The health-within-illness experience: An encounter between suffering and the power to exist for adults living with systemic scleroderma

Research
By Édith Ellefsen, Chantal Cara
English

This article presents the results of a study whose purpose was to understand and describe the experience of systemic sclerosis, as well as that of health-within-illness in adults living with this chronic disease. Watson’s human caring philosophy supported the research process. In accordance with this author, van Manen’s phenomenological methodology was chosen as the basis of the research process. Data was mainly collected from the experience of adult Quebeckers living with systemic sclerosis, through 34 in-depth interviews with 17 participants (14 women and three men). The results allowed the identification of four themes that describe, on the one hand, the essence of the experience of systemic sclerosis, and on the other hand, two themes that emerged showing the essence of the experience of health-within-illness. The two essences were interrelated in order to develop a conceptualization of the experience of health-within-illness in adult Quebeckers living with systemic sclerosis. This new conceptualization of the experience of health-within-illness can contribute to a renewal of healthcare practice.

Keywords

  • systemic scleroderma
  • chronic illness
  • suffering
  • health
  • qualitative research
Go to the article on Cairn-int.info