Perinatal care experiences of mothers living with HIV in Ontario, Canada

ABSTRACT

Women living with HIV (WLWH) are increasingly having children yet face complex medical and psychosocial issues in the perinatal period. The HIV Mothering Study sought to understand the psychosocial experiences and needs of mothers living with HIV across Ontario, Canada. The present study was a sub-analysis of interviews conducted with WLWH during pregnancy (n = 67) and at 3 months postpartum (n = 65) and aimed to describe the health care experiences of WLWH during the perinatal period. Narrative analysis revealed positive and negative health care experiences of WLWH and highlighted how relationships with providers affected women’s experiences navigating care. Positive care experiences were characterized by effective communication, feeling a sense of belonging, being heard, and accessible care. Negative care experiences were characterized by a lack of communication, silencing of mothers’ voices and experiences, stigmatizing care, and disregard for HIV confidentiality. Implications for practice, policy, and research across individual, service, and macro systems are discussed.

KEYWORDS:

• health care
• HIV
• mothers
• qualitative
• women

Acknowledgments

The authors wish to thank all the mothers living with HIV who participated in this study. The following individuals are acknowledged for their contribution to the HIV Mothering Study: Dr. Jonathan Angel, Dr. Ari Bitnun, Dr. Jason Brophy, Dr. Jeff Cohen, Dr. Greg Gamble, Dr. Kevin Gough, Dr. Andree Gruslin, Dr. Lydia Kapiriri, Dr. Charles Laporte, Dr. Hugues Loemba, Ms. Shari Margolese, Ms. Khatundi Masinde, Dr. Kellie Murphy, Dr. Jeff Powis, Dr. Corinna Quan, Dr. Janet Raboud, Dr. Anita Rachlis, Dr. Edward Ralph, Ms. Robyn Salter, Dr. Lindy Samson, Dr. Roger Sandre, Dr. Sandi Seigel, Dr. Mike Silverman, Dr. Fiona Smaill, Dr. Sharon Walmsley, Dr. Wendy Wobeser, Dr. Mark Yudin, Dr. Anne-Marie Zadjlik, Cheryl Arneson, Fatimatou Berry, Kerrigan Beaver, Jennifer Bowes, Gloria Crowl, Janette Cousineau, Adri D’Aquila, Marisol Desbiens, Leanne De Souza, Dawn Elston, Sharon Fair, Kim Foshay, Jenna Ekborn, Michele Ellis, Roberta Halpenny, Sheryl Hewko, Jennifer Lalonde, Judy Latendre-Paquette, Elaine Lefaive, Georgina MacDougall, Mary-Jean Martin, Nancy McFarland, Anja McNeil, Linda Moran, Isabelle Seguin, and Danielle Tardiff. The authors also acknowledge the Ontario HIV Treatment Network and the Canadian Institutes of Health.