16 Caring for children with medical complexity beyond the hospital: The work life experiences of nurses in homecare

Abstract

Abstract Background Homecare nursing is considered essential to the care for children with medical complexity (CMC) given their intense daily care demands and dependence on medical technology. While patients, families, and healthcare providers (i.e., paediatricians, nurse practitioners) rely on homecare nurses (HCNs), there is limited research exploring factors that either promote or challenge the ability of HCNs to provide safe and satisfactory care in the home environment. Objectives This study aims to gain a thorough understanding of HCNs’ experiences caring for CMC. Specifically, we aimed to explore both the facilitators and barriers to feeling well-equipped for the role, developing relationships with families, and providing high quality care. Design/Methods We conducted semi-structured interviews between March 2021-March 2023 with HCNs caring for CMC using medical technology (e.g., home ventilation, central venous access devices). Interview questions explored the HCNs’ clinical experiences and education in the use of medical technology, relationships with family caregivers, rewarding and challenging aspects of their work-life, and recommendations to improve their experience in homecare nursing. Interviews were audio recorded, deidentified, transcribed verbatim, coded and analyzed using content analysis. Results Twenty-one semi-structured interviews were conducted. The interviews revealed two major themes and several associated subthemes: (1) the unique experiences of a homecare nurse (patients’ homes as the workplace, obstacles to delivering care, toll on emotions, and rewards of the role); and (2) interactions with patients and their families (facilitators of building partnerships and challenges to relationships). Conclusion Homecare nursing for CMC is rewarding, providing opportunities for HCNs to develop meaningful connections with their patients while also supporting families. However, HCNs experience several challenges including inconsistent training, inadequate resources, and conflicts with families. Understanding the perspectives of HCNs is critical to improving their experience in the role, and in turn, enhancing care for their patients. These findings can inform the development and implementation of supports needed to optimize the work experience for HCNs.