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

TY - JOUR

T1 - Barriers and facilitators influencing referral and access to palliative care for children and young people with life-limiting and life-threatening conditions

T2 - a scoping review of the evidence

AU - Holder, Pru

AU - Coombes, Lucy

AU - Chudleigh, Jane

AU - Harding, Richard

AU - Fraser, Lorna K

N1 - Publisher Copyright: © The Author(s) 2024.

PY - 2024/9/9

Y1 - 2024/9/9

N2 - 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 (n = 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.

AB - 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 (n = 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.

UR - http://www.scopus.com/inward/record.url?scp=85203510581&partnerID=8YFLogxK

U2 - 10.1177/02692163241271010

DO - 10.1177/02692163241271010

M3 - Review article

C2 - 39248205

SN - 0269-2163

SP - 2692163241271010

JO - Palliative Medicine

JF - Palliative Medicine

ER -