title: Improving participation outcomes and interventions in neurodisability: co-designing future research.
abstract: There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritized these for improvement: self-care, friends and social, and physical activity ranked the highest; (3) identified 11 potential intervention categories for targeting the top priority, self-care, through eight hypothesized change mechanisms and agreed for the interventions to be delivered as a 'Menu of Interventions' for personalized self-care support; and (4) designed a before-and-after mixed methods feasibility study to evaluate the Menu with children and young people (0-12 years) and their parents and therapists.
authors.affiliation: Institite of Health and Society, Newcastle University, Newcastle upon Tyne, UK.|Leeds Community Healthcare NHS Trust, Leeds, UK.
authors.forename: J
authors.initials: J
authors.lastname: McAnuff
authors.affiliation: Leeds Beckett University, Leeds, UK.
authors.forename: R
authors.initials: R
authors.lastname: Brooks
authors.affiliation: Leeds Community Healthcare NHS Trust, Leeds, UK.
authors.forename: C
authors.initials: C
authors.lastname: Duff
authors.affiliation: Northumberland, Tyne and Wear NHS Foundation Trust, Newcastle upon Tyne, UK.
authors.forename: M
authors.initials: M
authors.lastname: Quinn
authors.affiliation: Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
authors.forename: J
authors.initials: J
authors.lastname: Marshall
authors.affiliation: Institite of Health and Society, Newcastle University, Newcastle upon Tyne, UK.|Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
authors.forename: N
authors.initials: N
authors.lastname: Kolehmainen
mesh_terms: D002648:Child; D002675:Child, Preschool; D006233:Persons with Disabilities / Q000534:rehabilitation*; D015444:Exercise; D005240:Feasibility Studies; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007398:Interpersonal Relations; D008019:Life Style; D065886:Neurodevelopmental Disorders / Q000503:physiopathology / Q000534:rehabilitation*; D017063:Outcome Assessment, Health Care / Q000379:methods; D010358:Patient Participation; D012107:Research Design; D012648:Self Care
keywords: participation; patient and public involvement; self-care; user involvement