Childhood Disability Research Priority Setting Partnership
The JLA childhood disability research survey to identify topics closed at the end of September, after six months. We received over 750 suggestions from around 450 respondents. Half identified themselves as health professionals; others were predominantly parent carers or members of organisations supported disabled people.
The Steering Group considered the response at a recent meeting. Overall we were pleased that a good mix of parents and professionals responded, and also that a range of professional groups was represented. We were disappointed not to engage more young people and are considering strategies to address some of the potential methodological and contextual challenges to their engagement.
At the meeting, the Steering Group worked through several of the survey suggestions to get a feel for how we would decide whether suggestions are in or out of scope, and how to code various interventions and generic/condition-specific topics.
The coding is now in progress and reviewing progress with this, including quality checks, are on the agenda for our next meeting in January.
Aims and objectives
The aim of the Childhood Disability Research Priority Setting Partnership (PSP) is to identify the unanswered questions about the effectiveness of interventions for children and young people affected by neurodisability from both patient and clinical perspectives. Then to prioritise those unanswered questions that young people, parents and clinicians agree are the most important to create a ‘top 10’ important research topics.
The objectives of the Childhood Disability Research PSP are to:
What is ‘neurodisability’?
For the purposes of this project: "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." [For background to this definition click here].
What sorts of issues are included?
Any ways to improve the health and/or wellbeing of children with neurodisability about which there is uncertainty of effectiveness. This includes medical and social interventions, mainstream and complementary and alternative therapies, or different ways of providing services; included are anything we could modify in the environment to improve these young people's health (see notes in the glossary for further clarification).
Background to the Childhood Disability Research PSP
One of the key aims of the British Academy of Childhood Disability (BACD) Strategic Research Group is to encourage and assist families, young people and clinicians to identify the research priorities for children and young people affected by neurodisability.
The James Lind Alliance (JLA) brings patients, carers and clinicians together in specific conditions to identify and prioritise the top 10 'unanswered questions', about the effects of treatments that they agree are most important. The top 10 'unanswered questions' are then perceived as a priority for research. The JLA calls this sort of activity a ‘Priority Setting Partnership’.
A proposal by the Strategic Research Group for a Childhood Disability Research Priority Setting Partnership was considered by the BACD Executive Committee in Spring 2012. BACD have allocated a small resource from the Paul Polani Fund to run a Childhood Disability Research PSP, following the JLA methods and focusing on ‘neurodisability’.
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