Childhood disability
About this PSP
For the purposes of this PSP, Neurodisability describes a group of congenital or acquired long-term conditions that are attributed to impairment of the brain and or neuromuscular system and create functional limitations. A specific diagnosis may or may not be identified. Conditions may vary over time, occur alone or in combination, and include a broad range of severity and complexity. The impact may include disturbances of movement, cognition, hearing and vision, communication, emotion and behaviour.
This PSP was initiated by the British Academy of Childhood Disability (BACD) Strategic Research Group. One of the key aims of the group is to encourage and assist families, young people and clinicians to identify the research priorities for children and young people affected by neurodisability. A small resource was allocated from the BACD's Paul Polani Fund to run the PSP.
The video below shows Doug Simkiss talking about the PSP.
The Childhood Disability PSP Top 10 was published in January 2015.
“I am a mum with 3 children, one with neurodisabilities, and the JLA process was a whole new experience for me. It was empowering to feel that families like mine could influence research priorities for children with neurodisabilities. We worked hard to make the case to parent carers to be involved because our time is precious and we need to know what we do is going to make a difference. The final prioritisation genuinely reflected what families wanted and would make a difference to our children’s lives. ”
Impact of Top 10s
Top 10 priorities
- Does the timing and intensity of therapies (e.g. physical, occupational and speech and language therapy, ‘early intervention’, providing information etc.) alter the effectiveness of therapies for infants and young children with neurodisability, including those without specific diagnosis? What is the appropriate age of onset / strategies / dosage / direction of therapy interventions?
- To improve communication for children and young people with neurodisability: (a) what is the best way to select the most appropriate communication strategies? And (b) how to encourage staff/carers to use these strategies to enable communication?
- Are child-centred strategies to improve children’s (i.e. peers) attitudes towards disability (e.g. buddy or Circle of Friends etc) effective to improve inclusion and participation within educational, social and community settings?
- Does appropriate provision of wheelchairs to enable independent mobility for very young children improve their self-efficacy?
- Are counselling/psychological strategies (e.g. talking therapies) effective to promote the mental health of children and young people with neurodisability?
- What is the (long term) comparative safety and effectiveness of medical and surgical spasticity management techniques (Botulinum neurotoxin A (BoNT-A), Selective Dorsal Rhizotomy (SDR), Intrathecal Baclofen (ITB), orally administered medicines) in children and young people with neurodisability?
- Does a structured training programme, medicines and/or surgery speed up the achievement of continence (either/or faecal or urinary) for children and young people with neurodisability?
- What strategies are effective to improve engagement in physical activity (to improve fitness, reduce obesity etc.) for children and young people with neurodisability?
- Which school characteristics (e.g. policies, attitudes of staff etc.) are most effective to promote inclusion of children and young people with neurodisability in education and after-school clubs?
- What is the long term safety, effectiveness and sustainability of behavioural strategies and/or drugs (e.g. melatonin) to manage sleep disturbance in children and young people with neurodisability (outcomes include time to onset, duration, and reducing impact on family)?
The following questions were also discussed and put in order of priority at the workshop:
- What is the safety and effectiveness of drugs compared to talking therapies (e.g. Cognitive Behavioural Therapy) to treat anxiety in children and young people with Autistic Spectrum Disorders?
- Are any types of physical therapy (e.g. Bobath, Neuro-Developmental Therapy, conductive education, hydro, constraint, strength-training etc) more or less effective to promote motor functioning in children and young people with neurodisability (e.g. cerebral palsy, acquired brain injury)?
- Are sensory processing/integration therapeutic programmes effective in improving behaviour and/or increasing play/participation for children and young people with neurodisability?
- Are behavioural and sensory interventions (e.g. early intensive behavioural intervention, EarlyBird, encouraging socialisation with peers etc.) effective in managing symptoms of Autistic Spectrum Disorder?
- Are postural management programmes (using standing frames and sleep systems etc) effective and cost effective to prevent deformity (hip and/or spine) and improve function in children and young people with neurodisability? What is the incidence of adverse effects e.g. pain, sleep problems etc.?
- Are child-focused strategies (e.g. one-to-one or group social and skills training) effective to improve confidence, self-esteem and promote participation in recreation and leisure activities for children and young people with neurodisability?
- Do cross-sector interventions (e.g. key workers, named contacts to promote integrated health, social care, education) improve school attendance, reduce admissions, and parents’ satisfaction and experience of care for children and young people with neurodisability?
- Does promoting public positive attitudes towards disability improve participation in recreation and leisure activities for children and young people with neurodisability?
- Are dietary modifications/restrictions (e.g. gluten, casein, dairy, meat etc.) effective in managing symptoms of Autistic Spectrum Disorder?
- Are oro-motor treatment strategies (e.g. oral motor exercises, sensory stimulation, sensorimotor activities etc.) effective to improve eating and drinking or speech for children and young people with neurodisability? Are there identifiable subgroups that benefit more from the strategies?
- Are any designs of orthoses (e.g. Lycra, kinesiotaping, plastic etc.) more or less effective to promote functioning and prevent deformity for children and young people with neurodisability?
- Are interventions to improve consistency of approach between health and education agencies (e.g. keyworkers) effective to improve behavioural problems in children with Autistic Spectrum Disorder (ASD)?
- What is the long term safety and effectiveness of drugs used in seizure management, especially in terms of adverse effects on learning, psychosis, anxiety, anger and rage?
- Does using instrumented gait analysis improve decision-making about treatments compared to clinical assessment alone for children and young people with cerebral palsy?
- Do massage-based therapies improve functioning and wellbeing for children and young people with neurodisability?