Rare and chronic diseases profoundly affect the lives of those diagnosed and their families. While medical and clinical research strives to improve the future for those impacted, pressing questions remain about how to ease the challenges of living with these illnesses today.
In collaboration with patient organisations such as DEBRA Austria, the HEALTH Lab research team is conducting an interview study to explore the effects of these conditions on quality of life and health identity. Under the leadership of DDr. Gudrun Salamon, an interdisciplinary team of psychologists and medical professionals is investigating the relationship between quality of life and health identity in the context of:
- Chronic diseases
- Rare diseases
- The rare condition epidermolysis bullosa (EB)
Epidermolysis bullosa, often referred to as the disease of the “butterfly children,” is a rare genetic disorder that leaves the skin as fragile as butterfly wings. It is currently incurable.
As part of this project, opportunities for master’s theses (and potentially doctoral theses, subject to discussion) are now available, starting as early as January 2025.
Are you a psychologist or medical doctor in training eager to contribute your expertise? The project is actively seeking individuals to complete their final thesis while engaging in collaborative research within a supportive team setting. Intensive supervision will be provided. The research aims to identify and analyse the strategies and support systems that those affected and their families find most beneficial in managing their conditions. The study employs mixed methods, incorporating qualitative, quantitative, and integrated approaches.
If you are interested in joining this impactful initiative, please reach out to DDr. Gudrun Salamon via email at gudrun.salamon@sfu.ac.at.