Do specialist paediatric palliative care services benefit children and young people patients with life-limiting or life-threatening conditions and their families?

Abstract

Background Children and young people (CYP) with life-limiting (LLC) and life-threatening (LTC) conditions represent a growing and significant patient population. The effective delivery of integrated, holistic palliative healthcare for patients with life-limiting conditions with a focus on the delivery of this care in the community presents a significant future challenge in healthcare. Specialist paediatric palliative care services (SPPC) are those provided by professionals who have received specialist training in the area. Currently the availability and provision of SPPC services is variable internationally. Aims The aims of this review are to: * Identify systematically the current research specifically concerning SPPC specifically defined as teams supported by a specialist physician in paediatric palliative medicine. * Critically review the quality and findings of current research, particularly regarding potential benefits to CYP and their families who receive SPPC. * Make recommendations for future research. Methods A systematic review of studies of SPPC services published in English from 1980-2015. The databases Cochrane, MEDLINE, PubMed, EMBASE, CINAHL, and AMED were searched. SPPC services were defined as those provided by professionals who have received specialist level training, including a paediatric palliative medicine consultant. Results Six studies were identified. The study findings suggest that SPPC services can impact beneficially on the care of CYP and their families particularly in five key areas. The provision of SPPC can result in a reduction in the rate of planned hospital admissions; more CYP dying at home; improved quality of life including a higher chance that the CYP has an experience that adds meaning to their life; symptom control; and parents feeling supported by services psychologically and in activities of daily living. Conclusion There is an emerging evidence base to show that the provision of SPPC services can contribute beneficially to the care and experiences of CYP with LTCs and LLCs. This is a clinically and ethically challenging area to study. We identified several studies currently in progress. Further research into the mechanisms by which the benefits to CYP and their families are achieved through the delivery of SPPC, as well as more in-depth research into specific elements of service provision is recommended.