Case study: Impacting the lives of children - the iKNOW Study

The i-KNOW Feasibility Study was designed to help develop a programme to help prevent the onset of behaviours that negatively impact the quality of life of children with neurodevelopmental difficulties. The study was run as a collaboration between the University of Birmingham and Birmingham Community Healthcare NHS Foundation Trust.

Denise Bain (pictured), a Research Therapist at the Trust, who was working on her first study as an Allied Health Professional, said: “It was a real challenge to meet the recruitment target but overall it has been a really positive experience.”

845 families with children with confirmed or suspected developmental delay were invited to take part and of these,. 165 families expressed interest and were screened, representing a 20% recruitment rate.

Each session of the six week i-KNOW intervention included a 10-minute video, and 50 minutes of discussion and tasks, laid out in the activity workbook and information booklet. 

Group sizes were between three and eight parents and groups ran for one hour a week. The workshops were divided into high risk and moderate groups. They completed questionnaires before and after the intervention to track their understanding of their children’s behaviours.

Denise added: “The parents found the strategies for challenging the reasons behind the behaviours and how to respond, very beneficial.  The feedback we received was very positive, with parents saying it gave them a different perspective on their children’s behaviour. It's been great to have an opportunity to see the impact of this face to face intervention.”

Participant Manjit said: “I found it very helpful to meet other parents in the same situation, in a safe space - parents of children at school or elsewhere are not always understanding, but this has made me happier to share with them about his condition.

Manjit is a full time mum of five, from Yardley and she signed up to the study because her youngest child, aged seven, was diagnosed with neurodevelopmental difficulties.  When they received the diagnosis, Denise recommended the research to them.

“It has been brilliant to learn about his condition and how to cope with his behaviour.  Listening to other participants has made me realise I’m not alone, and the videos have been so useful in terms of advice.  I really think this service should be extended to the children themselves. My son is aware he has autism and this has helped us to manage it - the world is different for him but this has made life easier for the whole family.

“I would definitely recommend people to get involved in research - it’s a good learning experience and helps others in future.”

Three themes were identified  from the data:

- Need for community

- Need for accessibility

- Need for early intervention for children with specific developmental profiles.

The findings are currently being analysed and written up to be published in January 2024.