Lived experience highly valued
Tobah, who works with newcomer women through support groups run at LIHC, said it’s crucial to look at lived experiences of discrimination, xenophobia, sexism and bias that can impact health care. Those mothers are navigating maternal and newborn care while cut off from their familial and support systems after moving to Canada.“It’s also important to understand how we as a society perceive individuals who come from the Middle East, (including) discrimination in different forms, and varying perspectives that are embedded in our pop culture, that our health-care providers might carry – unknowingly, even – that impact the quality of care women receive when they’re going to give birth,” Tobah said. She hopes the Mom2New Co-Care project will improve the health care people receive and ultimately boost health outcomes. London and Ottawa are good research locations because they have been landing hubs for newcomers, especially over the last year, Modanloo said. Participation – and leadership – of women at the centre of the research is a key element of the project. Modanloo calls it a “community-led initiative.” “There is this big saying in health research, ‘nothing about us without us.’ I thought that might not be enough anymore,” she said. “A lot of health initiatives include patient voice as part of the group, but still the leadership of the teams is not from the community. I thought, maybe we should change that to ‘nothing about us that is not led by us.’” She wants every woman involved to have a voice and even more, play a role in how the research is conducted. Many of those involved have historically not felt “heard” when accessing health care, Modanloo said. Interviews and group meetings are conducted in Arabic, Farsi (Dari) or Pashto. Women are empowered to share reflections in interesting ways, too, such as using art, photos and meaningful objects. The cultural and community connections result in stronger research, she said. “As a nurse researcher, they have come to me multiple times saying ‘can you talk to my nurse about this?’ When I said, ‘why don’t you talk directly to the nurse?’ they’d say ‘but you’re one of us, you know what I’m saying,’” Modanloo said. There’s often a large power imbalance, as women seeking maternal or newborn care may have only temporary residency status or no status at all, may not speak English and may be coming with a history of trauma and violence. “That interconnected lens to look at the identity of these people became the main source of theory to write this grant and do the analysis of the data,” Modanloo said. Service providers and women with lived experience who share their time and personal insights are properly compensated for their contributions, another principle important to Modanloo. Tobah said the way Modanloo has integrated community voices should help inform best practices. “There’s a research team as well as a community team – both of those working together from the start is really important. Everybody is brought to the table and has an impactful voice as to how the project evolves. The community piece isn’t an afterthought, it’s really embedded throughout.”“You’re far away from your mom, your neighbour, your grandmother – the people that would be providing support about what pregnancy looks like and how to take care of a newborn.” – Selma Tobah, PhD candidate and community development worker












