“I Am Half of a Person”: Lived Experiences of Individuals Living With Ostomy After Surgery in Rural Haiti

Abstract

Intestinal ostomy can have significant effects on lives and lived experiences. However, limited research exists on the experiences of persons with ostomy in low-resource settings, such as rural Haiti. This study aimed to explore the lived experiences of Haitians with an ostomy, focusing on the physical, psychological, and social aspects of their post-operative lives. We conducted 9 semi-structured, in-depth interviews with participants who had undergone ostomy surgery at the Hôpital Universitaire de Mirebalais in Haiti. Employing interpretative phenomenological analysis (IPA), we iteratively examined transcripts to identify convergent and divergent codes, which were then grouped into themes to better understand the participants’ experiences. Three themes emerged: (a) ostomy as a social disease, which has severe impacts on relationships and place in society; (b) ostomy as altering self-image, leading participants to reflect on their identity and the underlying causes of their condition and to reevaluate their necessities and abilities; and (c) ostomy as an arduous medical journey, characterized by pain, distress, uncertainty, and disillusionment, but also resiliency, improvisation, and hope. This study highlights the multifaceted experiences of persons with ostomy in the low-resource rural environment of Haiti and underscores the need for improved access to medical care, financial support, and psychosocial and caregiving resources for these individuals. Findings also emphasize the importance of medical providers’ improved understanding in making medical decisions, and cultural and socioeconomic factors in developing effective support strategies.