Blazing a Trail: a Constructivist Grounded Theory Study of the Experiences of Canadian Women with Endometriosis

Abstract

<p>The purpose of this constructivist grounded theory study was to explore women's experiences with endometriosis through diagnosis, treatment, and coping. Conducted using a health geography, medical sociology, and medical anthropology theoretical framework and a constructivist grounded theory methodology, the following research objectives guided this study: (a) document the experiences and consequences of receiving a medical diagnosis of endometriosis from the perspective of a group of women living in Hamilton, Ontario; (b) explore the iterative process the women experienced while seeking relief from the symptoms of endometriosis; (c) interpret the meaning of 'coping' that women on the journey for a reliable diagnosis and effective treatment for endometriosis experienced; and (d) formulate a coherent, middle-range interpretive substantive theory of the women's journey, in order to help others better understand the endometriosis experience from the patient's perspective.</p> <p>Seventy women were interviewed, and the middle-range substantive theory that emerged from this study is grounded in their experiences. The results indicate that the women experienced endometriosis as a journey through constant interaction with the social worlds they had defined through diagnosis, treatment, and ultimately coping. Studying their everyday life experiences and mapping those in the context of their biomedical, personal, and informational social worlds allow for a broader understanding of the varying ways that the women interviewed perceived the treatment processes and their treatment options, made sense of their symptoms, and experienced uncertainty about the influence change could have on their everyday lives. By incorporating their individual experiences and knowledge, their social world and descriptions of these worlds reflect the entirety of the endometriosis experience. Finally, if one examines endometriosis only from the perspective of being diagnosed, treated, and learning to cope with the disease, many facets of the journey are missed. Understanding these individual experiences as a journey, instead of just diagnosis, treatment, and coping, has practical implications for healthcare providers treating endometriosis.</p>