Challenges of paediatric palliative care in Romania: a focus groups study

Nadia Pacurari,Bernice S. Elger,Eva De Clercq,Anca Colita,Monica Dragomir,Tenzin Wangmo

doi:10.1186/s12904-021-00871-7

Nadia Pacurari, Bernice S. Elger + Show 4 more

Open Access

https://doi.org/10.1186/s12904-021-00871-7

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Abstract

BackgroundThe availability of palliative care facilities for children vary considerably among the European member states. In Romania, a country where health expenditure is among the lowest in Europe, palliative care has been mainly provided by charitable organizations. Despite the high number of children needing palliative care, there is scant literature and research available on paediatric palliative care in Romania. The study explores the viewpoints of various paediatric oncology providers with regard to paediatric palliative care provision in Romania.MethodsFour mixed focus groups were conducted at four university-affiliated paediatric oncology centres located in three distinct Romanian regions (Bucuresti-llfov, Nord-Est and Nord-Vest). The focus groups were analyzed using thematic coding.ResultsFor many healthcare professionals, emotional burden inherent to the profession; unhealthy work-life balance and understaffing were among the biggest barriers to the successful integration of pediatric palliative care. The lack of staff was attributed to a shortage of financial resources, and to the persisting cultural stigma surrounding palliative care and oncology. Also political turmoil was identified as an important obstacle to palliative care implementation.ConclusionSignificant barriers persist limiting the broader implementation of pediatric palliative care in Romania. In order to render palliative care in pediatric oncology more sustainable, more attention should be paid to the mental health care of healthcare professionals working in this field, to the development of mobile palliative care services and to the emigration of skilled medical staff.

Highlights

The availability of palliative care facilities for children vary considerably among the European member states
For Romania, the first part of the project consisted of semi-structured interviews with parents and physicians on shared decision making in paediatric oncology [17,18,19]
The present study used focus groups (FG) to capture the perspective of different healthcare professionals (HCPs) from four universityaffiliated paediatric oncology centres located in three distinct regions (Bucuresti-llfov, Nord-Est and Nord-Vest) of the country and included patient representatives

Summary

Introduction

The availability of palliative care facilities for children vary considerably among the European member states. According to a recent report of the Council of Europe [3], PC is an essential part of the human right to health and should be integrated in each member state’s healthcare system. This means that EU countries should guarantee adequate training on PC for all healthcare professionals (HCPs) and offer respite services for informal caregivers. This is important in the case of paediatric palliative care (PPC) since most children are cared for at home by their parents. Compared to PC services for adults, facilities for children are not yet widely available and the availability of services, professionals and professional activity vary considerably among the EU member states, with high-income countries being better provided compared to low-to-middle income countries [5]

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Conclusion