, Haemophilia. 2020;26:e74–e80, DOI: 10.1111/hae.13999
