Navigating the health-care system in community: Perspectives from Asian immigrant parents of children with special health-care needs.

Children with special health-care needs (CSHCNs) face notable barriers to health-care access and to receiving quality and family-centered care, despite higher health-care utilization rates. Within the population of CSHCNs, there are significant inequities in health-care quality impacting immigrants who have migrated to the United States. However, little is known about the experiences and needs of Asian immigrant families who have CSHCNs. This study aimed to explore how Asian immigrant parents of CSHCNs view their child's health-care access, quality, and utilization. We conducted semi-structured qualitative interviews with 22 Vietnamese- and Cantonese-speaking parents of CSHCNs. Participants were recruited through community partners. Interviews were transcribed, translated, and coded using content analysis. Participants were generally satisfied with their children's care and had strong relationships with their primary care doctors who were often culturally 'matched'. However, participants experienced several important and culturally specific barriers, including gaps in their understanding of the health-care system, language barriers, and a sense of alienation. Parents frequently turned to informal and community supports for assistance in navigating the US health-care system. Further research to understand the drivers of health disparities and policy level solutions is warranted.

Reproductive Cancer Treatment Hospitalizations of U.S. Women With Intellectual and Developmental Disabilities.

There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with and without IDD. Discharges linked to women with IDD had higher incidences of cancer of the uterus and lower prevalence of cancer of the cervix. Moreover, discharges linked to women with IDD indicated these women were younger, had longer hospital stays, and were more likely to have public insurance coverage. Therefore, further research and targeted interventions to increase cancer prevention and screening are urgently needed.

Disparities in Health Care Quality among Asian Children with Special Health Care Needs.

There is a dearth of information on the quality of health care for Asian American children and particularly Asian children with special health care needs (CSHCN). The goal of this article was to determine whether there were disparities in quality of health care for Asian CSHCN, whose experiences have not been studied. Data were derived from the 2009-2010 National Survey of Children with Special Health Care Needs (ns = 355 non-Hispanic Asian children and 4,343 non-Hispanic white CSHCN). Bivariate and multivariate logistic regression analyses were conducted to examine the relationship between racial identity (that is, non-Hispanic white and non-Hispanic Asian) and quality of health care. Racial disparities in quality of health care were substantial between Asian and white CSHCN in 2009-2010. Asian parents were significantly less likely than white parents to report that their health care provider provided the specific information they needed, helped them feel like a partner in their child's care, and was sensitive to the family's values and customs. The development and testing of specific, targeted policy and practice interventions to reduce disparities in health care quality for these children are urgently needed.

Consumers' and workers' perspectives about consumer-directed services in the United States.

BACKGROUND: Consumer direction is a service delivery model that shifts decision-making from agencies to the individuals they serve. Using government funding, consumers hire, supervise, and schedule their own staff and maintain control over the delivery of their services. OBJECTIVE: This study sought to understand the process of consumer direction as well as the experiences and perspectives of both the consumers and employees. The study also sought to better understand if and how consumer direction allows the consumer to direct his or her life, the impact consumer direction may have on the individual's health and health care, and how employment in consumer directed programs impacts the workers providing direct care services. METHOD: This qualitative study included interviews with consumers (N = 20) and workers (N = 15) in Virginia, a southern state in the US. Semi-structured phone interviews were conducted by one member of the research team and transcribed and coded for themes by the research team using grounded theory methodology. RESULTS: Consumers reported greater control over their services and increased access to health care, compared to what they previously received with traditional services. Conversely, consumers reported challenges in managing their staff and fulfilling the role of an employer. Employees reported a lack of training prior to starting their jobs, as well as an inability to live off on low hourly wages. Still, the majority of employees reported job satisfaction and fulfillment. CONCLUSION: Policymakers should expand and strengthen the consumer directed program.

Pregnancy Outcomes Among U.S. Women With Intellectual and Developmental Disabilities.

The existing research on pregnancy outcomes for women with intellectual and developmental disabilities (IDD) is sparse. This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared deliveries among women with IDD (n = 340) to the general obstetric population. Women with IDD had longer hospital stays and were more likely to have Caesarean deliveries in contrast to other women. Rates of adverse pregnancy outcomes were elevated for women with IDD across a range of measures, including early labor, preterm birth, and preeclampsia, and their infants were more likely to have low birth weight, even after adjusting for age, race, ethnicity, and insurance type. Targeted interventions are needed to address these deleterious outcomes.