title: Social circumstances and medical complications in children with intestinal failure.
abstract: Although most children discharged on home parenteral nutrition (HPN) will achieve enteral autonomy, some remain parenteral nutrition dependent; those who develop life-threatening complications may undergo small bowel transplantation (SBTx). The aim of this study was to investigate the relationship between social circumstances, compliance and complications.
  
  
  METHODS
  An observational study in 2008-2012 on 64 children (34 HPN, 30 SBTx) from three units (two regional gastroenterology; one transplant). Social circumstances were assessed routinely as part of discharge planning; adherence by families to home care management was scored, and episodes of catheter-related blood stream infection and graft rejection were recorded for 2 years and related to compliance and social circumstances.
  
  
  RESULTS
  A quarter of families had a disadvantaged parent: non-English speaking (n=11), unable to read (n=5), physical disability (n=3), mental health problems disclosed (n=10); 20% children were cared for by a lone parent. Discharge home was delayed by social factors (n=9) and need for rehousing (n=17, 27%). 17/34 (50%) of HPN and 12/30 (40%) of transplant families were assessed as fully adherent. 10 families were assessed as non-adherent, eight were subject to child protection review and care was taken over by another family member (n=3) or foster parents (n=2). The risk of catheter-related blood stream infection was increased by parental disadvantage and age <3 years (p<0.05). Poor compliance was associated with complications in HPN and SBTx recipients.
  
  
  CONCLUSIONS
  Children receiving complex home care may be socially isolated and measures to support improved compliance such as increased community support, social care involvement and respite care may improve outcomes.
authors.affiliation: Department of Paediatric Gastroenterology, Leeds Children's Hospital, The General Infirmary at Leeds, , Leeds, UK.
authors.forename: Veena
authors.initials: V
authors.lastname: Zamvar
authors.forename: John W L
authors.initials: JW
authors.lastname: Puntis
authors.forename: Girish
authors.initials: G
authors.lastname: Gupte
authors.forename: Gill
authors.initials: G
authors.lastname: Lazonby
authors.forename: Christine
authors.initials: C
authors.lastname: Holden
authors.forename: Elaine
authors.initials: E
authors.lastname: Sexton
authors.forename: Christopher
authors.initials: C
authors.lastname: Bunford
authors.forename: Susan
authors.initials: S
authors.lastname: Protheroe
authors.forename: Susan V
authors.initials: SV
authors.lastname: Beath
mesh_terms: D000293:Adolescent; D055499:Catheter-Related Infections / Q000209:etiology; D002648:Child; D002675:Child, Preschool; D004739:England; D005260:Female; D006084:Graft Rejection / Q000209:etiology; D006801:Humans; D007223:Infant; D007421:Intestine, Small / Q000637:transplantation; D008286:Malabsorption Syndromes / Q000523:psychology / Q000628:therapy*; D008297:Male; D016331:Parenteral Nutrition, Home / Q000009:adverse effects / Q000523:psychology* / Q000592:standards; D010349:Patient Compliance; D012189:Retrospective Studies; D012307:Risk Factors; D020954:Single-Parent Family; D012924:Social Conditions; D012944:Social Support; D035862:Vulnerable Populations / Q000523:psychology
keywords: Comm Child Health; Gastroenterology; Multidisciplinary team-care; compliance; transplantation