Setting Research Priorities to Improve the Health of Children and Young People with Neurodisability: A British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership

Morris et al. (2015) full text summary PDF

For which topic were research priorities identified?

children and young people with neurodisability

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Research activity in neurodisability has been observed to be associated with severity and prevalence of particular conditions, although there are exceptions. Recent growth in research was noted not to be proportionate to the severity or numbers of comorbidities, and greater for autism and attention deficit hyperactivity disorder (ADHD). The British Academy of Childhood Disability (BACD) is a UK organisation for professionals working with children and young people with all forms of disability. BACD is committed to collaborating closely with families of disabled children and includes parent carers in its management structure. One of the key aims of the Strategic Research Group (SRG) of BACD is to encourage and assist people in the field, including families and clinicians, to identify research priorities.

What was the objective?

to engage young people, parent carers and clinicians in a systematic process to identify and prioritize research questions regarding ways to improve the health and well-being of children and young people with neurodisability

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: steering group established, stakeholders and partner organizations identified. Step 2: identifying uncertainties: uncertainties gathered via survey and from research recommendations in the UK and WHO guidance documents, 809 suggestions submitted. Step 3: data processing: review of submissions, removing out-of-scope questions, research questions refined, check against evidence, 71 potential research questions identified, steering group discussed and reduced list to 57 items by merging similar issues. Step 4: interim ranking: survey asking participants to select and rank their top 10, steering group considered ranking and agreed on shortlist of 25 questions. Step 5: final prioritization: workshop: serie of small group discussions and rankings, plenary discussions and rankings

Which stakeholders took part?

Patients, carers and clinicians. Survey: 369 participants: 40% non-clinicians. Interim ranking: 76 participants: 26 parents and 1 young person, 10 representatives from eight charities, 39 clinicians. Workshop: 3 young adults with neurodisability, 7 parent carers, 3 representatives from generic child disability charities, a disability advisor in education and 8 health professionals (paediatrician, speech and language therapist, 3 physiotherapists, occupational therapist, nurse, orthopaedic surgeon).

How were stakeholders recruited?

A link to the survey was then forwarded to partner organizations and societies, and advertised by them using various media, such as newsletters; an invitation was forwarded to the contact person at child development teams on the BACD database and the link was also available on the BACD PSP website. Printed copies of the questionnaire were made available at several events for parent carers and young people with freepost return envelope. Interim survey: partner organizations, and people who participated in the original survey Workshop: Partner organizations and societies were invited to nominate representatives; Council for Disabled Children (CDC) invited young people with neurodisability and NNPCF invited parent carers. A broad range of clinicians were invited, including occupational therapists, physiotherapists, speech and language therapists, nurses, paediatricians, teachers, surgeons, clinical psychologists and psychiatrists.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 2 members from the National Network of Parent Carer Forums, 1 young adult and charity representative from the Council for Disabled Children, 1 pediatrician, 1 researcher, the editor of the UK Database of Uncertainties about the Effects of Treatments, 1 JLA advisor. The members were involved in data processing and the interim ranking, and invited workshop participants. The members met seven times during process.