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Life with a rare chronic disease: the scleroderma experience
1University of British Columbia School of Nursing, T-201 2211 Wesbrook Mall, Vancouver, British Columbia V6T 2B5, Canada. joachim@nursing.ubc.ca
Journal of Advanced Nursing
|June 6, 2003
Summary
Living with scleroderma, a rare disease, involves coping with physical symptoms and social stigma. Understanding the experiences of those with visible or invisible signs is crucial for support and care.
Area of Science:
- Rheumatology
- Rare Diseases
- Patient Experience
Background:
- Scleroderma is a rare chronic connective tissue disease with fibrotic changes.
- It presents as systemic or local types, with visible or invisible signs.
- Individuals with scleroderma may face stigmatization due to their condition and perceived differences.
Purpose of the Study:
- To explore the lived experience of individuals with scleroderma.
- To understand coping mechanisms for the disease and social reactions.
Main Methods:
- Focus group interviews were conducted with two groups of individuals diagnosed with scleroderma.
- A moderator and assistant guided discussions using consistent questions for both groups.
Main Results:
- Five themes emerged: physical manifestations, disclosure, living with the disease, striving for normalcy, and future outlook.
- Participants with visible signs disclosed automatically, aware of their difference.
- Those with invisible signs managed information to reduce stigma, while the rarity of scleroderma led to misunderstanding.
Conclusions:
- Healthcare professionals, including nurses, may lack knowledge about rare diseases like scleroderma, potentially leading to stigmatization.
- Enhanced understanding of rare diseases is vital for educating patients on coping with symptoms and social reactions.