What is the research about?
The opinions of everyone involved in the research process -- whether patients, parents, or practitioners -- deserve to be valued. This study is the first to investigate community involvement in autism research from the perspectives of both researchers and other stakeholders.
What did the researchers do?
The authors carried out focus groups and interviews with 72 researchers, parents, practitioners, and persons with ASD in England. The study looked at community engagement under three main categories: dissemination, dialogue, and partnership. The study authors asked all of these groups about their perceptions of community engagement in the research process, as well as their desired future roles in research. An online questionnaire was also distributed widely to the UK’s autism community.
What did the researchers find?
Researchers in general were uncertain about community involvement in their research. Some thought it would be useful, while others believed it would disrupt the research process. Researchers identified obstacles such as time, money, effort, and communication limitations as reasons why it is difficult to increase community involvement. Others said it was beneficial because it would increase the awareness of the research process by persons with ASD and encourage their participation.
Community members in general said that researchers were not proactive enough in reaching out to them, and that they felt undervalued, used, and that their input was neither sought nor respected. Parents and adults with ASD also said that they felt research findings were too complicated, making them hard to understand, and not pertinent to their everyday experiences. Researchers, however, were far more likely than any other participants to believe that they engaged in “dissemination, dialogue, and partnership.”
Take home message
Overall, autism researchers recognized the importance of engaging patients and other stakeholders in the research process and keeping them informed of the significance of research results in a practical way. Autism community members understood that helping with the research is also important, but they disliked the fact that their input does not always come back to them in a form they can understand and act on. The study suggests measures should be taken to develop more supportive research environments for community members. By integrating all partners in the process, research can become more practical and can be used by all stakeholders looking for ways to use research findings in their everyday lives.
The original Research Report was written by E. Pellicano, A. Dinsmore, and T. Charman and was published in PLOS|One. 2014