title: Individualizing hospital care for children and young people with learning disabilities: it's the little things that make the difference.
abstract: This ethnographic study sought parent, patient and staff views about the needs of children and young people with learning disability and their families during hospitalization. Reported here are data from 27 staff. The need for individualized care was identified, based on gaining appropriate experience and training, identifying the population, focussing on the "little things", creating a safe, familiar environment and accessing and using appropriate resources. Parents played a central role in staff's delivery of individualized care. A lack of staff experience, knowledge and communication about learning disability can mean they rely on parent's input rather than forming a true partnership with them.
authors.affiliation: Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID). Great Ormond Street Hospital NHS Foundation Trust, Greater London, England. Electronic address: Kate.oulton@gosh.nhs.uk.
authors.forename: Kate
authors.initials: K
authors.lastname: Oulton
authors.affiliation: Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID). Great Ormond Street Hospital NHS Foundation Trust, Greater London, England.
authors.forename: Debbie
authors.initials: D
authors.lastname: Sell
authors.affiliation: Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID). Great Ormond Street Hospital NHS Foundation Trust, Greater London, England.
authors.forename: Sam
authors.initials: S
authors.lastname: Kerry
authors.affiliation: Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID). Great Ormond Street Hospital NHS Foundation Trust, Greater London, England; London South Bank University, Greater London, England.
authors.forename: Faith
authors.initials: F
authors.lastname: Gibson
mesh_terms: D000293:Adolescent; D001291:Attitude of Health Personnel; D002648:Child; D005260:Female; D006760:Hospitalization / Q000706:statistics & numerical data*; D006801:Humans; D007859:Learning Disabilities / Q000175:diagnosis / Q000628:therapy*; D008297:Male; D008505:Medical Staff, Hospital / Q000458:organization & administration / Q000523:psychology*; D057285:Precision Medicine / Q000379:methods* / Q000523:psychology; D036301:Qualitative Research; D011788:Quality of Life; D012944:Social Support; D016896:Treatment Outcome; D006113:United Kingdom
keywords: Children and young people; Hospital care; Learning disability; Parent–staff relationship; Qualitative research