NEW YORK, United States (CMC) — A Jamaican-born researc her in New York wants to understand the experience of Afro-Caribbean people diagnosed with heart failure.

“This issue is driving research with an online focus-group-style study intended to deepen the understanding of the lived experiences of Afro-Caribbean people diagnosed with heart failure,” Donna Fullerton, a research partner at Now What, a Brooklyn, New York-based research company, told the Caribbean Media Corporation (CMC).

“It is a well-established fact that the black community in the US is disproportionately affected by a higher prevalence of heart failure,” she added. “A lesser-known but still fatal condition called transthyretin amyloid cardiomyopathy (ATTR-CM) is a condition in which 90 per cent of the victims are black.

“We are looking to speak with, hear stories from, and understand the nuances within the black community (African Americans, Afro Caribbean), so that future communications and resources around disease awareness and treatment options will be culturally relevant and appropriate and hopefully lessen the health disparities we see today,” Fullerton continued.

“Securing Afro-Caribbean participants, let alone those with heart failure, has proven to be more challenging than usual,” she said.

Fullerton said the search, which is being done across the United States, with emphasis on Miami and New York City, where there is a high concentration of Caribbean immigrants, is for female and male participants between the ages of 45-75.

“First, we want to make it clear that this is not a clinical research study,” she said. “This is a qualitative research study, and we’re interested in collecting stories from people’s lived experiences with heart disease.

“To the capacity that individuals want to talk about related health conditions, such as high blood pressure, obesity, diabetes, etc, and share their experiences, we will listen,” she added. “But we will not be directly studying specific risk factors.”

Fullerton said participants of the research study will receive US$200 compensation for 2.5 hours of engagement.

She said they will be required to answer questions and complete activities over a computer or smartphone, and must be open to participation in a follow-up 75-minute Zoom call for an additional US$150, if they’re selected.