To explore the experiences and support needs of Black Canadian parents with preterm infants and to engage them in co-creating a culturally informed framework to inform nurses, healthcare providers and community organisations to better serve this population.
Preterm birth (PTB) is a traumatic experience that places significant physical and emotional strain on families and other caregivers. Despite research showing that Black mothers are at risk of PTB, little is known about their experiences of giving birth to a preterm infant and the challenges they encounter caring for these children in Canada. This lack of research specifically on Black parents in Canada makes it difficult to identify their psychosocial needs and develop intervention programmes to address their unique challenges.
A two-phase qualitative exploratory design informed by a community engagement lens will be used.
In Phase 1, five focus groups (n = 48) and 6–8 in depth interviews will be conducted with Black parents of preterm infants. Questions will explore experiences in the NICU, transition home, access to support, coping strategies and mental well-being. One focus group will be conducted with the parent advisory council of the Canadian Premature Babies Foundation, our community partner to explore gaps in services. The data from Phase 1 will be analysed and findings will be used to informed Phase 2 concept mapping exercise. This research was approved by the Toronto Metropolitan University Research Ethics Board.
There is a paucity of research addressing the experiences and needs of Black parents with preterm infants. Thus, this study is well positioned to generate the much-needed Canadian empirical knowledge on the unique experiences and stressors face by Black parents with preterm infants and inform the design of programmes and services to better support them.
This study is in collaboration with the Canadian Premature Babies Foundation, our community partner.
The study aims to explore the experiences of Black Canadian parents following a preterm birth and their perspectives of being in the NICU.
A qualitative design guided by principles of community engagement was used to explore the experiences of Black Canadian parents.
Focus groups and in-depth interviews were conducted with 40 Black parents of preterm infants. A thematic analysis approach was used to organize the data into meaningful themes.
Five major themes were identified through the data analysis: encountering racism and discrimination in the NICU, bearing the emotional weight of staying in the NICU, enduring the feeling of bodily betrayal and guilt, grappling with the turmoil of uncertainty and seeking peer and mental health support programs.
This study provides in-depth understanding of the unique experiences of Black Canadian parents after a preterm birth and the challenges they face navigating the NICU.
Developing a targeted training program for health care providers is critical to address racism and discriminatory practices and enhance parents' sense of belonging in the NICU. Creating Black-focused peer support and accessible mental health care during and after the NICU is critical to address the gaps in programs and services and to promote effective coping.
Addressing racism and discriminatory practice requires urgent attention to promote equity within the NICU environment. Scaling up access to Black peer support and mental health programs will contribute to improving parental wellbeing in Canada and beyond.
This study was in partnership with the Canadian Premature Babies Foundation, our community collaborator.