Home Health Nursing Agencies’ Services for Children with Medical Complexity: Parent and Nurse Perspectives

OBJECTIVE:Many children with medical complexity (CMC) require the services of home health nurses (HHNs). Home health agencies (HHAs) hire, train, and manage nurses. For children to flourish, families, nurses, and HHAs must establish successful working relationships. Our objective was to understand the perspectives of parents and nurses about HHAs. METHODS:In Illinois (IL) from 2019-22, HHNs for and parents of children with invasive mechanical ventilation were interviewed. In North Carolina (NC) from 2012-13, parents of CMC were interviewed, and from 2013-14 HHNs participated in focus groups. Each dataset was initially analyzed separately for main themes relating to HHAs. Using collaborative thematic analysis, we determined themes common across datasets. RESULTS:In IL, 23 mothers, 12 fathers, and 20 nurses were interviewed. In NC, 19 mothers, 6 fathers, and 1 grandmother were interviewed; and 4 focus groups of 18 nurses were conducted. Four common themes were identified. (1) HHAs do not have a uniform process for hiring and assigning nurses to cases. (2) HHAs have marked variability in training offered to nurses. (3) Shift scheduling, notifications, and communications with the HHAs frustrate parents and nurses. (4) Nurses and parents have little allegiance to specific HHAs; they frequently change agencies or work with several simultaneously. CONCLUSIONS:Parents and nurses perceive practices for hiring, training, and staffing as inconsistent, and experience communication challenges. HHA-level problems may contribute to issues with home health nurse retention, and complicate the lives of the families of CMC. Further research about this critical healthcare sector is needed. WHAT'S NEW:Home health nursing is a critical resource for many children with medical complexity, yet home health agencies are understudied. Parent and home health nurses describe variability in agencies' hiring, training, and case assignment practices, and communication challenges with agencies.