Establishing Relationships and Navigating Boundaries When Caring for Children With Medical Complexity at Home

Abstract

Children with medical complexity receive care from many healthcare providers including home healthcare nurses. The objective of our study, based on a conceptual framework, was to describe the relationships between parents/caregivers of children with medical complexity and home healthcare nurses caring for these children. 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 caregiver–nurse relationships. Our study showed that: (1) caregiver–nurse relationships evolved over time and were determined by multiple factors; (2) communication and trust were essential to the establishment of caregiver–nurse relationships; (3) both caregivers and nurses described difficulties of navigating physical, professional, personal, and emotional boundaries, and identified strategies to maintain these boundaries; and (4) good caregiver–nurse relationships helped in the care of children with medical complexity, reduced caregiver burden, resulted in less stress for nurses, and was a factor in nurse retention. We conclude that trusted relationships between caregivers and nurses are important to the home care of children with medical complexity. Interventions to develop and maintain good caregiver–nurse relationships are necessary.