We found that urban caregivers of children with asthma obtain health information primarily from health care professionals, such as physicians and nurses, and report high levels of trust in their health care providers. In addition to obtaining information from health care professionals, many caregivers sought information from other resources. Approximately half of the caregivers sought health-related information from books, magazines or newspapers, and many acquired health-related information from family and friends in the past year. Additionally, about one third of caregivers had obtained health information from the Internet and non-print media sources, such as the television and radio. Caregivers with Adequate HL were more likely to obtain information from family or friends, the Internet, and written sources compared to caregivers with Limited HL.
Our results vary somewhat from prior reports investigating where adults seek health information. For example, one study found that adults living in the United States obtained health information from television (56%) and written sources, such as newspapers and magazines (69%), at higher rates compared to our study (34%, 51% respectively).23
Other studies report that the proportion of adults who browse for health information online varies from 32% to 80%.20, 23, 24
When caregivers of children attending an epilepsy clinic were surveyed, rates of accessing epilepsy-related information from health care professionals, family/friends, non-print media, and written sources were similar to what was found in our study, yet twice as many caregivers accessed health information from the Internet.7
Our findings may differ from previous reports due to the characteristics of the urban population sampled, the recall period, and the year in which the data were collected.
Less than half of caregivers in our sample had access to the Internet in their homes, compared to 70% found in the PEW Internet and American Life Project,20, 25, 26
The lower percentage of in-home Internet access seen in our study is likely due to the lower socioeconomic status of our participants. However three-quarters of caregivers in our sample reported using the Internet in the past year, which is higher than the 63% of adults who reported ever using the Internet in larger and nationally representative samples.26, 27
While our population is predominately low-income, they also represent a younger group of adults (mean age 34.1 years) who may be more likely to go online.28
In addition, 96% of the caregivers included in our study are female, and women are more likely to search for health information online compared to men.25
We found that 37% of the caregivers in our study had Limited HL, or less than a 9th
grade literacy level. The rate of Limited HL found in our study is similar to the 2003 National Assessment of Adult Literacy (NAAL) assessment of health literacy which reported that 36% of adults over the age of 16 have basic or below basic health literacy.29
Similar to other reports, we also found that race, ethnicity, and education are associated with health literacy.14, 29
Although a prior study found that limited parent HL was associated with more severe asthma symptoms,15
severity level at the time of the baseline survey was not associated with caregiver’s HL in this study. However, eligibility for this study required children to have persistent asthma symptoms in the prior year, and thus the limited range of severity may have prevented us from detecting an association between symptoms and caregiver’s health literacy.
Our study suggests that urban caregivers seek information regarding asthma care from multiple sources. Sorting through a variety of information sources and making informed health care decisions may be a daunting task for some caregivers, and particularly for those with limited literacy.30
As an often sought-out and trusted resource among caregivers in our study, health care professionals should be mindful of potentially limited HL among their patients and patients’ caregivers. There is evidence that low literacy levels are associated with poor communication between providers and patients.31
Furthermore, providers may be unaware of limited health literacy of caregivers, which may hinder communicating effective treatment plans for their pediatric patients.32
Prior research has found that tailored education for asthma self-management may help to reduce health literacy disparities,33
and therefore health care providers should guide patients and caregivers towards quality resources and make certain that they understand recommended therapies.
This study is unique in that it explores sources of health information for a community-based sample of urban caregivers of children with persistent asthma. To our knowledge there are no other studies that have described caregivers’ use of health care information sources while taking into consideration the caregiver’s health literacy. Our results also describe urban caregivers’ use of the Internet in general, a statistic that is not readily known.
There are some potential limitations to this study. First, we used a brief survey administered during the baseline visit of a large intervention. Due to limited time during the baseline assessment, and for simplicity, we were not able to provide a comprehensive list of sources of health information, but rather combined some sources together into categories. Therefore, we may not have a complete view of where urban caregivers obtain health information. In addition, we were unable to obtain additional detail regarding the frequency in which caregivers obtain health information or the reasons why caregivers choose to obtain health information from specific sources. We measured HL using the REALM which, though well-established and commonly used, measures pronunciation without assessing understanding of the words used in the scale. Lastly, this is a cross sectional study of urban families participating in an asthma intervention in Rochester, New York, and these findings can only be generalized to a similar population.
In conclusion, we found that urban parents of children with asthma seek health information primarily from their health care providers, but also obtain health information from several additional sources. Health literacy may influence where urban caregivers obtain health information and their use of the Internet. As the most sought after and trusted health resource, health care providers should guide families to appropriate sources for health information and spend time making sure families understand the health information they receive, regardless of source.