Strengthening life skills for people with haemophilia
Empathy. Self-awareness. Problem-solving. Coping with stress and emotions. These are some of what the World Health Organisation defines as life skills or ‘abilities for adaptive and positive behaviour that enable individuals to deal effectively with the demands and challenges of everyday life.’
Colombia’s third project supported by the Novo Nordisk Haemophilia Foundation sets out to strengthen life skills among people living with haemophilia and their families. The project objectives also aim to sensitise healthcare professionals from 10 hospitals in the region to comprehensive care models and improve knowledge of teachers, to promote better education and integration of children with bleeding disorders.
Treating the person, not just the disease
Life skills are essential for people with chronic illnesses, and more important than ever during a pandemic. The NNHF project team from the departmental patient organisation, Liga Antioqueña de Hemofilicos (LIHEA), in Medellin took advantage of distributing protective equipment to the haemophilia community to determine how best to reach out to them with information on life skills. By analysing the families’ access to the internet, the team were also able to gain important insight in view of developing a digital platform to share information and training.
Several ‘Habilidades para la Vida’ (HAVI) training sessions were organised in schools along with the development and publication of virtual education materials throughout 2020. Based on feedback from the haemophilia community, the emphasis on treating people in a holistic way is highly appreciated.
“The HAVI project gave us the opportunity to expand our knowledge about life skills and interact with different people, putting into practice what we learned. We are grateful to LIHEA for enabling us to be part of this great family, for sharing skills that enable people with bleeding disorders to live fully and with the ability to put ourselves in the place of others,” says a member of the Álvarez Porras family.
“Strengthening life skills has enabled me to strengthen my relationships with others while also finding peace of mind within myself,” says Brandon Alexis Lopera, who lives with severe haemophilia B.
In addition to adapting to the ongoing pandemic situation with online training sessions for healthcare professionals early in 2021, the Colombia 3 project team are working on a strategic collaboration with the University of Medellin for the development of their digital platform and mobile app. The goal is to ensure easy access to information on haemophilia and life skills in Colombia and beyond.