Abstract
The objectives of our study are to: (1) identify the factors associated with lack of stable home healthcare nursing services for children with medical complexity, and (2) describe the implications of unstable home healthcare nursing for children, caregivers, nurses, and home healthcare agencies. We collected qualitative data in 20 semistructured in-depth interviews (15 English, 5 Spanish) with 26 primary caregivers of children with medical complexity, and 4 focus groups of 18 home healthcare nurses inquiring about their experiences about home healthcare nursing services for children with medical complexity. During an iterative analysis process, we identified recurrent themes related to stability of home healthcare nursing. Lack of stability in home healthcare nursing was common. These include: (1) not finding nurses to cover shifts, (2) nurse turnover, (3) nurses calling out frequently, and (4) nurses being fired by caregivers. Reasons for lack of stability of home healthcare nursing services were multifactorial and included: nurse-level, child-level, caregiver-level, residence-level, agency-level, and system-level factors. Lack of stable home healthcare nursing affected the well-being of children with medical complexity, and contributed to substantial caregiver burden. There were negative implications of unstable home healthcare services for nurses and home healthcare agencies as well. Lack of stable home healthcare nursing services is a major problem in the home care of children with medical complexity. Although some of the factors for unstable home healthcare nursing services are not modifiable, there are others that are potentially modifiable. Ensuring stable home healthcare nursing services will likely improve care of children and reduce caregiver burden.