Silvia and Juan Gonzalez moved to the United States in search of work. Because they did not speak English, they were limited in the jobs they could find. Juan works for a landscaping firm during the spring, summer and fall and then tries to pick up work with a painting company he knows in the winter. Silvia has been able to find work with a company that cleans offices at night and works full-time, receiving health care benefits. While they both have learned some English, their long hours at work and the fact that all of their fellow-workers speak Spanish have limited their progress.
Juan and Silvia had little experience with the health care system in the United States. In their home country, people only went to the doctor when they were very sick. Then they could go to the clinic for little or no fee. They had not used the health care system in the United States for themselves, since they were young and healthy. Once, when Juan cut his hand on a pruning shear, he went to the emergency room of the local hospital, but that was all.
All of that changed when Silvia became pregnant with their first child—their daughter Rosa. People kept telling her that she needed to see the doctor as soon as possible to make sure she and the baby were healthy. During an ultrasound exam at 24 weeks of pregnancy, the doctor noticed a problem—the baby seemed to have a neural tube defect—spina bifida. Working with a trained medical interpreter, the doctor tried to explain the problem to the Gonzalez family. The doctor talked about a “high lesion” and looked very worried. Silvia and Juan were not sure what their doctor meant, but were very frightened. The nurse gave them some pamphlets about spina bifida at the end of the appointment. Even though the pamphlets were in Spanish, all the medical terms and descriptions were confusing to the young couple.
Working with Linguistically Diverse Populations: Tips for working with interpreters
Health Literacy (2008), by Penny Glassman, Technology Coordinator, National Network of Libraries of Medicine. This resource includes a definition of health literacy, information about the component skills, statistics populations vulnerable to health literacy issues, and research findings about the impact of health literacy on specific courses of treatment. Retrieved May 28, 2009 from http://nnlm.gov/outreach/consumer/hlthlit.html
Health Literacy Improvement (2008), Compiled by the US Department of Health and Human Services, this resource frames health literacy improvement in terms of recommendations from the Healthy People 2010 national health objectives. This site includes guides to health literacy for specific demographic groups, government resources, and research reports. Retrieved May 28, 2009 from http://www.health.gov/communication/literacy/default.htm
Once Rosa was born, the Gonzalez family had to deal with a whole set of systems—health, early intervention, their health plan, etc. Their limited English skills made these interactions challenging. Silvia kept working to keep their health insurance. There were so many appointments and Rosa was afraid that if she took off too much time, she would lose her job and their health insurance. So they decided that Juan would have to take charge of keeping these appointments. This decision meant that Juan’s income is dramatically reduced. Their dream of making money, sending it home and becoming more successful is not working out.
With Juan’s ability to work decreased, the family struggled. Like 84.75% of children with special health care needs whose families speak primarily Spanish, Rosa lives below 199% of Federal Poverty Level (FPL). See Percent of CSHCN Living Below 199% of Federal Poverty Level graph below.
Rosa is like 25.1% of children with special health care needs from primarily Spanish speaking Hispanic families who experience financial problems due to their child’s health needs—significantly more than other groups—see Percent of Children with Special Health Care Needs Whose Families Experienced Financial Problems Due to their Child's Health Needs
Payer of Last Resort: Medical Debt and Financial Hardship among Children and Youth with Special Health Care Needs, Health and Disability Working Group.
While the Gonzalez family did have insurance, a big factor was the fact that Juan had to cut back on his work. Rosa is like 46.4% of Hispanic children with special health care needs in families who speak primarily Spanish who had a family member cut back on work or stop working altogether. In comparison, 26% of children with special health care needs in primarily English-speaking Hispanic families and 21.6% of non-Hispanic children with special health care needs have had family members who had to cut back on or quit work (a statistically significant difference.) See Percent of CSHCN Whose Families had to Cut Back on or Quit Work Due to Child's Health Needs graph below.
In addition to the financial challenges presented by caring for Rosa, the Gonzalez family struggle to feel supported by the health care and other systems in their new homeland. While they always have a medical interpreter for their various doctor’s appointments, the interpretation takes extra time and eats into their opportunities to ask all of their questions and discuss the many concerns they have about Rosa.
Silvia and Juan wished they knew how to explain their needs to the doctor, but the appointments consist of going over the latest test results, current medications and treatments, and the doctor telling them what to do next to care for Rosa. Like 68% of children with special health care needs whose families are Hispanic and speak primarily Spanish, Rosa’s parents do not feel that they receive family-centered care. Moreover, Silvia and Juan do not feel that they are partners in decisions about Rosa’s care—they do what the doctors tell them to do. Sometimes following these directions is difficult, because it makes it hard for Juan to work enough hours and it means finding someone to give them a ride to a new doctor or professional that is not on a bus line where they live.
Like 66.1% of parents of Hispanic children with special health care needs whose families are primarily Spanish-speaking, Rosa’s parents do not report that they are partners in the decision-making process and satisfied with the services they receive. See Percent of CSHCN Whose Families Report that they are not Partners in Decision-making and Satisfied with Services
At one point, Rosa’s child care setting sent her home because she did not have all the immunizations they required. The specialists who treat Rosa’s spina bifida had not talked to Silvia and Juan about the shots. Rosa did not have a medical home—a place where she would receive ongoing primary care that helped her family coordinate her services and provided continuity and support to them.
The family sometimes went to a local clinic for care when they were sick. Where Silvia and Juan grew up, there was no care setting like a medical home and they did not know that it was possible to have care provided in this manner.
Rosa is like 72.8% of children with special health care needs from primarily Spanish speaking Hispanic families whose families report that their child does not have a medical home, compared with 45.9% of Hispanic children from primarily English speaking families and 39.2% of non-Hispanic children. See Percent of CSHCN Who Do Not have a Medical Home graph below.
The following questions can be used to discuss the issues raised in this Data Vignette:
