Brazilian physical therapists, Marina Junqueira Airoldi and Beatriz Santos Vieira, decided something needed to be done about the negative impact misinformation was having on the development of children with CP in their native Brazil.
“At that time, as health professionals, we were striving to keep updated with scientific information in order to be sure that we would not harm the well-being of the families by the way we planned our intervention strategies,” explains Beatriz.
“As physical therapists we had a background very much focused on body structures and function, stuck in the old paradigm that we should try to fix the children.
“We wanted to make a change. We realized that alone we would not go much further. Thus, we decided to create an online space where we could bring science closer to practice and also provide reliable information to empower families.”
In 2017 Beatriz and Marina established Instituto Nossa Casa, a not-for-profit organisation aiming to promote CP and paediatric stroke awareness while empowering families through reliable information.
“Our aim is to build a network where local and international researchers, health professionals and families can communicate, in order to identify real demands of families and also provide evidence-based information in a plain and friendly language.”
The first release
Nossa Casa’s chosen vehicle for knowledge translation is audio visual media.
The first video they produced was called ‘What is CP?‘ and was very much a collaborative effort.
Marina and Beatriz wrote the original script. That script was then proofread by Julio Alvarez, a parent of a child with CP, as well as Rafael Bonfim, a young journalist living with CP.
In the production phase, the cousin of child with CP recorded the voice-over and artist Renato Stegun, who has a child with CP, did the drawings and animation.
“It was a very interesting and special process to all of us, as everybody working on this project has a very close relationship with a beloved CP individual,” says Beatriz.
Before going live, the video was also screened to a diverse audience including scientists, health professionals and experts in developmental conditions. Then it was shown to members of the general public with no connection to CP, to ensure the information was easily interpreted.
The 3:42 minute video provides a comprehensive but easily understood overview of CP, including causes, classifications, severity levels and treatment modalities. It is in Portuguese with English subtitles.
Since its release on 12 June 2017 via Nossa Casa’s social media platforms, the original video has been viewed over 300,000 times and shared over 10,000 times on Facebook. On YouTube it has had over 11,000 views.
Feedback on the video has been overwhelmingly positive.
A great many comments left on social media reflect how the video has achieved Nossa Casa’s goal of knowledge translation.
Here are some examples:
- “Congratulations on the video.. wonderful not only for family.. especially for people who live with children pc understand better… information and communication..” — (translated) Facebook user.
- “…information that took me years to try to understand, now is finally been translated in this video” — Young adult with CP.
- “it’s a relief to watch this video, I think about parents and even children who want to understand what happens with them and their lives” — Young adult with CP.
Since the initial ‘What is CP?’ video, the Nossa Casa team have been busy producing more educational video content.
Other CP related productions include:
These videos talk about the aspects of treatment planning in terms of the International Classification of Functioning, Disability and Health (ICF). They emphasise abilities and giving children with CP opportunities to live a fully, healthy life.
“We partner with family members, young people with CP and researchers, in order to have all different kind of perspectives,” says Beatriz.
As a NFP organisation they rely heavily on working with others to get projects off the ground.
Just recently, a Spanish version of one of their videos was released, however as Beatriz explains, it would not have been possible without collaboration.
“We always have this idea of having more materials that could more easily reach our latin american community (which is tricky, because we need to produce Portuguese and Spanish materials), however we did not have the means to produce a Spanish version.
“Then, an organisation from Chile watched one of our videos, asked us to produce a Spanish version. Thus, we did it in collaboration. They were in charge of recording the Spanish voice over and we finished the edition,” says Beatriz.
It is great to see that the information Nossa Casa is making available is reaching further and further.
The Nossa Casa website is also a great online resource for all stakeholders involved in CP, whether they be families, researchers, medical professionals or people living with CP.
With more content and training materials to come, Nossa Casa plan to continue making easily accessible evidence-based information to ensure children with CP can live to their fullest potential.