Experiences of Parents Seeking Emergency Care for Injured Children with Special Health Care Needs

Children and youth with special health care needs (CYSHCN)—which include children with chronic conditions such as Asthma, Autism, Depression, Down Syndrome, or Spina Bifida—are at greater risk of developing hospital complications following physical trauma. However, the mechanisms behind this elevated risk are unknown. A major roadblock to uncovering potential mechanisms is a lack of understanding of the family perspective of the care given to the injured child with special health care needs. Therefore, the proposal objective is to identify factors contributing to poor care quality such as hospital complications through a qualitative assessment of the experiences of parents and other family caregivers seeking emergency care for their injured child with special health care needs. This project will engage families representing a range of special health care needs to provide their experiences and perspectives of emergency care of injured CYSHCN, and thus addresses a major roadblock in the field. The central hypothesis is that a lack of timely, integrated, anticipatory, and accommodating care as reported by family caregivers will negatively affect injury outcomes in CYSHCN. This hypothesis will be examined through the following specific aim: Assess family caregiver experiences seeking emergency care for injured CYSHCN. In this aim, a demographic questionnaire will be paired with a semi-structured interview guide to collect qualitative data from family caregivers of CYSHCN. At least 35 family caregivers will be surveyed and interviewed, consisting of a purposive sample representing physical, developmental, and behavioral/emotional special health care needs. In addition to local recruitment, the study team will partner with two organizations that have a national reach to ensure diversity in recruited family caregivers. The data will be analyzed using a rapid analysis approach, where both inductive and deductive modalities will be employed. The proposed research is innovative because it focuses on injury as the reason for CYSHCN accessing emergency care and incorporates the family caregiver voice. The proposed research is significant because successful completion of this project will elucidate the mechanisms behind adverse outcomes in injured CYSHCN, where the family caregiver-identified factors in the R03 will complement the provider-identified factors from the current KL2 project. Together with the KL2, this R03 will inform interventions for R21 and R01 proposals to improve emergency health care delivery for injured CYSHCN. As a result, it will support the PI to transition to a fully independent academic translational scientist.