Experiences of Low-Income Black and Latino Parents of Children With Special Health Care Needs: A Mixed-Methods Study

PURPOSE: To understand the experiences of low-income parents of children with special health care needs (CSHSNs), specifically African-American and Latino parents, as they manage their children’s health care needs and to explore parents’ access to and use of information technology to manage their children’s health care needs

BACKGROUND: Currently, CSHCNs represent 20% or approximately 15 million U.S children. Research has consistently shown that African-American and Latino CSHCNs experience disparities in health care access, utilization, and quality compared with White children, even after controlling for socioeconomic status and insurance coverage. Racial and ethnic minority children from low-income families are further disadvantaged and least likely to receive needed services. Parents of low-income racial/ethnic minority children are also more likely to report lack of support and high levels of stress associated with caregiving.

CSHCNs require comprehensive, coordinated care for optimal health outcomes. Responsibility for coordinating care falls largely on parent caregivers. Low-income African-American and Latino parents are especially disadvantaged because of educational and language barriers. To develop effective supports for these parents, it is important to first understand their experiences.

DESIGN: A mixed-methods study involving qualitative focus groups and quantitative

PARTICIPANTS: Thirty-three parents of Medicaid-eligible CSHCNs (as defined by the U.S. Maternal and Child Health Bureau) were recruited from multiple community sites in the Chicagoland area. Parents (29 mothers and 4 fathers) were mostly between 35 and 54 yr old (>75%); 27% identified as African-American, 58% as Latino, and 15% as White.

METHOD: Parents participated in 1.5- to 2-hr focus group discussion focusing on day-to-day management of their children’s health care needs. Focus groups were conducted in English or Spanish. Parents also completed demographic questionnaires and a brief survey on ownership, access, and utilization of information technology.

ANALYSIS: Survey data were analyzed in SPSS and summarized using descriptive statistics such as means and standard deviations for continuous variables and proportions for categorical variables. Focus group data were audio recorded and transcribed verbatim. Transcripts were analyzed using Atlas.ti qualitative software. Thematic analysis was conducted by multiple independent reviewers using grounded theory analytic strategies proceeding from descriptive to conceptual coding.

RESULTS: Qualitative data yielded common themes related to parents’ daily struggles with the maze of health care services, lack of a one-stop shop for information and resources, the need for parent education and advocacy, and the promise of parent-to-parent information exchange. The vast majority of parents reported regular access to information technology. All but one parent (97%) owned a cellular phone; of these, 70% owned a smartphone. Text messaging was the most commonly used cellphone-based application (84%) after making and receiving calls. Of the parents, 89% accessed the Internet regularly, and >50% accessed the Internet on their cellphone. All parents were open to using technology-based sources of information and support.

DISCUSSION: Study findings underscore parents’ need for information and support. Information technology, especially smartphones and text-messaging applications, offer a promising platform for responding to parents’ needs.

IMPACT: The number of CSHCNs in the United States is steadily increasing. Low-income minority families of CSHCNs are at high risk of service disparities. To serve these families better, and in line with principles of family-directed care, occupational therapists need to understand their daily challenges and preferred avenues for providing support.