BackgroundThe Internet has revolutionized the way in which many Americans search for health care information. Unfortunately, being able to use the Internet for this purpose is predicated on having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of children with special health care needs who are forced to make many medical decisions throughout the lives of their children. Yet, no information is available about this vulnerable group.ObjectiveFor parents of children with special health care needs we sought to (1) describe their Internet access and use, (2) determine which child and household factors were associated with Internet use, (3) describe eHealth literacy of Internet users, and (4) determine which child and household factors were associated with greater eHealth literacy.MethodsThis was a cross-sectional telephone survey of 2371 parents whose children with special health care needs were enrolled in Florida’s Medicaid and State Children’s Health Insurance Plan (SCHIP) programs (4072 parents were approached). To be enrolled in the program, families must have incomes that are less than or equal to 200% of the federal poverty level. The eHealth Literacy Scale (eHEALS) was used to measure eHealth literacy. Descriptive and multivariate analyses were conducted to address the study objectives.ResultsThe survey response rate was 58.2%. Participating parents were mainly female (2154/2371, 91%), white non-Hispanic (915/2371, 39%), English speaking (1827/2371, 77%), high school graduates (721/2371, 30%), married (1252/2371, 53%), and living in a two-parent household (1212/2371, 51%). Additionally, 82% of parents (1945/2371) in the sample reported that they used the Internet, and 49% of those parents used it daily (1158/2371). Almost three-quarters of Internet users had access to the Internet at home while about one-half had access at work. Parents who were African American, non-English speaking, older, and not college graduates were less likely to use the Internet than their referent groups (P < .001). About 74% of Internet users (1448/1945) reported that they knew how to find health information for their children. However, only about one-half (1030/1945) reported that they can tell high quality from low quality resources online or that they feel confident in using information accessed online to make health decisions. Multivariate regression results consistently showed that being a non-English speaker, having less than a high school education, and being older were all significantly associated with lower eHealth literacy (all P < .001).ConclusionLow-income parents of children with special health care needs have access to and use the Internet as a source of information about their children's health. However, some parents are unable to distinguish between high and low quality information and are not confident in using the Internet. This information is timely because as the pressure to use the Internet to empower consumers and exchange inf...

Despite recommendations to refer children to palliative care early in the course of illness, most pediatricians define palliative care as similar to hospice care and refer patients once curative therapy is no longer an option. Creating a more-practical definition of care, one that emphasizes an array of services throughout the course of an illness, as opposed to hospice care, may increase earlier palliative care referrals for children with life-limiting illnesses.

Parents of children with life-threatening illnesses have access to and use the Internet as a source of information about their children's health. More information is needed to explore how electronic-based interventions could be used to impact information seeking of parents whose children are in pediatric palliative care programs.

Our findings stress the importance of considering the needs of all family members when providing care to children and understanding and attempting to address family member's needs that may not be covered by pediatric palliative care services. Particular attention should be paid to parents with depressive symptoms, because they can receive supportive care in their children's pediatric palliative care programs.

Florida's program is the first in the nation to provide government-subsidized pediatric palliative care from the point of diagnosis onwards. Lessons learned from Florida's experiences will help guide other states and health plans that desire to implement a similar model of care.

Descriptive analyses suggest that there are differences between pediatric hospice and nonhospice users. Minority race/ethnicities, as well as shortened Medicaid enrollment spans, are both associated with decreased hospice expenditures. Information from this study can be used to develop interventions aimed at increasing the prevalence of and reducing inequalities in hospice care.

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Annually, about 500,000 children are coping with life-limiting illnesses in the USA. Integrated pediatric palliative care program could benefit some of these children by improving their health-related quality of life (HRQOL). To measure the effect of pediatric palliative care programs on HRQOL, a valid and reliable tool must be identified. This study aimed to validate the psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life 4.0, for children with life-limiting illnesses. Analyses were conducted using telephone survey data collected from 266 parents whose Medicaid-enrolled children had life-limiting illnesses. Results of the analyses suggest the Pediatric Quality of Life 4.0 does not have valid psychometric properties for measuring HRQOL within this population. Our study documents several challenges in using the generic instrument to measure HRQOL in pediatric palliative care setting. We point out future directions to refine or develop HRQOL instruments for this population of vulnerable children.