Autonomie des femmes atteintes du syndrome des ovaires polykystiques : entre gestion de la maladie et approche restaurative de la santé
Polycystic ovary syndrome (PCOS) is the most common endocrine disorder in women of childbearing age. It has a significant impact on quality of life and is one of the major causes of infertility. It is also associated with serious chronic conditions such as type 2 diabetes, hormonedependent cancers, and cardiovascular disease. While it is prevalent and has serious consequences, women's experience of care reflects problematic dimensions: lack of awareness and information, delays in diagnosis, insensitivity, inattention, and trivialization. Research shows that women are dissatisfied with commonly prescribed treatments such as the contraceptive pill. They report lacking treatment options and would be interested in other modalities of care. Research on PCOS also emphasizes the importance of lifestyle (e.g. nutrition and stress management) that can improve the metabolic and endocrine profile and have a positive impact on reproductive function. The general lack of attention to this condition is thus an interesting case study, reflecting systemic injustices in medicine. The objective of this thesis is to examine issues related to the autonomy of women affected by PCOS in the context of health care and fertility, and to propose ways to promote the expression of autonomy. The thesis analyzes these issues in the context of chronic disease, whereby treatment focuses on alleviating infertility and neglects restorative approaches to health, particularly through effective lifestyle changes. The analysis is based on the conceptual framework of relational autonomy, and considers two possible modes of autonomy expression: episodic and programmatic. Awareness of these issues makes it possible to reflect on what a holistic approach could bring to PCOS care, considering both disease management and a restorative approach to health. To consider the ethical challenges related to the care of PCOS, this thesis employs both a conceptual-normative and an empirical perspective. Both allow a better understanding of the shortcomings of the current medical approach and an informed recommendation for better ways of responding to these challenges. By recognizing the need for prevention and management of PCOS, as well as a restorative approach to health, this thesis has substantial implications for healthcare professionals and women, suggesting ways of supporting both episodic and programmatic autonomy and empowerment of affected women.
Empowerment Recherche narrative Polycystic ovary syndrome (PCOS) Autonomy Empowerment Feminist perspective Narrative research Disease management Restorative approach to health