Investigation of Life Experiences of Women with Scleroderma

OKSEL E. , Gunduzoglu N. C.

SEXUALITY AND DISABILITY, vol.32, no.1, pp.15-21, 2014 (Journal Indexed in SSCI) identifier identifier

  • Publication Type: Article / Article
  • Volume: 32 Issue: 1
  • Publication Date: 2014
  • Doi Number: 10.1007/s11195-013-9334-4
  • Page Numbers: pp.15-21
  • Keywords: Scleroderma, Life experience, Nursing, Turkey


What are the lived experiences of individuals with scleroderma? This study aims to address this question by exploring individuals' personal experiences of living with scleroderma and to present a view of scleroderma patients and their nursing care. This research is an exploratory-descriptive study using a phenomenological research method. Twenty patients with scleroderma were enrolled in this qualitative study. The data were collected using both a demographic data form and a semi-structured interview form. The study was conducted through face-to-face individual patient interviews. The data were evaluated using Colaizzi's phenomenological data analysis method. The data analysis revealed four categories and ten topics. The categories were (a) self-perception, (b) role in relationships, (c) activity and exercise, and (d) sexuality. The results of the research indicate that the subjects' unrefined data reflect self-esteem disturbances, fear, anxiety, altered family and social processes, altered role performance, activity intolerance, fatigue, physical difficulties, and sexual dysfunction. This research provides valuable insights into how patients view the overall impact and their specific degree of scleroderma from day to day. Scleroderma patients experience emotional, physical, and social difficulties. The disruption of sexual life is a prominent result of this study. Although there is no cure for scleroderma and medical interventions have a limited effect, health professionals can improve patients' symptoms and experiences of living with scleroderma by listening to the effects of their symptoms and adapting coping strategies. It is hoped that the themes revealed in this study will generate understanding and insight for future innovative practices.