Pediatric palliative care at home by Home Care Unit: how home nurses feel?

Abstract

PURPOSE: Our Home Care Unit (HCU) undertakes close to twenty pediatric palliative care engagements per year. We investigated the factors underlying such care by independent home health nurses. METHODS: This was a retrospective, observational, single-center study. Home nurses who had provided palliative pediatric care in the past 16 months were included. RESULTS: Fifty-six questionnaires were sent out (response rate of 44.6%). Eight home nurses had never provided pediatric palliative care. Three-quarters of the home nurses (76%) acknowledged having misgivings accepting these duties. The factors that facilitated providing this care were the availability of the HCU doctor and nurses, the proactiveness of the HCU team, and house calls. In 76% of cases, the involvement of the home nurses exceeded the strictly professional setting. Forty-six percent of the home nurses were amenable to undertaking another pediatric palliative care engagement, although 48% deemed the remuneration to be somewhat lacking. CONCLUSION: The analysis allowed us to identify several prerequisites for these care engagements: the availability and the proactiveness of the HCU team, communication, and planning. This study showed the pronounced personal involvement of home nurses in complex situations, with both the child and their entire family. Home nurses appear to be skilled at using the resources available to manage the exhaustion that can arise with such an engagement. Facilitating and respecting the choice to stay home of the child and their family was meaningful to them. The personal and professional enrichment were a source of motivation despite certain limitations (availability, remuneration).