L'expérience de sclérodermie systémique et de santé-dans-la-maladie pour des adultes : une étude phénoménologique existentielle herméneutique

With a view towards eliminating the existing dichotomy between illness and health, the concept of health-within-illness appeared in nursing research on health in persons living with chronic disease. Presently, research on this phenomenon is mainly centred on the experience of wellness not revealing that of illness. At the same time, few studies have been aimed at understanding the coexistence of the experience of wellness and illness involved in the daily lives of persons with chronic disease. Furthermore, none have addressed a population living with systemic sclerosis. Consequently, the purpose of this study is to describe and understand the experience of systemic sclerosis as well as that of heath-within-illness in adults living with this chronic disease. The disciplinary perspective of the researcher, in this case, Watson’s human caring philosophy (1979, 1988, 2006, 2008), supported the research process. In accordance with this author, van Manen’s (1984, 1987, 2002) hermeneutic existential phenomenological method 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, that is: (a) endless suffering of a diseased body; (b) the inner and relational disharmony of the self; (c) the process of adjustment and (d) adjustment heuristics. On the other hand, the following two themes emerged showing the essence of the experience of health-within-illness: (a) empowerment of a new self and (b) harmony with life. 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. Thus, it is conceived as a “dialectic in which the new self shifts his or her power to live in harmony with life and to adjust to endless suffering while being in a diseased body that experiences inner and relational disharmony.” The results of this study allow a better understanding of the suffering experienced by persons with systemic sclerosis as well as of the process and strategies conceived to adjust to this suffering. They also highlight the means used to exert a new power on their lives and live in harmony with every aspect of their existence. Finally, the dialectic of health-within-illness that emerged from this study underlines the dynamic, continuous, and subjective character of the integrative process involving the inseparable experiences of wellness and illness. This new conceptualisation of the experience of health-within-illness, that can contribute to a renewal of health care practice, also suggests a novel way of living with chronic disease, that of “being neither in health nor in illness”.

Keyphrases: Chronic illness, Health-within-illness, Experience of health, Wellness, Systemic sclerosis, Hermeneutic existential phenomenology, van Manen's method, Continuity