The environment (e.g., physical, social, institutional) plays a key role in shaping participation of individuals with disabilities and therefore, serves as an effective target of interventions. The Pathways and Resources for Engagement and Participation (PREP) is one of the first interventions that aims to enhance participation in different settings among clients with various conditions throughout their lifespan by modifying aspects of the environment only (interventions do not directly address impairments in body functions). The PREP is a client-centered therapy approach that takes place in the individual’s own setting and involves 5 steps: Make goals; Map out a plan; Make it happen; Measure the process and outcomes; Move forward. To date, we have developed a step-by-step manual and an online learning module, both of which provide a detailed protocol for using the PREP and are available on the CanChild website. PREP has also been featured in a book chapter on participation and was recently awarded the Fred P. Sage award for the best educational multimedia tool by the AACPDM. To date, PREP has successfully been implemented worldwide, including in Canada, UK, Ireland, India, Israel and Australia.
Evidence to Support PREP
In the last decade, the ASPIRE lab has generated evidence to support the PREP approach through a series of studies funded by the Canadian Institutes of Health Research (CIHR):
Effectiveness of PREP in promoting participation in community-based leisure activities for youth with physical disabilities
PREP was positively perceived by both parents and therapists
Parents observed improvement in a range of areas (that were not targeted directly by the PREP) of physical, emotional growth, social expansion, and increased autonomy.
Therapists described key elements of the intervention to include the multi-layered composition of the environment and leveraging resources and problem solving. Therapists reflected that their experiences with the PREP led to a new take on the OT role and re-positioning of the concept of participation in therapy practices.
The PREP has a ripple effect expanding youth participation to new areas and contexts
The PREP can improve overall participation beyond the self-chosen activities targeted via the intervention. These positive changes were demonstrated using the PEM-CY (Hoehne et al., 2020) and the Aday App (Anaby et al., 2020; view poster for more details). Following the PREP, youth participated in more study-related activities, took more special roles in school, spent less time at home and more time with friends.
PREP can improve outcome at the body function level
Through the SPOR funding program, we demonstrated the feasibility and provided initial evidence of the effectiveness of PREP in improving body functions through participation in community-based activities chosen by youth with physical disabilities.
Specifically, we examined the impact of youth engagement (n=7) in an 8-week community-based program (e.g., drawing, swimming) on underlying body functions or impairments (e.g., movement, attention, mood), as well as on performance of the selected activity. Our findings show that by enhancing participation in activities of choice (playing the guitar, swimming), affective (e.g., anxiety), cognitive (e.g., attention) and motor aspects (muscle strength, joint mobility) of body-functions also improved.
PREP was found applicable and effective in improving participation of younger children born preterm in Ireland
Positive changes in activity performance was observed in baseline for three different participation goals across three school-age boys with history of pre-term birth. Further clinically significant improvements, of 2.58 points on the COPM scale were seen in overall performance once intervention phase commenced and changes remained at follow-up. (Killeen & Anaby, 2020). View recorded presentation for more details.
PREP facilitates participation during a pandemic
We tested how PREP facilitates participation during a pandemic: The PREP intervention was adjusted to facilitate meaningful social participation according to changing public health guidelines, suggesting that participation during COVID-19 is challenging yet viable. Common strategies included: creating 1:1 opportunities for engagement, matching same-age peers with similar interests, structuring informal activities, being flexible, having an alternative plan, and consulting with the disability community. View poster for more details.
Project BEYOND: Improving Body Functions through Participation
Following a pilot study successfully examining the impact of participation-based interventions, such as the PREP, on a range of body functions (Anaby et al., 2020), we have launched a larger study testing this impact with funding received by a CIHR Project Grant (Anaby et al., 2020-2023; $271,576) and CIHR Operating Supplemental Grants (Anaby et al., 2020-2021; $19,697) and McGill’s Bridge Funding (Anaby 2019; $15,000).
Project BEYOND (Body-function Enhancement for YOuth through participatioN in real-worlD contexts) builds on knowledge our team has developed on innovative clinical trials that can serve as an alternative to efficacy studies. Individualized interventions and outcome measures are used in an Interrupted Time Series (ITS) design to examine whether enhancing participation (e.g., engaging in sledge hockey) can simultaneously improve both body functions (e.g., grip, trunk control, attention, mood) and activity performance – two key outcomes in pediatric rehabilitation. Specifically, the impact of participation in a self-chosen real-life activity, that is meaningful to the youth, on a range of functions (motor, cognitive and affective) are being examined.
Drawing on elements of participatory action research, Project BEYOND fully engages relevant groups of stakeholders using a range of stakeholder-engagement strategies. Findings will enhance methodological knowledge of alternative clinical trials for testing complex individual-based interventions, resulting in evidence that is highly applicable to practice.