The Power of Partnership: Embracing Participatory Approaches in Occupational Therapy
When Partnership Transforms Practice
Our journey into participatory research began with a novel project involving seven adults with severe CP(GMFCS levels 4-5) who were preparing to move from assisted to independent living. Rather than creating a program based solely on professional expertise, we took an inclusive approach taking our participants as partners rather than subjects.
What made this approach unique was its collaborative nature. Through semi-structured interviews and group discussions, the partners shared their perspectives on what mattered most to them in their transition to independent living. Their insights led to the four themes that became the foundation of the intervention:
1. House management finances, meals, maintenance, and housework.
2. Interactions and boundaries: with caregivers, family, friends, and romantic partners.
3. Schedules: balancing work, leisure, volunteering, education, and health management.
4. "My way": encompassing autonomy, independence, self-advocacy, emotions, and group power.
It is important to remember that the themes emerged from the interviews with the participants, and they may vary for other individuals. Therefore, any intervention should be based on the concerns of that group of participants.
The Heart of Person-Centered Practice
This participatory approach led to a person-centered intervention program that ran for 20 weeks, combining weekly individual sessions using the Pathways and Resources for Engagement and Participation (PREP) approach with group sessions. The results showed significant clinical improvement in 95% of their Canadian Occupational Performance Measure (COPM) goals, along with meaningful improvements in functional independence and wheelchair use confidence.
But numbers only tell part of the story. The true power of this approach lay in how it transformed participants' sense of agency and preparedness. While they became more aware of the challenges ahead, they also developed the confidence and skills to face them. This wasn't just about achieving independence; it was about creating a pathway to independence that respected and incorporated each person's individual journey.
Embracing Multidisciplinary Collaboration
The success was further enhanced by embracing multidisciplinary collaboration throughout the process. Working alongside speech and language therapists, physical therapists, social workers, nurses and vocational counsellors allowed the participants to address the complex interplay of physical, social, and emotional challenges they faced. This proved especially valuable when addressing the interconnected nature the themes - for instance, a speech and language therapist led sessions about the communication with a caregiver, and a social worker led sessions that addressed the emotional needs and formations of support networks. The multidisciplinary team's diverse perspectives enriched understanding of the participant's needs and provided the support needed for their personal goals. This integrated approach highlight show holistic care extends beyond any single profession's expertise, creating a support network that better serves the partners' complex needs during their transition to independent living.
Lessons Learned: The Impact of Participatory Approaches
Through this work, several key insights emerged about the value of participatory approaches:
1. Partnership: When the “patients” become partners rather than subjects, their input shapes not only the intervention but also how the transition process itself is understood.
2. Taking Person-Centered Practice to the Next Level: As health professionals, we always consider the needs of the individuals we are working with. Yet, there is still a place for us to further investigate their perspectives.
3. Holistic Understanding and Multidisciplinary Practice: The themes that emerged from the research went far beyond basic functional skills, encompassing social relationships, emotional well-being, and self-advocacy. This highlights the importance of collaborating with other professionals to address an individual’s needs.
Looking Forward
While our research has demonstrated the effectiveness of participatory approaches in supporting adults with severe CP in their transition to independent living, there's still much to learn and develop. The success of our program raises important questions about how we can better integrate the principles of participatory approaches in to other areas of occupational therapy practice.
Links to our articles:
2. Preparing Adults with Cerebral Palsy to Move from Assisted to Independent Living
Selected Bibliography
Anaby, D., Lal, S., Huszczynski,J., Maich, J., Rogers, J., & Law, M. (2013). Interrupted Time SeriesDesign: A Useful Approach for Studying Interventions TargetingParticipation. Physical & Occupational Therapy In Pediatrics, 34(4),457–470. https://doi.org/10.3109/01942638.2013.866612
Freeman, M., Stewart, D.,Cunningham, C. E., & Gorter, J. W. (2018). “If I had been given thatinformation back then”: An interpretive description exploring the informationneeds of adults with cerebral palsy looking back on their transition to adulthood. Child:care, health and development, 44(5), 689-696. https://doi.org/10.1111/cch.12579
Rosenberg, L., Zecharia, S.,Gilboa, Y., & Golos, A. (2024). Preparing Adults with Cerebral Palsy toMove from Assisted to Independent Living. Canadian Journal ofOccupational Therapy, 00084174241274743. https://doi.org/10.1177/00084174241274743
Rosenberg, L., Zecharia, S.,Gilboa, Y., & Golos, A. (2024). Managing the move from assisted toindependent living: Aninclusive qualitative study among adults with cerebral palsy. Disabilityand Rehabilitation, 46(26), 6402–6409. https://doi.org/10.1080/09638288.2024.2339535
The Author
Shira Zecharia is an Occupational Therapist (M.Sc.OT) who earned both her Bachelor's and Master's degrees in Occupational Therapy from the Hebrew University of Jerusalem in an accelerated program. She has experience working in Israel with children in developmental clinics and kindergartens, as well as with adults with physical disabilities in residential settings. In 2024, Shira joined Words First as a school-based Occupational Therapist in London, UK, continuing her work in supporting individuals’ growth and development.
Shira has also contributed to research, with two published papers in the Disability and Rehabilitation journal and the Canadian Journal of Occupational Therapy (CJOT) journal. This research was also presented in the European Academy of Childhood Disability (EACD)conference of 2023.
She is passionate about helping others reach their goals through meaningful, enjoyable activities in a supportive environment.
You can connect with Shira on LinkedIn here
