Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions: a scoping review of the evidence.

BACKGROUND

Palliative care is an essential component of children's health services but is accessed by fewer children than could potentially benefit.

AIM

Appraise the evidence to identify factors influencing referral and access to children's palliative care, and interventions to reduce barriers and improve referrals.

DESIGN

Scoping review following the six stages of the Arksey and O'Malley framework. Data were charted using an adapted version of the socioecological framework.

DATA SOURCES

CINAHL, MEDLINE, PsycINFO, EMBASE, Cochrane Library were searched for primary studies of any design and literature/systematic reviews. Studies reporting barriers/facilitators and interventions in relation to referral of children with a life-limiting condition to palliative care, in any setting, were included.

RESULTS

One hundred ninety five articles (primary qualitative and quantitative studies, reviews) were retained (153 reporting barriers/facilitators; 40 interventions; 2 both). Multiple factors were identified as barriers/facilitators: Individual level: underlying diagnosis, prognostic uncertainty, parental attitudes, staff understanding/beliefs; Interpersonal level: family support, patient-provider relationships, interdisciplinary communication; Organisational level: referral protocols, workforce, leadership; Community level: cultural norms, community resources, geography; Society level: policies and legislation, national education, economic environment, medication availability. Most of these factors were bi-directional in terms of influence. Interventions ( = 42) were mainly at the organisational level for example, educational programmes, screening tools/guidelines, workplace champions and new/enhanced services; one-third of these were evaluated.

CONCLUSION

Barriers/facilitators to paediatric palliative care referral are well described. Interventions are less well described and often unevaluated. Multi-modal approaches incorporating stakeholders from all levels of the socioecological framework are required to improve paediatric palliative care referral and access.