Quality of life in epilepsy (QOLIE): insights about epilepsy and support groups from people with epilepsy (San Francisco Bay Area, USA).

INTRODUCTION: This study evaluated quality of life (QOL) in people with epilepsy (PWE) in the San Francisco Bay Area. METHODS: This was a qualitative study examining QOL through the use of focus groups and of the QOLIE-31-P survey instrument. Six focus groups were conducted to examine self-reported challenges due to epilepsy. Focus groups were conducted for individuals who did and did not attend support groups. RESULTS: Individuals with epilepsy reported substantial difficulties with finances, physical and psychosocial functioning. Also, limited knowledge about services and relatively negative feelings toward self were common among newly diagnosed participants. CONCLUSION: Many of the issues surrounding QOL and challenges were shared across groups. Epilepsy-related social services appeared to be useful in helping PWE cope and in increasing PWE's awareness of key enabling services. Although many individuals with epilepsy reported poor QOL and other challenges, epilepsy-related services may be under-utilized due to a lack of awareness.

Knowledge, attitudes, and practice toward epilepsy (KAPE): a survey of Chinese and Vietnamese adults in the United States.

We conducted, in four languages, the first national cross-sectional survey of the knowledge, attitudes, and practice with respect to epilepsy of Chinese- and Vietnamese-American adults. We used a convenience sampling method to recruit 2831 adults in seven states. Eighty-four percent had heard or read of epilepsy and 58% had seen a seizure, whereas only 34% knew someone with epilepsy. Forty-two percent would object to their children marrying a person with epilepsy, and 43% would not knowingly hire someone with epilepsy. We examined bivariate associations for questions of knowledge, attitudes, and practice with age, gender, ethnicity, nativity, language, and education. chi(2) analyses showed differences in knowledge of and attitudes toward epilepsy by age group, gender, ethnicity, and education. Although misconceptions and negative views about epilepsy are held by Chinese and Vietnamese populations living in the United States, our results show noteworthy differences in attitudes and practice in relation to previous studies in Asian countries.

Medicaid Expansion and Healthcare Access: Lessons from Asian American and Pacific Islander Experiences in California.

Medicaid coverage increases access to care and improves health outcomes for disadvantaged populations. Yet disparities in enrollment and access to care persist. To understand the facilitators and barriers of Medicaid enrollment and accessing care under the Affordable Care Act for disadvantaged Asian Americans and Pacific Islanders. Focus groups and key informant interviews were conducted. Informational barriers to accessing care were pervasive among most new enrollees. Immigrants with limited English proficiency experienced disproportionate difficulties in enrolling and accessing care post enrollment. The simplified, income-based Medicaid eligibility streamlined the enrollment process, but system errors in determining Medicaid eligibility denied coverage for some eligible individuals. To improve access to care, health plans, government agencies, and community organizations might coordinate more closely. Federal and state laws that mandate language assistance by health plans might be enforced to improve access to care for linguistic minorities.

Identifying vulnerable Asian Americans under Health Care Reform: working in small businesses and health care coverage.

Working in small businesses has been identified as a key factor for low coverage rates in immigrant communities. In this study, we identify specific cultural and socioeconomic predictors of Asian Americans who work in small businesses to identify subgroups at a greater disadvantage than others in obtaining health insurance. Logistic regression models were fitted using a sample of 3,819 Asian American small business owners and employers extracted from pooled 2005­2012 California Health Interview Survey data. We found that individuals with low income levels, Korean Americans, U.S.-born South Asian and Southeast Asian (other than Vietnamese) Americans, immigrants without citizenship (particularly those lacking a green card), and individuals with limited English proficiency had higher odds of lacking coverage. The odds of being uninsured did not differ between small business owners and employees. Based upon these key findings, we propose several strategies to expand coverage for Asian Americans working in small businesses and their most vulnerable subgroups.