ATLANTA – Research into vaccine hesitancy in the United States tends to focus on overall trends among native-born Americans or immigrants who have mostly assimilated into American culture. But the nation is dotted with tight-knit ethnic communities which have immigrated to the United States, including refugee communities that retain much of the culture and practices of their home country.
Developing interventions to address vaccine hesitancy in these communities may require a significantly different approach than it would in fully assimilated groups, with a need to start by learning about the culture, fears, values and priorities of that particular community.
A 2000 study had shown Somali parents were generally supportive of immunization, but that perception had changed by summer of 2008, explained co-presenter, an immunization clinical consultant at the Minnesota Department of Health Immunization Program. A local TV station ran a story about Somali parents’ concern that a disproportionately higher number of Somali children were in early childhood special education programs for autism.
“In the middle of the report, a parent stated, ‘It’s the vaccines,’ ” Ms. Bahta said. Because they did not have a word for autism in Somali, parents’ online searches led them to groups promoting the misconception that the MMR vaccine and autism were linked. Clinicians in Minnesota began to report Somali parents’ refusal to get their children’s 12-month vaccines. Then a 2011 measles outbreak led the Minnesota Department of Health to look at MMR vaccination rates among local Somalis.
Somalis had a higher rate of MMR coverage in 24-month-old children than did non-Somalis in 2004 – 90%, compared with 84% – according to the. But MMR rates among Somali 24-month-olds began dropping in 2005, reaching 82% in 2007 and 63% in 2009.
“The data we got instilled a bit of panic in the immunization team,” Ms. Bahta said. “Parents were still supporting immunizations, but they weren’t getting that MMR.”
Traditional strategies to increase vaccination – distributing travel immunization information, promoting YouTube videos about immunization and autism, using diverse media for information campaigns – failed.
So they joined with the community and family health department, where co-presenter, is a senior nurse consultant in the Children & Youth with Special Health Needs program. They also hired Somali staff and began to improve their cultural knowledge and competence.
With Somalis, social life revolves around family ties, the community, and faith, explained Ms. Ashkir, a Somali woman herself. Somali culture is based on oral tradition, one that shares information among themselves and provides unsolicited advice to one another, and they persuade each other easily. But issues of health, life, and death are in the hands of Allah only, she said.
“There is a time you will die, whether you are vaccinated or not,” Ms. Ashkir explained. “That doesn’t mean we don’t practice preventive service or health promotion – we do – but at the back of our head, when our time is over, you’re going to go. These are the people we are working with.”
Two other potential obstacles involve Somali beliefs about sin and mental illness.
“We believe if someone is ill, their sins will be cleansed,” she said, explaining why Somalis with minor health problems don’t seek health care. “Parents with kids who have autism keep kids in their apartment until they are 8 years old because mental illness has a negative stigma.”
The Minnesota Department of Health conducted a study on the experience of having a child with autism in the Somali community and discovered four key themes. First, the parents greatly feared autism: Every Somali interviewed said they did not get the MMR because they wanted to avoid autism. Second, parents lacked information about normal child development, autism, and the diseases that vaccines prevent.
“We were expecting parents to identify developmental delays, but parents look not at the development but the growth, at the physical size of the child,” Ms. Ashkir said. And when they learned that the MMR prevented measles – the No. 3 killer of children in Somalia – parents often wanted the shot immediately.
The other two discoveries were that it was impossible to talk about immunization issues in isolation – they were too intricately entwined with discussions about autism – and that Somalis wanted to hear information from respected community sources.
These findings were applied in a pilot program that aimed to improve parents’ knowledge about child growth and development, autism, and vaccine-preventable diseases. Six mothers attended the training program, and tracking their contacts revealed that the information had traveled to 82 other family, friends, and neighbors within the first 3 months. All the women found the program “very helpful” with no negative responses.
The success of this program led to a more comprehensive approach that included training and outreach, engaging the community, disease mitigation and control, and creating and expanding partnerships with organizations such as the state American Academy of Pediatrics chapter, the Somali American Parent Association, the Minnesota Medical Association, and Parents in Community Action.
Training included all-Somali speakers with messages from spiritual leaders and parents of children with autism. Community outreach involved one-on-one conversations among Somalis at information tables in places such as malls, mosques, community centers, and libraries.
“Among this group, there are four parents who have children with autism,” Ms. Ashkir said. “Two of these parents are very, very vocal and talk about their children who have autism, and that they did not give them the MMR. They tell people ‘You have wrong information.’ ”
As of March 2016, the decline in MMR vaccination rates among Somalis had started to flatten. The annual drop of 5%-7% a year in MMR rates became 0.89% last year, which the Minnesota Department of Health finds encouraging.
“Our initial efforts, which included a typical repertoire of public health interventions, were ineffective, so we had to go back and dig deep to understand the core concerns,” Ms. Bahta said. “Our information had to address the core concerns of the community, not what we assumed to be the issue.”
Credibility came from the cultural relevancy of the message, and the fact that those providing the message were parents who had vaccinated their children, she said.
“Each cultural group needs unique approaches, and this is certainly true in this situation – to understand the unique perspective of the community and develop an effective approach required bringing in culturally competent staff and engaging the community,” Ms. Bahta said.