Latina Mothers' Perception of Care Coordination for Children with Developmental Delay

Purpose:  The purpose of this qualitative study is to improve understanding of 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. 

Background:  The Patient Protection and Affordable Care Act (ACA) emphasizes care coordination as a key strategy for improving the quality and cost effectiveness of health care.  Care coordination has the potential to increase satisfaction with and engagement in care, support the continuity of care, and improve health outcomes. These benefits are particularly important for children with special health care needs (CSHCN), especially those children who have developmental disabilities.  Latino families however, find it extremely difficult to navigate the funding and eligibility processes for the array of primary, specialty and other support services needed for their CSHCN.  Consequently, these families frequently report unmet care coordination needs.  Importantly, very little is known about how these parents, specifically Latina mothers, define care coordination, how they experience the processes of care coordination, and what they expect from care coordination. 

Methods:  Participants include English-speaking Latina mothers of children aged 0 to 36 months who have been identified to have or be at risk for developmental delay, and who will be recruited from an Early Developmental Assessment Center and a High Risk Infant Clinic at two regional Children’s Hospitals.  Adhering to constructivist grounded theory methods, data will be obtained using individual semi-structured interviews.  The semi-structured interview guide will be evaluated prior to use by a focus group of Latina mothers who meet study inclusion criteria to ensure culturally sensitive questions and interview techniques.  A brief descriptive demographic survey will also be administered.

Results:  Data will be analyzed using constant comparative analysis in accordance with constructivist grounded theory methods.  When complete, data, categories, interpretations and conclusions will be confirmed with a subset of participants to ensure truthful representation of participants’ experiences.

Implications:  Maternal expectations of care coordination, as well as psychosocial, cognitive, cultural and language characteristics which facilitate or impede care coordination for this vulnerable population will be identified and explored.  An improved understanding of Latina mothers’ perceptions of care coordination for young children at risk for or who have developmental disability can support the design of more effective instructional, communication and coordination strategies for use with this population to improve engagement in and satisfaction with care, and support child health outcomes.

Funding:  Sigma Theta Tau International Small Grants / Rosemary Berkel Crisp Research Award