Many families now perform specialist medical procedures at home. Families need appropriate training and support to do this. The aim of this study was to evaluate a library of videos, coproduced with parents and healthcare professionals, to support and educate families caring for a child with a gastrostomy. This work is in partnership with OUHT and Oxford University. This research was was also supported by families from Helen & Douglas House and our team of doctors.
A team of parent representatives, researchers and healthcare professionals from the hospital and community have been involved in creating these videos.
Earlier in the project we did a survey with 150 families to understand their experiences of training and what types of videos would be most helpful. You may have taken part in this.
Key things we learnt from the survey:
- Families wanted both healthcare professionals and parents to feature and that they wanted some videos to be filmed at home and to show “real life”.
- Families wanted help with managing common problems.
- Families valued advice and tips from more experienced families.
The research helped to aid learning not just with other parents, but also with the healthcare professionals too with 73% of them responding to say it helped them.
One mother commented “Although I had read through the leaflets I think having the videos allows us to visualize what the different terms mean, which is so helpful for making sense of, and retaining, the information.”
Healthcare professionals too commented on new learning, for example, learning more about treatments for granulation tissue: “Granulation is always a difficult one to resolve so good to know the favoured 5 steps the CNS (clinical nurse specialist) suggests with confidence”
You can read more about the research itself, the evaluations and watch the videos themselves from the links on the right.