Exploring pediatric palliative care in Luxembourg: a mixed-methods study.

Abstract

Background: An estimated 170,000 children in the WHO European Region have no access to palliative care annually. In Luxembourg, there is a lack of data on children needing palliative care, and the existing structure appears limited. This study aims to assess the current state of pediatric palliative care in Luxembourg.

Methods: We used a parallel convergent mixed-methods approach, collecting qualitative and quantitative data simultaneously and analyzing them independently. Snowball and purposive sampling methods were employed. The qualitative data, including documents, email correspondence, and open-ended interviews with participants caring for children with life-limiting or life-threatening conditions, followed the COREQ guidelines and were analyzed using thematic analysis. Quantitative data were analyzed using both descriptive and inferential statistical methods.

Results: The analysis highlights a significant gap in the provision of care at all levels of pediatric palliative care in Luxembourg. Approximately 500 to 600 children up to 19 years old require palliative care each year, which exceeds previous estimates. Existing legal frameworks are predominantly designed for adults and end-of-life care, and do not sufficiently address the holistic needs of children requiring palliative care and their families. Homecare services are in the early development phase, and specialized pediatric palliative care options are limited across all levels. A pediatric palliative care course, set to be introduced in 2025 for university pediatric nursing students as outlined in the national plan, aims to address some of these gaps by developing competencies. However, until sufficient specialized care is established, many children are transferred to neighboring countries where there are better resources and expertise or remain at home, receiving limited services.

Conclusion: This study presents, for the first time, data on pediatric palliative care in Luxembourg, with a focus on service availability, the legal framework, and the estimated number of children requiring care. The findings highlight the urgent need for a structured pediatric palliative care service to address this country's growing demand and unmet needs. In addition, it is essential to support the implementation of the "National Plan for End of Life and Palliative Care" from 2023 to 2026, which includes a dedicated focus on children.