Improving outcomes for children with communication barriers

Research funded by the NIHR’s Health Services and Delivery Research Programme taking place at I-ASC (Identifying Appropriate Symbol Communication) has successfully involved the public throughout their project. I-ASC is aimed at enhancing the quality of life for children who need electronic augmentative and alternative communication (AAC). 

I-ASC embedded members of the public throughout the study. Children and young people who use AAC and their families were involved as research participants. Young people and family members were members of the project Advisory Board and Critical Friends group. Most significantly, an AAC user and the parent of a young adult who uses AAC were co-researchers on the project. They successfully worked as part of the research team from the initial planning to reporting stages, 

Public involvement is valuable because: 

• It ensures research is democratic and ethical

People who are affected by research have a right to contribute to discussions about what type of research is funded and how it is carried out. Also, people who use health and social care services can find being involved in research empowering.

• It can improve the quality of research

Involving members of the public in research can bring different opinions to discussions about what type of research to do and how to do it. This can help to make research methods more acceptable to research participants. This may mean that people find it easier to take part in research projects. It can also help to increase the quality of the methods used to collect and analyse data from participants. This should lead to superior research findings.

• It can improve the relevance of research to people who use health and social care

When members of the public are involved in deciding how to carry out research, the findings are likely to be more relevant to the recipients of health and social care services.

Visit the I-ASC website for practical resources that may help increase involvement of the public in research, especially those regarded as hard to reach or include.

Our PPI co-researchers were key to the conceptualisation of the bid, even giving of their time voluntarily to support its development, when there was no guarantee of success. They continued to be central to the co-production of each stage of the research and gave authenticity and credibility to the findings as they led on our dissemination activities.

 

I was involved from the very early stages of the project being conceptualised right through to the final evaluation.  As co-researchers we were asked to take the lead on dissemination but we were involved in nearly every aspect of the I-ASC project from designing the methodologies, interviewing, analysis and creating the heuristic.  It was great to see the project through from start to finish rather than just been a hover fly brought in for snippets of the action.

Having worked with AAC professionals for around 20 years as a parent it was fascinating to find out from an insider viewpoint more about how they think and work.