A Western professor’s immigration journey helped to inspire her newest research project on newcomer women from the Middle East and their interactions with the health-care system while pregnant and after giving birth.
Shokoufeh Modanloo, a health sciences professor and maternal newborn nurse, is leading a team of researchers, community workers and women with lived experience to identify the structural barriers that make them wary of the health-care system, or avoid it altogether.
“The trust is not there. They feel their voices don’t count. They feel like they’ve been alienated and counted as ‘other’ in their health-care experiences,” Modanloo said.
“We are taking that critical perspective, to question the status quo (and find out) what is happening at more of a structural level. A lot of the work that we do in health research is to fix a systemic problem with a narrow shot, a shallow intervention. This project is to step away from that approach.”
A three-year, $198,300 partnership development grant from the Social Sciences and Humanities Research Council will provide Modanloo’s team – including advisory committees led by community partners and immigrant women – the chance to dig deep into the structural issues barring equitable maternal-newborn care.
The new funding builds on a $25,000 seed grant from Western Research which enabled the start of the Mom2New Co-Care project. It’s described as a “co-produced research partnership with social, legal and well-being services.”
The team will identify challenges that stop Middle Eastern women from seeking care in Canada and issues that prevent fulfilment of their social and wellness needs. The ultimate goal is a “collective policy action plan” between multiple organizations serving newcomers.
Community partners in London, Ont. include the Cross Cultural Learner Centre and the London Intercommunity Health Centre (LIHC). Other researchers from universities across the province will also lend support.
The unique project approach appealed to Selma Tobah, a community development worker at LIHC and Western PhD candidate in health and rehabilitation sciences. She’s one of the researchers on Mom2New Co-Care.
“I thought it was important and impactful, looking at (the issue) from a structural perspective – the discrimination newcomer women face, and a lot of the barriers to care – which I think is sometimes missing from the health sector. I knew it would add a lot of value,” she said.
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.
“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
“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.”
The roots of the project
Modanloo came to Canada in 2015.
“I was part of this community. When I got here, there was always confusion about how the system works, how to navigate the health-care system or the immigration system. Instead of going to the authorities, a lot of us got together and tried to support one another as peers,” Modanloo said.
That led to a group chat on the instant messaging app Telegram, where newcomer women in Ottawa were connecting. The advice and personal network it enabled was so appreciated and sought after, it grew to a 5,000-person “supergroup” on the app. Later, that network was formalized into a registered charity called PAND Settlement Services (Prosperity, Advancement, Networking and Direction) providing support for newcomers from Iran, Afghanistan and those from other countries who speak Farsi. The organization is led by Kaveh Shakouri, a community research partner on the Mom2New Co-Care project.
Modanloo always wanted to investigate the power of that informal group chat and the invaluable support it provided.
“The complement that we are missing in our health-care initiatives, in our policy-making process, is that component of community,” she said.
“Everything started with me sharing my lived experience.”
Hearing experiences from other Middle Eastern newcomers settling in Ottawa, Ont. lit the spark for Modanloo.
“Most of my career in academia, the reason I even started applying, was the pain and the stories in my own community, newcomer women from the Middle East,” Modanloo said.
“This is a great way I can connect those community-led initiatives and bring my own experiences of being a nurse, applying for immigration, and be the voice of these women in my research.”
