Chinese-Elders Study Belies Top-Down “Parachute” Research Lumping All Asians

Chinese-Elders Study Belies Top-Down “Parachute” Research Lumping All Asians

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Photo: PINE study research assistant Ruijia Chen interviews Yong Gui Lee, a study participant.

WASHINGTON, D.C.--Experts in aging are seeing new research on older Chinese Americans’ mental health issues that was presented at a major conference recently as an innovative approach to studies on Asian Americans.

"[Previous studies] looked at several different subgroups of Asian Americans and that's cutting the pie too thin," said E-Shien Chang.

Chang is the research manager of a community-based, participatory research effort to document the psychosocial well being of Chinese American elders in the Chicago area. Her research group is called the PINE study. (The acronym is from the Population study of ChINese Elderly.)

Not Just Guinea Pigs

Most previous studies have been done by "parachute researchers," Chang said, academics who collect data without truly understanding the dynamics of a community. The subjects never hear back from the researchers ever again. "These [elders] don't want to be guinea pigs," she stressed.

Striking results of the PINE study were presented at the Gerontological Society of America Annual Scientific Meeting, in Washington, D.C., in November. The PINE study group went beyond mere data collection to work closely with Chinese older adults--often helping many in need.

Existing studies commonly lump together a variety of Asian American groups, such as South Asians, Chinese and Filipinos. But experts say the results are often superficial while suggesting meaningful conclusions can be drawn from disparate data as a whole--when there really isn't.

The Chinese population in the U.S. is the oldest and largest Asian subgroup, accounting for 24 percent of all Asians. There are an estimated 3.5 million Chinese living in the U.S. and about 60,000 in Chicago.

The PINE study’s lead researcher  XinQi Dong, MD, of Rush University Medical Center, where he is associate director of the Rush University Institute for Healthy Aging, realized there needed to be better data to understand how best to help elders he observed when he volunteered at the Chinese American Service League (CASL).

During stints at CASL, the largest social service agency in the Midwest serving Chinese Americans, Dong could see anecdotal evidence of the mental distress and health issues of Chinese Americans that the medical community had not yet grasped. He wanted to find a way to document those issues.

As Chang said, "Without the data, we can't prove the need."

Specific Racial, Ethnic Research

In 2010, Dong received a $1 million grant from the National Institutes of Health to develop the community-research partnership with CASL.

In an announcement then, Dong stated, "As the U.S. population grows more diverse, it is imperative from a public health perspective that we have an accurate understanding of the health issues of specific racial and ethnic populations."

The PINE study group also has a community advisory board including a colorful crew of an optometrist, three community center leaders, two health advocates, a physician and two seniors.

The investigators felt strongly about making sure the elderly subjects understood the project. “We tried to use the word ‘research’ at first,” Chang said. “But the word ‘research’ translates in Chinese to something that’s far removed and abstract. It’s not warm.”

Eventually the researchers settled on a description that emphasized to the subjects how the data would benefit the community, their families and future generations.

The researchers also realized the importance of allowing subjects to communicate in their native tongue. Many of the research assistants are not only fluent in Mandarin Chinese, but many of them speak other dialects (Cantonese, Taiwanese, and Taishanese).

Every research assistant spends two or more hours with each senior. Research assistants are instructed on how to answer questions about health that the elders might have instead of simply asking research questions.

“We don’t administer the health services, but we do try to help and connect them to professionals whenever we can,” Chang said. “It’s part of the long-term relationship we’re building.”

She reported, for instance, that one of her research assistants helped a subject reconnect his cell phone service after it got disconnected. Another research assistant had to call for emergency services after she found an elderly resident had collapsed on the floor with no one to hear her cries for help.

Phenomenal Results

The results of the PINE study’s approach have been phenomenal. In their last year of data collection they’ve been able to get 3,000 data sets. Instead of looking at diagnostic criteria (for example, asking if a subject has experienced depression), researchers looked at symptoms.

The research has yielded a more holistic and comprehensive profile of the Chinese American elders in the Chicago area, an important published studies. In 2013, the PINE study group did something rare in academia.

Rather than holding findings important for Chinese American elders to know about until after publication in a prestigious journal, they released the results in a community report. “We wanted to be accountable to the public,” Chang said. The researchers were then able to go back to the research participants, let them flip through the 48-page book and show them the results of the initial data collection.

In recent years, community-based participatory research has cropped up in education, urban-development and medical research. But the PINE study shows just how important the research method is in order to access and truly understand the increasingly diverse communities of America.

Some of the challenges that researchers face when studying diverse populations is accessing the communities themselves.

The Chinese American community, for example, tends to be scattered around suburban neighborhoods. But because the PINE study engaged the community it was able to recruit participants by simple word of mouth. According to its website, the PINE study has been able to recruit 3,018 older adults with a response rate of 91 percent.

Overcoming Mental-Health Stigma

There are other benefits to community-based research. In the research for this article, experts and advocates for seniors repeatedly said that Asian American elders don’t want to talk about mental health.

“We have to disguise mental health programming. We’ll bring a licensed social worker to talk about something unrelated and maybe put in something about anxiety or depression.” said Anni Chung, president and CEO of Self-Help for the Elderly, a San Francisco nonprofit providing social services to low-income Asian American seniors.

But the researchers at PINE have found another way to get older Chinese Americans to talk about mental illness.

By involving the community in the actual design of their investigation and patiently gathering data from the ground up, the PINE study investigators were able to engage in a dialogue with elders in ways that helped Chinese Americans see past the stigma and understand what mental health meant. In the process, the researchers have recruited the older Chinese Americans not only as study subjects, but also as research partners.

Jenny Chen wrote this article for Aisan Fortune as part of a fellowship from New America Media and the Gerontological Society, sponsored by AARP.