Momina Khan1, Hilary K Brown2, Yona Lunsky3, Kate Welsh4, Susan M Havercamp5, Laurie Proulx4, Lesley A Tarasoff6. 1. Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada. 2. Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada; Department of Health and Society, University of Toronto Scarborough, Toronto, Ontario, Canada. Electronic address: hk.brown@utoronto.ca. 3. Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health, Toronto, Ontario, Canada. 4. Department of Health and Society, University of Toronto Scarborough, Toronto, Ontario, Canada. 5. Nisonger Center, The Ohio State University, Columbus, Ohio. 6. Department of Health and Society, University of Toronto Scarborough, Toronto, Ontario, Canada; Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health, Toronto, Ontario, Canada.
Abstract
BACKGROUND: Accessible and quality care during the perinatal period is critical for optimal maternal and neonatal health. Using the socio-ecological model, the purpose of this study was to explore barriers and facilitators that shape the perinatal care experiences of people with intellectual and/or developmental disabilities (IDD). METHODS: Semi-structured interviews were conducted with 10 individuals with IDD in Ontario, Canada, who had given birth within the past 5 years. Interviews focused on care experiences before, during, and after pregnancy. Data were analyzed using a directed content analysis approach, and the socio-ecological model guided analysis. RESULTS: Barriers at the societal (e.g., cultural norms of motherhood), policy/institutional (e.g., child protection policies and practices), interpersonal (e.g., inadequate formal and informal support), and intrapersonal levels (e.g., internalized stigma) contributed to participants having negative perinatal care experiences. Conversely, we identified facilitators on the interpersonal level (e.g., positive interactions with perinatal care providers and familial and social service supports) as positively shaping participants' perinatal care experiences. CONCLUSIONS: Findings reveal that the perinatal care experiences of people with IDD are shaped by several interrelated factors that largely stem from societal-level barriers, such as dominant (stigmatizing) discourses of disability. To improve the perinatal care experiences of people with IDD, there is a need for interventions at multiple levels. These include the development of policies to support perinatal care for diverse populations and training care providers to enact policies at the institutional and interpersonal levels.
BACKGROUND: Accessible and quality care during the perinatal period is critical for optimal maternal and neonatal health. Using the socio-ecological model, the purpose of this study was to explore barriers and facilitators that shape the perinatal care experiences of people with intellectual and/or developmental disabilities (IDD). METHODS: Semi-structured interviews were conducted with 10 individuals with IDD in Ontario, Canada, who had given birth within the past 5 years. Interviews focused on care experiences before, during, and after pregnancy. Data were analyzed using a directed content analysis approach, and the socio-ecological model guided analysis. RESULTS: Barriers at the societal (e.g., cultural norms of motherhood), policy/institutional (e.g., child protection policies and practices), interpersonal (e.g., inadequate formal and informal support), and intrapersonal levels (e.g., internalized stigma) contributed to participants having negative perinatal care experiences. Conversely, we identified facilitators on the interpersonal level (e.g., positive interactions with perinatal care providers and familial and social service supports) as positively shaping participants' perinatal care experiences. CONCLUSIONS: Findings reveal that the perinatal care experiences of people with IDD are shaped by several interrelated factors that largely stem from societal-level barriers, such as dominant (stigmatizing) discourses of disability. To improve the perinatal care experiences of people with IDD, there is a need for interventions at multiple levels. These include the development of policies to support perinatal care for diverse populations and training care providers to enact policies at the institutional and interpersonal levels.
Authors: Ami Tint; Hilary K Brown; Simon Chen; Meng-Chuan Lai; Lesley A Tarasoff; Simone N Vigod; Susan Parish; Susan M Havercamp; Yona Lunsky Journal: Autism Date: 2021-01-19
Authors: Eric Rubenstein; Deborah B Ehrenthal; David C Mallinson; Lauren Bishop; Hsiang-Huo Kuo; Maureen Durkin Journal: PLoS One Date: 2020-10-27 Impact factor: 3.752