ObjectivesTo engage young people, parent carers and clinicians in a systematic process to identify and prioritise research questions regarding ways to improve the health and well-being of children and young people with neurodisability.DesignBritish Academy of Childhood Disability (BACD)-James Lind Alliance research priority setting partnership bringing together patients, carers and clinicians as equal stakeholders.SettingUK health service and community.MethodsThe BACD Strategic Research Group formed the partnership. A Steering Group was established; charity and professional partner organisations were recruited. Suggestions were gathered in an open survey and from research recommendations for statutory guidance. Items were aggregated to formulate indicative research questions and verified as uncertainties from research evidence. An interim survey was used to rank the questions to shortlist topics. A mixed group of stakeholders discussed the top 25 questions at the final priority setting workshop agreeing a final rank order and the top 10 research priorities.ParticipantsPartner organisations were 13 charities and 8 professional societies. 369 people submitted suggestions (40% non-clinicians). 76 people participated in the interim prioritisation (26 parents, 1 young person, 10 charity representatives, 39 clinicians); 22 took part in the final workshop (3 young people, 7 parents, 3 charity representatives, 9 professionals).ResultsThe top three research priorities related to (1) establishing the optimal frequency and intensity (dose) for mainstream therapies, (2) means for selecting and encouraging use of communication strategies and (3) ways to improve children's attitudes towards disability. The top 10 included evaluating interventions to promote mobility, self-efficacy, mental health, continence, physical fitness, educational inclusion and reduce impacts of sleep disturbance.ConclusionsThe methodology provided a systematic and transparent process to identify research priorities that included stakeholders that have typically not contributed to setting the research agenda. The top 10 and other topics identified provide a resource for researchers and agencies that fund research
Detailed data about needs generated outputs useful for local care pathway development and service planning. Sufficient evidence was provided for successful business cases leading to the appointment of additional paediatric disability consultants. Counting numbers of needs and issues quantifies complexity in a straightforward way. This could underpin needs-based commissioning of services.
SummaryChildren and adults with neurodevelopmental disorders make up an estimated 10% of the population. Addressing health inequalities and poorer life outcomes is essential to deliver better quality care. Two parent-carers working in national roles in England suggest ways to increase understanding and work together in coproduction to achieve this.
Purpose
The purpose of this paper is to provide a commentary, from a parent carer perspective, on Murphy’s overview of the NICE guidelines and quality standards on learning disabilities and behaviour that challenges.
Design/methodology/approach
The paper discusses the NICE approach, the content of these specific guidelines and quality standards and considers their practical relevance, with a particular focus on families of children and young people with learning disabilities and behaviour that challenges.
Findings
Gaps in research affect recommendations in some key areas including around transition and early intervention. Risk factors are not linked to clear recommendations for early identification and prevention. For families, additional work is needed to highlight where these guidelines fit with related national law and policies. Families also need to see how the guidelines can positively influence commissioners to improve life outcomes and avoid crises and deterioration in behaviour. Although NICE guidelines are often condition specific, many of our children and young people have co-existing conditions and so do not fit neatly into just one set of guidelines. That is why data collection is very important to understanding needs and to effective commissioning. There is a need to urgently identify and address the research gaps so that essential interventions are included in future NICE guidelines and standards.
Originality/value
A family carer perspective suggests ways in which implementation of the NICE guidelines can be supported and argues for the importance of the further research that will strengthen future versions of the guidelines.
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