What Should Autism Research Focus Upon? Community Views and Priorities from the United Kingdom

Pellicano et al. (2014) full text summary PDF

For which topic were research priorities identified?

autism

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

The rise in the measured prevalence of autism has been accompanied by much new research and research investment internationally. The expressed hope is that the surge in investment in autism research might lead to translational benefits that will, in time, enhance the life chances of autistic people and their families (Insel and Daniels, 2011). Yet, it can only achieve this goal if such research is directed towards those areas where it is most needed and can make the most impact.

What was the objective?

to establish whether the pattern of current UK autism research funding maps on to the concerns of the autism community

What was the outcome?

a ranking list of 13 research questions

How long did the research prioritization take?

December 2012 - February 2013

Which methods were used to identify research priorities?

focus group; interview; survey

How were the priorities for research identified exactly?

Step 1: interviews and focus groups with autistic adults, family members, practitioners and researchers to identify their priorities for research, 11 focus groups and 10 interviews to gain an understanding of participants' knowledge of current UK autism research, their views on the pattern of UK funding and their priorities for future UK autism research, each focus group kept exclusive (e.g. researchers only, autistic adults only). Step 2: survey: participants were asked to rate the importance of 13 research questions and to state which 3 of the 13 questions were most important to them, the 13 questions were derived from 6 key research areas identified in interviews and focus groups, participants also asked to rate how satisfied they were with the pattern of UK funding and the extent to which they felt it represented their own priorities

Which stakeholders took part?

Autistic adults, family members, practitioners and researchers. Focus groups: 72 participants: 14 autistic adults, 27 parents of autistic children, 20 practitioners (18 female, 2 speech and language therapists, 16 teachers, 2 educational psychologists) and 11 autism researchers. Survey: 1624 participants: 122 autistic individuals, 825 parents or carers of a child with autism, 24 sons, daughters or siblings of an individual with autism, 426 practitioners working with autistic people, 120 autism researchers.

How were stakeholders recruited?

Participants for the focus groups were recruited via community and personal contacts of the research team. For the online survey, community members were recruited via community contacts, including autistic organizations, parent advocacy groups and practitioner networks in and around the UK. The project team used a convenience sample method - snowball sampling - that relied on referral from initial participants (through word-of-mouth, email, social media) to generate additional participants. The project team recruited UK autism researchers by extracting the contact details of those who had published a scholarly article on autism between 2011 and 2012.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.