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Updated: May 27, 2026

Imaging Features of Systemic Sclerosis-Associated Interstitial Lung Disease
04:44

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Published on: June 16, 2020

Living with scleroderma: patients' perspectives, a phenomenological study.

Fatma Ilknur Cinar1, Vesile Unver, Sedat Yilmaz

  • 1School of Nursing, Gulhane Military Medical Academy, 06018 Etlik, Ankara, Turkey. filknur@yahoo.com

Rheumatology International
|November 18, 2011
PubMed
Summary

Scleroderma patients face significant physical, emotional, and social challenges. Strong social support significantly improves coping abilities and optimism for individuals managing this chronic condition.

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Area of Science:

  • Rheumatology
  • Qualitative Health Research
  • Patient Experience Studies

Background:

  • Scleroderma significantly impacts patients' daily lives, affecting physical, emotional, and social well-being.
  • Understanding patient experiences is crucial for developing effective support strategies.

Purpose of the Study:

  • To explore the lived experiences of scleroderma patients.
  • To identify the key challenges and coping mechanisms associated with scleroderma.

Main Methods:

  • Qualitative study involving 16 scleroderma patients.
  • Data collected through demographic forms and semi-structured interviews.
  • Phenomenological analysis using Colaizzi's method.

Main Results:

  • Identified four impact categories: physical, emotional, social, and coping behaviors.
  • Physical impacts include skin tightness, joint limitations, fatigue, and swelling.
  • Emotional impacts involve disappointment and fear, while social impacts lead to isolation.
  • Social support enhances coping and optimism; advanced patients may avoid peer interaction.

Conclusions:

  • Scleroderma imposes multifaceted difficulties on patients.
  • Sustained social support is vital for improving patient coping mechanisms.
  • Developing effective social support systems is recommended for advanced-stage patients with visible deformities.