title: Barriers to hospice for children as perceived by hospice organizations in North Carolina.
abstract: Despite improving organization of hospice for children with life-limiting illnesses, services may be underutilized. We asked representatives of all 76 existing North Carolina hospice organizations about barriers to serving children. Representatives of 61 agencies responded (80%). Hospices serving children differed from hospices not serving children on perception of barriers: 1) Lack of pediatric trained staff (8% vs 42%, p = 0.01); 2) lack of pediatrician consultation (23% vs 50%, p = 0.03); 3) lack of pediatric pharmacy (4% vs 32%, p = 0.006), and inconsistent plan of care between pediatrician and hospice (12% vs 47%, p = 0.01). Lack of pediatric referrals (78%) and families wanting to continue curative therapies while receiving hospice care (77%) were felt to be the most important barriers overall. Enhanced training of pediatric providers and a model of care which blends disease-specific treatment with hospice may improve access to hospice services for children.
authors.affiliation: Division of Pediatric Hematology and Oncology, University of North Carolina at Chapel Hill, 27599, USA. asanchez@unch.unc.edu
authors.forename: Ana Milena Sanchez
authors.initials: AM
authors.lastname: Varela
authors.forename: Allison M
authors.initials: AM
authors.lastname: Deal
authors.forename: Laura C
authors.initials: LC
authors.lastname: Hanson
authors.forename: Julie
authors.initials: J
authors.lastname: Blatt
authors.forename: Stuart
authors.initials: S
authors.lastname: Gold
authors.forename: Elisabeth P
authors.initials: EP
authors.lastname: Dellon
mesh_terms: D001291:Attitude of Health Personnel; D002648:Child; D002662:Child Health Services / Q000458:organization & administration*; D002675:Child, Preschool; D003625:Data Collection; D005190:Family / Q000523:psychology*; D017051:Hospice Care / Q000706:statistics & numerical data*; D006738:Hospices; D006801:Humans; D009657:North Carolina; D010372:Pediatrics; D010818:Practice Patterns, Physicians'; D012017:Referral and Consultation / Q000706:statistics & numerical data*; D000078329:Workforce