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Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Individualizing hospital care for children and young people with learning disabilities: it's the little things that
Kate Oulton1, Debbie Sell1, Sam Kerry1
1Centre for Outcomes and Experience Research in Children's Health, Illness and Disability (ORCHID). Great Ormond Street Hospital NHS Foundation Trust, Greater London, England.
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.
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