title: [The health-within-illness experience: an encounter between the suffering and the power to exist for adults living with systemic scleroderma].
abstract: 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. The 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 emerged showing the essence of the experience of health-within-illness. The two essences were interrelated in order to develop a conceptualisation of the experience of health-within-illness in adult Quebeckers living with systemic sclerosis. This new conceptualisation of the experience of health- within-illness can contribute to a renewal of health care practice.
authors.forename: Édith
authors.initials: É
authors.lastname: Ellefsen
authors.forename: Chantal
authors.initials: C
authors.lastname: Cara
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D002908:Chronic Disease; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010358:Patient Participation / Q000523:psychology; D011792:Quebec; D012595:Scleroderma, Systemic / Q000451:nursing / Q000523:psychology*; D013315:Stress, Psychological / Q000451:nursing; D011795:Surveys and Questionnaires