Rehabilitation in real-life contexts: The PREP approach (May 2022- Edition 07)
May 2022 Edition (07)
Rehabilitation in real-life contexts: The PREP approach
An interview summary with Dana Anaby
Dana R. Anaby, Ph. D.
Associate Professor, School of Physical and Occupational Therapy, McGill University
Researcher, CRIR–Lethbridge-Layton-Mackay Rehabilitation Centre, Mackay Site, CIUSSS West-Central Montreal
ASPIRE Laboratory (Advancing Strategies for Participation-based Initiatives in REhabilitation)
What research project would you like to share with me today?
I would like to talk about the PREP intervention, which has been the main focus of my research program over the last ten years. I was fortunate to receive support from the Canadian Institutes of Health Research (CIHR) to test this intervention among youth and young adults with physical disabilities, and to develop a range of Knowledge Translation tools and material (including an e-learning module) to support its implementation in practice.
You’ve got me! Let’s jump in. What is the PREP?
PREP stands for Pathways and Resources for Engagement and Participation. Overall, it is an intervention that aims to improve participation of individuals with different types of disabilities in ‘real-life’ contexts throughout their lifespan. PREP is quite broad as it is applicable to many diagnoses and/or conditions and can facilitate any activity of choice. In my lab, I mainly focus on improving leisure participation of youth and young adults (12-24 years) living with a physical disability (mobility restriction) in their own community.
This project is linked to two of CRIR’s 2022-2028 Strategic Orientations:
#3 Promoting inclusion, justice and social participation through inclusive environments
#4 Advancing the science of knowledge mobilization and translation
Why is the PREP intervention special?
What is unique is that we are not trying to ‘fix’ the impairment of the youth or teach them specific skills isolated from their community (which is what is most frequently done in practice). Instead, we are focusing on changing aspects of the environment to help the youth participate ‘just as they are’, meaning with the capacity they currently have. By saying environment, I know the first thing that comes to mind is the physical environment – the layout of buildings, etc. – but we actually have a broader view of the environment, such as, social, familial, institutional as well as attitudes of others towards disability and towards the value of being active.
For example, some community instructors may be hesitant to include people with disabilities simply because they don’t know how to adjust their program/activity to someone with special needs. The PREP offers support and guidance to instructors in these situations by providing knowledge and strategies to make the necessary adaptations to their programs. This can empower them and make them feel more at ease. It is also an intervention approach that doesn’t pressure the person with a disability to be different; instead, it takes into consideration their personal desires and modifies aspects of their own environment to encourage their participation. Let’s say a child wants to swim. Typically, we might think about working on range of motion, muscle strength, etc. in hopes this will translate into the youth being able to take part in the activity. However, in reality, the environment is much more complex. The idea is to flip the model commonly used in rehabilitation settings and to start our intervention at the participation level (instead of at the impairment level); we can then see if improving participation leads to improvements of other functions (like range of motion) at the same time. It is a way of disguising therapy into something that youth and young adults are more excited about!
How does the intervention work? Can you walk me through the journey of a participant?
First, the youth choses a leisure community-based activity. It could be any activity, not necessarily a sport. We’ve seen a variety of activities, everything from learning to play an instrument (piano, saxophone, guitar) to volunteering in a radio station, drawing, taking cooking classes, creative writing, even learning Japanese or gymnastics! The most important part is that it must be something the youth wants to do and is passionate about. Once we know the chosen activity, an occupational therapist, together with the youth analyzes the physical, social, and institutional environment to see what kind of barriers or resources may exist.
An important step of the intervention includes building a “participation team”. This team can be comprised of various people such as an instructor, a volunteer, a teacher, parents, siblings; anyone that is part of the process of making the activity possible for the youth. In the case of structured activities, the idea is to find and empower instructors/leaders in the community and build their capacity for facilitating participation and integration of youth with disabilities in their communities. However, some youth prefer engaging in unstructured activities. Let’s come back to the swimming example: a participant might want to just go to the swimming pool in their free time, rather than attend a structured swimming class. In this case, we would find a volunteer similar in age and interests to go swimming with the youth in their community. The volunteer is there to ensure that the youth enjoys their leisure activity. This volunteer is part of the ‘participation team’, and they are trained beforehand on the activity and how to facilitate it for the specific youth to ensure an enjoyable experience. It is also a way of modelling to the youth on how to search for programs or volunteers; how to put an ad up in a certain Facebook group for example, or find student volunteers, etc.
What are a few things you’ve noticed in this research?
It is so amazing and inspiring to see how many people in the community are generous, excited and willing to be involved once they hear about this project! We recently had a person with mild Cerebral Palsy who wanted to play football- he was a big fan of football. We found an experienced coach, who was a retired professional football player that was so willing to get him engaged, even during the pandemic. The youth couldn’t really join the team due to public health restrictions, but the coach and the youth got together in a park once a week to practice throwing the football. The youth even got to meet a team of youth his age training to be professional football players and the entire team presented him with a jersey- he really felt like he was part of the team. It was a big deal! This social component can have a huge impact on youth with disabilities.
We also noticed from talking with parents that there seemed to be a ripple effect in children’s behaviour. After the intervention, some children were a little keener to try new things and more empowered to take on new roles in school (like joining the drama committee!). Our intervention focused on the community aspect, but it is encouraging to hear that it also affected the school setting. Maybe it is from a boost in self-esteem, we don’t really know, but this has really piqued our interest.
What is your next step?
We are starting to look at the long-term implications of the PREP to see if these youth continue to facilitate their participation on their own even after the intervention has finished. This is crucial for sustainability; seeing if they/their families learned new strategies and are empowered to act on this knowledge on their own. The PREP has also gotten a lot of attention from the international community quite quickly (around Canada, India, Australia, Sweden, Brazil, Ireland, UK, and more). We would really love to do a multi-provincial study in the near future because if we really want to shift practice and move away from just focusing on the impairment and emphasizing the environment, we need data on a larger scale.
How are people discovering the PREP?
In 2016, we created a manual and now we also have a website. The manual includes many forms and guides that help outline the activity, the environment, and strategies for removing barriers. There are more than 100 strategies organized by the type of environment (physical, social, attitudinal, institutional, etc.). There is a lot of material but it is very organized! At first, we thought it would only be of interest to occupational therapists, but a lot of physical therapists and other health professionals are excited about the PREP as well, so the guide is very adaptable and is accessible for everyone. Our team does roughly 12 PREP workshops and webinars every year around the world. The website is mainly for health professionals but it can also be helpful for managers and parents because it is very broad and interactive. It has video clips to walk you through the five steps of the PREP; how to set a goal, how to brainstorm and identify environmental barriers, how to suggest solutions, how to implement solutions, and then how to continue with a follow-up and steps for moving forward. The intervention can vary from one child to another, but the principle is that we are changing the environment, we are not changing the child.
No wonder you won an award for the PREP! This sounds incredible. What impact do you hope to see from your research?
I hope the PREP program and the evidence we are building around it will really shift practice toward the focus on participation and move away from just focusing on the impairment of the individual. I hope clinicians, parents and managers really see and value the idea of participation, of changing the environment in order to improve participation and be willing to invest in it, adopt it, and include it as a part of the services they offer to our clientele. I also think it is really important to understand there is more than one way to participate successfully. Like the story with the football team, you don’t have to excel or master an activity as an ‘athlete’ to feel that you are engaged in it.
Thank you so much for sharing with me Dana, your work is incredibly inspiring!
Interview and text: Alida Esmail, Coordinator—Partnerships and Knowledge Mobilization, CRIR at: firstname.lastname@example.org