This qualitative study seeks to understand the perceptions of and expectations for care coordination among low-income Latina mothers of young children who have or are at risk for developmental disability, which has not been previously explored.
Approximately one in five children in the United States is a child with special health care needs, and nearly one in four households with children includes at least one such child. Children with special health care needs (CSHCN) are those who have or are at risk for chronic physical, developmental, behavioral or emotional conditions that require higher than normal health and related services. Developmental disabilities include impairments in physical, learning, language, or behavior areas, diagnosed before age eighteen and generally meet the definition of “special health care needs.”
Children with developmental disabilities who are identified early and begin receiving appropriate and coordinated intervention services demonstrate gains and advantages not shown by their peers who do not participate in these programs. For many children with developmental disabilities however, the array of primary, specialty and other support services needed are poorly coordinated. In addition, families have difficulty navigating the funding and eligibility processes for these programs. Significantly, many parents, especially those parents of low-income children or children of color, report unmet care coordination needs for their children. In fact, for Latino families, care coordination is impeded by lack of access to primary care, low economic status, language and cultural barriers, distrust of and decreased levels of comfort with providers, and low levels of health literacy.
U.S. health reform efforts emphasize care coordination as a key strategy for improving the quality and cost effectiveness of health care. Moreover, these services have the potential to increase patient/parent satisfaction with and engagement in care, support the continuity of care, and improve health outcomes, especially in vulnerable populations. Care coordination is particularly important for children with special or chronic health care needs because, by their very nature, these conditions require on-going attention and management of medical, psychological, social, and economic factors, and the effectiveness of this care can be measured by the experiences of families that receive these services.
High quality care coordination has the potential to reduce health disparities among Latino children with developmental disabilities, yet many Latino parents of CSHCNs, many of whom are low income, report poor coordination of care and services, which leads to significant family dissatisfaction and delays in service resulting in less than optimal health outcomes. Little evidence elucidates the Latino parent experience with the processes of care coordination, and what they expect from care coordination. Additional qualitative inquiry is needed to inform our understanding of Latino parent beliefs regarding care coordination in order to better meet needs and expectations and improve parent engagement and overall child health outcomes.
This investigation uses grounded theory methods to explicate the process of and context of maternal perceptions and expectations of the purpose and practice of care coordination within the context of her child’s developmental disability. Low-income Latina mothers of young children, aged 0 to 3 years who have been identified as being at risk for or have a developmental delay, will be recruited from the High Risk Infant Center at a regional Children’s Hospital. Data will be obtained using individual interviews guided by a semi-structured interview guide. Investigators will also administer a brief descriptive demographic survey. Prior to use, the interview guide and socio-demographic survey will be reviewed with a focus group of Latina mothers who meet study inclusion criteria to ensure culturally sensitive questions and interview techniques. Investigators will obtain informed consent, collect demographic data, and conduct a private, individual digitally recorded interview of each participant. Data will be analyzed using constant comparative analysis. When complete, data, categories, interpretations and conclusions will be confirmed with a randomly selected subset of participants to ensure truthful representation of participants’ experiences.
By exploring maternal understanding of the purpose and practice of care coordination for young children at risk for developmental disabilities, processes associated with maternal caregivers’ information-seeking behaviors, use of care coordinators, participation in treatment decision-making, and health system navigation will be explicated. As a result, a richer, more accurate understanding of Latina mothers’ perceptions of care coordination will lead to more exacting research, and subsequent design of more effective nursing practice and care coordination strategies for use with this population to improve engagement and satisfaction with care, and child health outcomes, particularly for vulnerable CSHCN.
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