# Types of Challenges and Barriers in Accessing Paediatric Palliative Care in Romania: A Qualitative Study Based on Focus Groups Guided by a Semi-Structured Discussion Guide

## TL;DR

This study explores the challenges and barriers in accessing pediatric palliative care in Romania through focus groups with parents, caregivers, and institutions.

## Contribution

The study provides a qualitative analysis of diverse stakeholder perspectives on barriers and facilitators in accessing pediatric palliative care in Romania.

## Key findings

- Parents reported abandonment in the curative system and emphasized the need for pain control and community support.
- Public institutions acknowledged a lack of skills and inter-sectoral coordination, while NGOs highlighted structural barriers and low visibility.
- Major needs identified include specialized care, psychological support, and financial assistance for families.

## Abstract

Background and Objectives: Paediatric palliative care in Romania is underdeveloped and unevenly distributed, which creates major difficulties in accessing services for children with life-limiting illnesses and their families. The lack of a dedicated national strategy, the shortage of specialised staff, and socio-economic barriers exacerbate the vulnerability of these groups. This study aimed to explore parents’ and caregivers’ experiences, to analyse the perspectives of public institutions and NGOs involved in supporting these children, and to identify the main barriers and facilitators in accessing paediatric palliative care. Materials and Methods: Given that all data were collected exclusively through focus group discussions, this study employed a qualitative design based on three focus groups guided by a semi-structured interview guide. The analysis was conducted using MAXQDA software, which enabled the coding and synthesis of emerging themes. Participants were parents/caregivers of children with life-limiting illnesses, representatives of public institutions, and members of relevant NGOs in Bacău County, Romania. Purposive sampling was used to capture diverse and experience-based perspectives, resulting in a total of 24 participants across three focus groups—parents and caregivers (n = 11), public institution representatives (n = 7), and NGO representatives (n = 6). No individual semi-structured interviews were conducted. Results: The analysis highlighted a complex typology of medical, emotional, social, educational, and spiritual needs of children and their families. Parents reported experiences of abandonment in the curative system, emphasising the importance of pain control, safety, and community support. Public institutions acknowledged the lack of skills and inter-sectoral coordination, while NGOs pointed to structural barriers and the low visibility of these children. Major needs include access to specialised care, psychological support, respite services for carers, financial and administrative assistance, education, and spiritual counselling. A significant obstacle is the lack of up-to-date statistical data needed to inform public policy. Conclusions: Paediatric palliative care should be considered a national priority through the development of a dedicated strategy, the expansion of specialised services, and the strengthening of partnerships between the public and non-governmental sectors. An integrated, child- and family-centred approach addressing the medical, social, emotional, and spiritual dimensions of care is essential. The results highlight the need for continuous staff training, information campaigns, and community support mechanisms to reduce inequalities and improve the quality of life of children with life-limiting illnesses.