Clinical Research Directory

Parents and carers: Inclusion Criteria: * Care for a child (\<5 years) with a complex neurodisability\* * Have received a diagnosis for their child, which has been disclosed to them, even this is a diagnosis such as SWAN (Syndrome Without A Name) * Reside in the boroughs of Newham or Tower Hamlets, East London * ≥18 years of age. Exclusion Criteria: * Have a child with a developmental disability where there are no functional physical impairments as part of their complex needs. For example, children diagnosed with Autism Spectrum Disorder, Attention Deficit Hyperactivity Disorder, intellectual impairments will be excluded unless they have a functional physical impairment with a neurological cause too. * Have a child with a progressive neurological condition such as Duchenne's Muscular Dystrophy. * Have a child with a structural physical impairment not caused by a neurological event or neurological difficulties. For example, children born with a limb difference or a child with hearing loss. * Do not have capacity to consent * Do not meet the inclusion criteria as specified above * There are no exclusions based on language, as interpreting/translating services will be offered. Parent Facilitator: Inclusion Criteria: * Parents/carer of children with complex neurodisability who are identified through other services as potentially being able to facilitate a group as an 'expert parent' * Prior experience in training or using participatory approaches - not essential Exclusion Criteria: * Inability to read and speak English * Inability to commit to a 6-month period of work to the best of their knowledge Healthcare Professional Facilitator: Inclusion Criteria: * Therapists or healthcare professionals who work with children with disabilities and who are open to learning with families about their children. * Need to be registered with the Health and Care Professionals Council and should ideally have \> 5 years post-graduate experience working with a paediatric population * Confident in working with children with complex neurodisability, such as cerebral palsy Exclusion Criteria: * Inability to read and speak English * Inability to commit to a 6-month period of work to the best of their knowledge Key Stakeholders: Inclusion Criteria: * Staff from the NHS that are either involved in the delivery or commissioning of community child health care services in Newham or Tower Hamlets. * Examples include clinical managers, service leads or commissioners. Exclusion Criteria: None