A call for increased paediatric palliative care research: Identifying barriers

Abstract

The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance emphasises the need to include children and young people (CYP), both those with good health and those with life-limiting conditions (LLCs) or life-threatening illnesses (LTIs) in decisions about health and health research, it is commonly accepted that this is not easily achieved in practice. Challenges faced by researchers aiming to recruit CYP with LLCs or LTIs and their families are numerous, including small sample sizes and limited funding as well as difficulties with research ethics committees, the unpredictable nature of the illnesses and society’s perceptions of the potential physical and psychological burden for participants and their families.